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Young and Young Adult Carers’ Transitions to Adulthood: The impacts of intergenerational mutuality, unequal reciprocation and intergenerational inequality Anna Heyman

PhD

2016

Young and Young Adult Carers’ Transitions to Adulthood: The impacts of intergenerational mutuality, unequal reciprocation and intergenerational inequality

A thesis submitted in partial fulfilment of the requirements for the award of PHD

By

Anna Heyman (BSc Hons, MSc, PGCert HE)

University of Sunderland

Date of submission: June 2016

Dedications Many thanks to Jeremy Kearney, Pete Rushton, Catherine Donovan, Rachel Featherstone, Tony Armatrudo, Steve Macdonald, Wendy Ingram and the late Lynn Keightley Smith.

Thank-you above all to all the young and young and young adult carers and young carers’ workers who contributed to the research directly or indirectly.

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Abstract The aim of this study was to explore the experiences of young and young adult carers during an era of targeted family welfare provision associated with the UK Labour Governments of 1997-2010. Drawing on the concept of intergenerational mutuality (Philip 2003), the study focussed on what happens to child-adult relationships when young and young adult carers move beyond normative intergenerational boundaries. Qualitative biographical interviews with 13 young and young adult carers and in-depth interviews with 10 young carers’ workers were carried out and analysed, using a grounded approach (Bertaux 1981). Young and young adult carers’ accounts of their caring roles were used to explore their relationships with significant others, and their perceptions of the impact of these roles on transitions from childhood to adulthood. Interviews with young carers’ workers were used to explore their views about the balance between promoting efficacy for young and young adult carers and sustaining their rights to selfdevelopment and education. The research makes an original contribution to knowledge. It does so by providing in-depth comparisons between young carers’ workers’ and young and young adult carers' views about the impact of the latter’s caring role on their transitions to adulthood and personal relationships. The former tended to pathologise the situations of young and young adult carers. In contrast, major concerns for young and young adult carers were: the barriers to relationships with peers arising from their role; the rigidity of the education system; and poor support for their dependent relatives, which could have helped them indirectly to manage their caring role.

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Table of Contents Dedications.............................................................................................................................................i Abstract ................................................................................................................................................. ii Chapter 1: Introduction and Rationale ................................................................................................. 1 1.1: Introduction...........................................................................................................................1 1.2: Origins of the study...............................................................................................................2 1.3: Rationale ...............................................................................................................................5 1.4: Research questions................................................................................................................8 1.5: Chapter summaries................................................................................................................9 Chapter 2: Context. Neoliberal Youth Policy and Dependency for Young and Young Adult Carers ................................................................................................................................................. 11 2.1: Introduction.........................................................................................................................11 2.2: Why choose North-East England to study young and young adult carers? ........................12 2.3: The policy and practice context ..........................................................................................17 2.3.1: Policies of the Blair and Brown Governments ....................................................... 17 2.3.2: Youth policy and the individualisation of risk ........................................................ 22 2.4: Carers legislation and services for carers............................................................................23 2.5: Class and gender context: Specific studies of inter-generational relationships (the USA and Scotland)..............................................................................................................................27 2.6: Conclusion ..........................................................................................................................33 Chapter 3: Literature Review: The Research Literature on Young and Young Adult Carers, and its Applicability to their Intergenerational Relationships ........................................................... 35 3.1: Introduction.........................................................................................................................35 3.2: Findings about young carers in the era of male-breadwinner based socialism and Fabianism (1905-1960) ..............................................................................................................40 3.2.1: Discussion of research methodologies.................................................................... 43 3.2.2: Transferability of findings to this PHD .................................................................. 44 3.3: Literature on young and young adult carers in the era of Labour and Conservative Government consensus accompanied by feminist critique (1960-1989) ...................................46 3.3.1: Findings about young and young adult carers ........................................................ 46 3.3.2: Discussion of research methodologies.................................................................... 46 3.3.3: Transferability findings to this PhD........................................................................ 46 3.4: Literature about young and young adult carers after the NHS and Community Care Act, and before the Carers' (Recognition and Services) Act (1990-1996) ................................47 3.4.1: Findings about young and young adult carers ........................................................ 47 3.4.2: Discussion of research methodologies.................................................................... 55 3.4.3: Transferability of findings to this PhD ................................................................... 58 3.5: Literature about young and young adult carers in the era from the Carers (Recognition and Services) Act (CA) to the present .......................................................................................60 3.5.1: Findings about young and young adult carers in the post CA era .......................... 60 3.5.2: Discussion of methodologies .................................................................................. 69 3.5.3: Transferability to this PhD...................................................................................... 71 3.6: Review of research literature in the era of austerity, 2011-2015 ........................................75 3.6.1: Conclusions concerning young carers .................................................................... 80 3.7: Young adult carers ..............................................................................................................81 3.7.1: Findings about young adult carers .......................................................................... 81 3.7.2: Discussion of research methodologies.................................................................... 86 3.7.3: Relevance to this thesis ........................................................................................... 88 3.8: Conclusion: Gaps in the research literature about young and young adult carers ..............89 iii

Chapter 4: The Literature on Adult Carers ........................................................................................ 92 4.1: Introduction.........................................................................................................................92 4.2: Perspectives that view carers as an appropriate resource - social work according to the Strengths Model .........................................................................................................................93 4.3: Perspectives that view carers as potentially exploited victims of structures of dependency.................................................................................................................................96 4.4: Contemporary thinking about carers as givers and receivers of care, and supporting research ....................................................................................................................................100 4.5: Conclusion ........................................................................................................................103 Chapter 5: Methodology .................................................................................................................. 107 5.1.: Introduction......................................................................................................................107 5.2: Key methodological terms ................................................................................................108 5.2.1: Social structures .................................................................................................... 108 5.2.2: Agency .................................................................................................................. 109 5.2.3: Modernism and postmodernism............................................................................ 110 5.3: Grounded approaches to research methodology ...............................................................111 5.4: A realist biographical approach ........................................................................................112 5.5: Rationale for, and use of, a methodology derived from narratives ...................................116 5.6: Qualitative methods ..........................................................................................................118 5.7: Reflectivity........................................................................................................................119 5.8: Research ethics..................................................................................................................123 5.8.1: Anonymity prior to recruitment ............................................................................ 123 5.8.2: Informed consent .................................................................................................. 123 5.8.3: Researcher sensitivity ........................................................................................... 124 5.8.4: The right to withdraw ........................................................................................... 124 5.8.5: Confidentiality ...................................................................................................... 125 5.8.6: Data handling ........................................................................................................ 125 5.8.7: Respondent vulnerability ...................................................................................... 126 5.8.8: Feedback about research findings ......................................................................... 127 5.8.9: Professional integrity ............................................................................................ 127 5.8.10: Relations with, and responsibilities towards, research participants .................... 127 5.9: Overview of Research Design ..........................................................................................128 5.10: Researcher sensitisation ..................................................................................................128 5.11: Changes to the interview schedule between rounds of interviewing and analysis .........130 5.12: The sample ......................................................................................................................132 5.13: The interview process .....................................................................................................138 5.13.1: The interview set-up ........................................................................................... 138 5.13.2: The interview experience .................................................................................... 140 5.13.3: The interview process ......................................................................................... 143 5.14: Reflections on the study methodology............................................................................147 5.15: Methods of analysis ........................................................................................................148 5.15.1: Examples of data coding ..................................................................................... 149 5.15.2: Use of narrative analysis ..................................................................................... 154 5.16: Summary .........................................................................................................................155 Chapter 6: Findings from Interviews with Young Carers’ workers ................................................ 156 6.1: Introduction............................................................................................................................... 156 6.2: Bad parents as the exceptions rather than the norm: Accounts of inappropriate parental care ...........................................................................................................................................159 6.3: Family choices of their children’s domestic roles according to perceived competence...161 iv

6.4: Parental care as the key determinant of young and young adult carers’ well-being ........164 6.5: Accounts of young and young adult carers who are receiving satisfactory and appropriate parental care ..........................................................................................................165 6.6: Views about young and young adult carer family dynamics ............................................166 6.7: Views of youth ..................................................................................................................169 6.8: Views about transitions to adulthood................................................................................173 6.9: Views of policy and mainstream practice .........................................................................176 6.9.1: Critical views of the 'young carer' label................................................................ 176 6.9.2: Critique of the 'Cinderella Syndrome' ................................................................... 182 6.9.3: Views on how both oppression within the family and negative constructions of young and young adult carers as 'deprived' can be simultaneously resisted ................... 186 6.10: Conclusion ......................................................................................................................188 Chapter 7: Findings from Interviews with Young and Young Adult Carers ................................... 191 7.1: Introduction.......................................................................................................................191 7.2: The disabled can still look out for their families: Reciprocation as a route to mutuality? 193 7.3: The need for greater mutuality..........................................................................................197 7.4: The small exceptions that prove the rule: The rareness of achieving intergenerational mutuality even with the cared- for parent .................................................................................203 7.5: What young and young adult carers get from enhanced contact with adults: Challenging the assumption that youth need constant guidance from older generations ........206 7.6: Chapter summary and conclusions ...................................................................................243 Chapter 8: Discussion ...................................................................................................................... 245 8.1: Introduction.......................................................................................................................245 8.2: Discussion of findings in relation to intersectionality ......................................................247 8.3: Can rebellion be beneficial, or does it just reinforce the oppression of women and young people under neoliberalism? .........................................................................................251 8.4: Do mutual relationships correspond to equalised power? ................................................255 8.5: Should more care be provided by the state? .....................................................................257 8.6: Do young and young adult carers need specialist projects? .............................................258 8.7: Methodological debate: Depth of biographical detail versus comparability ....................259 8.8: Is there a problem in being a female interviewer predominantly interviewing young men? .........................................................................................................................................260 8.9: The value and limitations of retrospective accounts.........................................................261 8.10: Sensitisation ....................................................................................................................263 8.11: To what extent should biographical researchers try to predict the future on the basis of respondents’ expressed attitudes?........................................................................................263 8.12: Does the study of young and young adult carers require a grounded approach? ...........264 Chapter 9: Conclusions .................................................................................................................... 266 9.1: Implications for youth studies and gender theory.............................................................268 9.2: Implications for studies of carers: Dependency structures impacting on young and young adult carers ....................................................................................................................270 9.3: Long term impact of the caring role .................................................................................275 9.4: Young people, carer roles, and dependency dynamics .....................................................276 9.5: Recommendations for practice: What can be done to improve support for young and young adult carers? ..................................................................................................................278 9.6: Coda: Policy-making is personal ......................................................................................281 References ........................................................................................................................................ 283 Appendix 1: Abstracts from published outputs of this project ........................................................ 304 Appendix 2: Question schedules for young carers’ workers, and young and young adult carers ... 306 v

Appendix 3: information sheet and consent form for young and young adult carers ...................... 310 Appendix 4: Ethics approval............................................................................................................ 312 Appendix 5: Extracts from sample transcript .................................................................................. 313 Appendix 6: procedure to protect all respondents at the level of a 16 year old (as accepted by the ethics committee). ...................................................................................................................... 315

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Chapter 1: Introduction and Rationale

1.1: Introduction This thesis presents a study of relationships between members of different generations where one family member is a young or young adult carer. More specifically, it examines the level of mutuality in their relationships with the older generation, and the possible effects on their transition to adulthood.

Generation is conventionally taken to mean age groups separated by about 25 years, roughly the UK average age for having a first child. However, Pilcher (1995) suggested a historically based definition, in which generations are defined according to the events that took place during people’s formative years. For example, the ‘generation’ of women born in the 1890s were defined by a shortage of eligible men to marry, and the post-war baby-boomer generation by the plentiful availability of jobs suited to every level of education. The current generation is defined by indefinitely extended transitions to adulthood, and the uncoupling of different transitions, for instance through living with parents whilst progressing a career. Different generations may also have different attitudes to authority at a given age, and towards independence.

Over the course of the last century, the time allowed for transition to adulthood has gradually been extended to older ages, thereby extending the age range for being considered a young carer. In relation to this shift, young adult carers, aged 18-25, have been identified as a potential social problem quite recently, only over the last decade. For the purposes of this thesis, the age ranges for young carers and young adult carers have been defined to correspond to those adopted in the Children and Families Act of 2014 (Carers Trust 2015). The term ‘young carer’ will be used to refer to carers aged under 18, and ‘young adult carer’ to those aged from 18 to their mid20s. As shown in Table 5.2, the sample for the present study included three young carers and 10 young adult carers. Although slightly cumbersome, the term ‘young and young adult carers’, or similar, will be used to cover the entire age range from childhood through to the mid-20s. The terms ‘young carers’ worker’ and ‘young 1

carers’ project’ have been retained to reflect actual titles of roles and activities oriented primarily towards school-age carers. Finally, it should be recognised that that ‘young adult carers’ aged 18 and over may refer to themselves, or be referred to by young carers’ workers, as ‘young carers’. Mutuality has been defined in the dictionary as the noun form of mutual: ‘directed and received by each toward the other; reciprocal: e.g. mutual respect’ (Farlex 2012: p1). However, Philip (2003) used the term to describe friendly intergenerational relationships in which both parties share a sense of humour and common values. Lynch et al. (2009: p127) used the phrase ‘mutuality and interdependency’ to depict attributes which they believed to exist in most relationships between carers and the sick or disabled family members for whom they care. Lynch et al. offered the examples of a disabled adult son providing a chauffeuring service for his nondisabled mother, a father who reported that his disabled daughter’s personality was the joy of his life, and a mother who relied on her disabled son for someone to offload her problems onto. Phillip’s (2003) finding that mutual relationships between ‘natural’ mentors and mentees are not necessarily encouraging or healthy for the young person shows that the effects of any such mutuality can be both positive and negative. However, as argued by Gilligan (1981), relationships and relationship development need to be understood using individuals’ own frames of reference. Those frames of reference may reinforce inequality, but still should be recognised.

1.2: Origins of the study The present research also has a more general focus, namely the entire set of valuable and highly competent young adult behaviours that are missing from most policy and practice discourse, despite being highly visible in society. This second focus originated from a series of interviews that I carried out when I was employed as a full time researcher for Creative Partnerships (CP). This initiative was funded by the last Labour Government in order to enhance the creativity of school children,

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schools, and the communities around schools, through involving professional artists in a whole range of school subjects and activities.

The research involved over 100 individuals being consulted in participatory small group interviews with children, teachers and local parents (see Appendix 1). Three of the responses which I received led me to question the Creative Partnerships programme’s definition of creativity. This definition was operationalised in terms of children working on quality ‘products’ resembling those of professional artists. Moreover, these responses subsequently led me to question many other policies predicated on assumptions about young people being ‘natural’ recipients of care and guidance from those older than themselves, rather than givers of care and guidance.

The first challenging response was from a six year old girl, who was asked about her experiences of creative activities inside and outside of school. She told me about a touchy-feely collage that she had made for her blind older sister. She reported that she had come up with the idea completely on her own. This was the first time in data collection for the study that any child had mentioned doing anything that was solely for the benefit of another person. All the other children had said that they felt themselves to be at their most creative when they were practising their skills in complete freedom from any obligation or target, i.e. when they were at play.

I was so surprised at this response that I could not help expressing my positive approval, even though this might have invalidated the rest of the interview. However, the little girl’s face hardened slightly, and she said, ‘It’s nice that I did it, but it’s not nice for her that she’s blind!’ She was not interested in my approval, and was happy to gently challenge me in order to assert the needs of her disabled sister. The same child also felt that what she found hardest at school was feeling that she constantly had to stick up for ‘smaller people’. This led me to wonder where and when such a young child had learned to challenge so skilfully, and in so mature a manner. I wondered why I was so surprised that a young child would act in such selfless ways, and what had made me think that she would not. Finally, I began to reflect on whether there might have been a connection between her experience of disability within the family and her being so concerned with the welfare of others at school. I 3

had not particularly taken an interest in the term ‘young carer’ at that time. I do not know enough about this girl to say whether I should count her as a ‘young carer’, but I do know that I found her responses fascinating and surprising.

The second challenging response came from a tall, thoughtful-looking 15 year old boy with long, well-kept hair. He gave a fairly lack-lustre response to a question about creativity inside and outside of school. In contrast, when asked what stopped him being more creative at school, he became animated, and complained that the school budget was biased towards art. He felt most creative doing sports, but the school had been unable to afford to replace the basket-ball hoop. He had eventually decided to make a new hoop himself, which the whole school was now using.

I was later to mention this exchange during a conference presentation. Members of the audience of creativity experts commented that making the basket-ball hoop was one of the most creative acts by a school pupil that they had ever heard of. Nevertheless, they agreed with me that Creative Partnerships was not aimed at providing resources for such bottom-up creativity. The young man had not carried out the act in order to be creative like a professional artist. Instead, he had undertaken it almost as an act of defiance against the arts. However, as I was able to verify with a teacher, the school had allowed him to put up the hoop, while failing to overtly recognise the educational value of his hoop-making as an act in itself. It would appear that the sports teachers felt the same way that he did, and had collaborated with him. Teachers and pupil had worked together, acting against the perceived funding bias of the school, and the flaws of a government initiative.

The third challenging response came from a 16 year old girl who was asked about her creative activities in her community as part of a ‘street work’ exercise. She was dressed in the type of outfit that immediately makes me think of an associate professional, namely an over-size, baggy fleece, and smart black trousers and shoes. Despite this appearance, she was actually a youth work volunteer. Older adults in her area had expressed negative attitudes towards young people and young families in the local area. ‘Idiots breeding idiots’ was one man’s description. However, her key concern was the decline in the number of people in the younger 4

age group, and how this was creating a negative spiral in which there was less and less on offer in the community for young people.

The impact on me of this particular interview was profound. How could such a young person see the relevance to her community of its ageing and declining population when others could not? The main problem facing the community was a lack of jobs, not a lack of engagement with professional artists. It was an external problem, not an internal one. This is a message that the most powerful actors in our supposedly market-orientated society may not want to hear. The present thesis addresses the issue of potential policy-maker and professional blindness to the knowledge, intuition and competencies possessed by young people whose selflessness and antiauthoritarianism can make it hard for them to individually capitalise on their positive attributes. It does so through exploring the concerns of young and young adult carers, an identifiable but relatively under-researched group of mostly altruistic young people.

In the next section, I will present the study rationale in relation to the limitations in current research and policy with respect to young and young adult carers. I will then outline the contents of the chapters which follow.

1.3: Rationale This thesis focuses on the experiences of young and young adult carers during the period of the Blair and Brown Labour Governments (May 1997- May 2010). These carers have, in more recent times, been described as a group whose existence poses a problem (Aldridge & Becker 1993), whereas they were formerly classed as a group suffering from problems such as missing school (Fox 1995). Voices from all sides of the debate have gradually started to admit that it is too simplistic to class young and young adult carers as a problem group, and have called for research on this group to be undertaken from a more critical perspective (Becker 2005). However, to-date, little research taking this stance has been forthcoming. There is a need to break down the barriers to future critical research on young and young adult carers through understanding why this problem is so rarely assessed by the same 5

criteria, for instance fit with gender norms, by which other relationship phenomena are judged (Philip 2003).

To understand the lack of balance in debates about young and young adult carers, a broader issue needs to be addressed, namely the one-dimensional construction of adult-youth relationships that dominates in late-modern Western cultures. This construction states that there is something ‘wrong’ if young people are anything other than the net recipients of help, guidance and education from the older generation. Any other role is deemed likely to compromise their ability to become ‘responsible’, financially self-supporting citizens in the future (France & Wiles 1997).

If young people play a pivotal role in supporting those older than themselves, then there is assumed to be a pathology, such as exploitation, or loss of childhood. Conversely, if young people distance themselves from the guidance of ‘appropriate adults’, for example by starting a family of their own at age 17, then, there is assumed to be something even more ‘wrong’. Such youths are often demonised as displaying 'underclass' behaviour, as if it is their own fault that they are cutting down their own options too soon, as well as foregoing their rights as children. They are blamed for putting themselves at enhanced risk of future unemployment, even if they currently have some kind of casual work (Craine 1997; Macdonald 1997). This thesis is underpinned by the argument that the key conceptual gap which is creating both a victim discourse and a process of pathologisation is the lack of acknowledgement of a range of types of intergenerational relationship.

Exploitative intergenerational relations can have an even more profound effect on the health of a society than those of class and gender because such relations take place within class and gender groups, as well as between them. They represent a fundamental play of power by one group of people on another (Campbell et al. 2005). Campbell gives the example of sugar daddies to show how the marginalisation of both genders of young people can lead young women to tie themselves to exploitative older men in order to get properly fed. However, there is no inherent reason for relationships between young and young adult carers and those they look after to be exploitative, or for power relations to be one-way 6

hierarchical. The alternative practices that already exist need to be better understood.

For the purposes of this thesis, I will define intergenerational mutuality in terms of members of different generations having an equal and shared appreciation of one another’s sense of humour and values, along with solidarity, and identification of a shared fate for the foreseeable future. This is in direct contrast to relationships in which there are exchanges based on inequality, for example when a parent promises a daughter a substantial inheritance in return for care (Lewis & Meredith 1988). In such relationships, the more powerful person’s values predominate, and there is likely to be an absence of sharing or solidarity. Young and young adult carers are among the best groups with whom to explore the possibility of intergenerational mutuality, because they are, by definition, givers of care, as well as, nearly always, being receivers (Olsen & Clarke 2003). Hence, the parent-child relationship must at least involve reciprocation of care, and may well demonstrate mutuality. Young and young adult carers are also a group who have been particularly affected by a lack of policy and professional appreciation of the full range of possible intergenerational relationships.

Researchers and the media often assume that young and young adult carers are in ‘role-reversal’ with their parents, rather than in an alternative type of parent-child relationship (Olsen & Clarke 2003). Olsen & Clarke (2003) have investigated the nature of disabled parent-child relationships from the parents’ point of view in order to critique the notion of role-reversal. However, they have not looked at such relationships in any depth from the child’s point of view. Moreover, they also say nothing about young adult offspring aged over 18. My research has explored the extent to which young and young adult carers’ relationships with the older generation are mutual, role-reversed, reciprocal, and/or within the boundaries of ‘normal’ generational hierarchies in which mature adults look after, instruct and look out for youths. By investigating this topic, I hope to contribute to a debate that will have broader repercussions in the field of Youth Studies.

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1.4: Research questions From the literature, there is little doubt that young and young adult carers living in late modern societies such as the UK spend more time than their peers with people from older generations, including the cared-for person’s other family carers, social workers, professional carers and doctors. But we know little about how young and young adult carers perceive this increased contact to be affecting them. Impacts that they may view positively include: the establishment of multi-generational social networks; acquiring broader knowledge of job, leisure and educational opportunities, particularly in the care work fields; being ahead of one’s peers in the transition to gaining an adult understanding of the world; and receiving an early introduction to political issues such as disability rights. Outcomes that young and young adult carers may view negatively include exploitation by adults (Philip 2003, 2006), and anxiety about becoming increasingly set-apart and isolated from peers. Existing research shows that many present and former young and young adult carers do report feeling, or having felt, anxious about the latter two issues. However, some do not see them as problems (O’Dell et al. 2010; Thomas et al. 2003; Frank et al. 1999). Moreover, O’Dell et al. have also suggested that feelings of anxiety about having ‘inadequate’ social networks may be the result of exposure to negative media constructions of young and young adult carers.

The two research questions around which the project discussed in this thesis were organised address perceptions of relationships with older generations from the perspectives of young and young adult carers and specialist support services respectively: Research question 1: How do young and young adult carers see the nature and value of their relationships with older generations to have been affected by their caring role? Research question 2: How do young carers’ workers’ perceptions of the impact on relationships with older generations of being a young or young adult carer differ from those of carers themselves?

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1.5: Chapter summaries The first main chapter (Chapter 2: Context) describes features of North-East England that make it likely to contain a relatively large number of highly competent young people who have taken on informal caring roles with family members, including parents, whom children would normally be dependent on. Such roles often demand considerable self-taught specialist expertise. Research from both the USA and Scotland (Philip 2003) shows that young people often give more than they get from their parents and teachers, but such a viewpoint has generally been ignored by policy-makers.

The first literature review chapter (Chapter 3: Literature Review) highlights the failure of existing research on young and young adult carers to address the reciprocal nature of care arrangements. The potential for relationships of mutuality between members of different generations appears to have been little considered in relation to these groups. The second literature review chapter (Chapter 4: The Literature on Adult Carers) discusses the broader issue of recognising the critical importance of biography in determining who becomes a carer of any age. Key analytical terms for the research are defined at the end of this chapter.

Chapter 5 (Methodology) provides a rationale for the use of realist biographical research with young and young adult carers, and the adoption of a grounded approach to design, data collection and analysis. The research methods used in the study are outlined, and potential issues discussed.

Chapter 6 (Findings from Interviews with Practitioners) outlines the views of young carers’ workers on the nature of young and young adult carers’ relationships with older generations, including their teachers and lecturers. It will be concluded that young carers’ workers mostly did not take issue with young people being responsible for some practical caring tasks as long as parents supported their transition to independent adulthood. However, the idea of intergenerational mutuality was implicitly rejected. The workers felt that parents had an irreducible top-down responsibility for their children’s well-being. They, therefore, viewed the structure of

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such families as inherently fragile, and prone to pathologies such as the child becoming trapped in caring roles for life, and, occasionally, actual abuse.

Chapter 7 (Findings from Interviews with Young and Young Adult Carers) uses the data from biographical interviews with young and young adult carers to challenge some of the victimhood myths surrounding them. Their problems and discomforts are linked to wider social class and gender hierarchies, the effects of which are merely exacerbated by the caring role. The chapter offers evidence that young and young adult carers often strive for mutual relationships with the cared-for person and other members of the older generation. However, it will be concluded that unmet needs tend to outweigh the achievement of mutuality, even for well-networked respondents.

Chapter 8 (Discussion) revisits relevant findings from existing studies in order to compare and contrast their findings with the outcomes of the present research. Key controversies are addressed, particularly around intersectionality, forms of disadvantage that are experienced by people who fit into a particular combination of two or more categories, for instance women with Black African origins. The chapter also discusses the methodological strengths and limitations of this research project in relation to existing research into the lives of young and young adult carers.

Chapter 9 (Conclusions) outlines methodological, theoretical and practical recommendations. With respect to methodology, the present study has highlighted the need to bring together insights from research involving current young people with retrospective and longitudinal research. At the theoretical level, the research points to the importance of understanding structures of dependency as including the state, but without casting the state as enemy. At the practical level, the research shows that practitioners need to challenge gender and class stereotypes that may affect young and young adult carers, even those who appear self-confident and free of culturally-mediated assumptions about such differences.

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Chapter 2: Context. Neoliberal Youth Policy and Dependency for Young and Young Adult Carers

2.1: Introduction The previous chapter presented the rationale for the study by outlining why young and young adult carers are likely to be considered deviant in a society that defines responsibility in terms of becoming a self-reliant adult. This chapter discusses how the problem has been framed in the period since 1990, when the term ‘carers’ first appeared in professional terminology. It focuses particularly on the period since 1997. In this period, and initially through the New Deal, young people aged 16-25 became an official category, viewed as deviant if they had foregone education and early career development in order to undertake a caring role.

To frame the problem in terms of a longer-term historical legacy, care of the sick and disabled poor was less obviously an issue for carers in the nineteenth and early twentieth centuries. Poor families with disabled members were split up by the state, into workhouses, long-stay hospitals and orphanages (Borsay 2004). For those who had insurance, there was also the option of private hospital to recuperate from nonlife threatening illnesses (Spring Rice 1939) that would now almost certainly be cared for at home. Meanwhile, the relatively wealthy were able to pressurise their daughters into not marrying, offering the prospect of a future house. By doing so, they were able to retain a carer for their old age, with no help or interference from the state (Lewis & Meredith 1988). However, in the 21st century, there is no clear pathway by which either the state or individuals can guarantee how people’s care needs will be met. At the very best, disabled people can choose who cares for them, but the choice is by no means simple, as professional care can often be inappropriate, and may disrupt household and family relationships (Frank et al. 1999; Thomas et al. 2003).

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As discussed in the next section, statistical evidence suggests that North-East England performs poorly on indicators of youth moving into states of independence from their parents. Moreover, there are reasons to suggest, albeit speculatively, that various factors related to family structure, poor employment opportunities for the adult population as a whole and poor health might make the proportion of young people taking on 'hidden' young and young adult carer roles relatively high in the North-East as compared to the rest of the country. For these reasons, North-East England is an ideal place in which to undertake a biographical study of young and young adult carers. I will begin this chapter by outlining the regionally specific factors impacting on young and young adult carers.

2.2: Why choose North-East England to study young and young adult carers? The Office for National Statistics (ONS 2011) gave a statistical summary of the relative position of the North-East region at the time of data collection (2008-2010), drawing out the key points of contrast to the national average in terms of demographics, life expectancy, worklessness and employment. People aged 65 and over in the North-East in 2009 made up a slightly higher proportion (17.1%, UK 16.4%) of the population, and under-16s a slightly lower proportion (17.7%, UK 18.7%). Average life expectancies were lower, which suggests somewhat poorer population health. Older women, in particular, had higher levels of morbidity (see below) at the time when the study was carried out. North-East men aged 65 in 20072009 could expect to live, on average, another 17.0 years (UK 17.8 years), and women 19.5 years (UK 20.4 years). The unemployment rate in the fourth quarter of 2010 was much higher in North-East England than in the UK as a whole, at 10.2 per cent (UK 7.9%). The proportion of children living in workless households in the second quarter of 2010 was also higher in the North-East (18.8 per cent, UK 15.9%), although the regional difference was not as stark as that for employment rates. However, even families with an adult in work were worse-off on average in the NorthEast, as the median gross weekly pay for full-time adult employees who were resident in the region stood at only £443 (UK £499, Table 9.19, ONS 2011: p1). 12

The child poverty level in the region was also relatively high for the UK, in terms of both income and material deprivation. Children and young people aged under 20 were more likely to live in deprived super-output areas (the units of census data that the wards are broken into by the Office of National Statistics) in the North-East than they were in England as a whole. However, schools in many parts of the region were performing well in terms of value added, as over 25% of children from deprived super-output areas obtained five or more GCSEs including English and Maths. Moreover, overall rates of GCSE attainment in all but one North-East local authority area were classed as average or good (Bayliss & Sly 2009).

Contrary to popular beliefs about the lack of opportunities for young adults in the region, only just over 6% of 16-17 year olds were NEET (Not in Education, Employment or Training) at the time of data collection, as compared to 9% in SouthEast England (Bayliss & Sly 2009). The proportion in North-East England was only slightly above London's 5%. Participation by 16-17 year olds in further education and government-sponsored training was fairly high in the North-East at the time that my interviews were carried out (2008-2010). Only South-East England and London had higher rates. The North-East topped the chart for this age group's participation in work-based learning (Bayliss & Sly 2009). It would seem that, with the help of the last Labour Government’s social investment, the North-East’s parents, teachers and youth workers had at least managed to maintain a society that could socialise and educate its young, even though the region has faced the worst decline of any in the country in terms of employment, particularly non-casualised employment (Macdonald & Marsh 2004).

On the other hand, evidence from Macdonald and Marsh (2004) suggests that much of this high participation rate may be due to young people going to college or on training placements temporarily as a way of avoiding unemployment, rather than as a way of obtaining qualifications. The young people who participated in their Teesside-based study frequently dropped out of courses without completing them if 13

casual paid employment became available (Macdonald & Marsh 2004). As a result, the researchers reported, only two of their sample of 88 young people obtained salaried positions by age 30, and both of these were through the efforts of their employer, rather than direct use of a qualification (Macdonald & Shildrick 2007). This finding is supported by the Learning and Skills Council who raised concerns in 2008 about the number of young people in the North-East who were starting Further Education courses at age 16, only to drop out at age 17. However, success rates on courses were improving overall for 16-18 year olds, while success rates for adults over 19 were above the national average (LSC 2008).

Regardless of educational participation, the number of young adults taking on carer roles, and their length of the time in those roles, is likely to be related to levels of youth dependency on their families. It has long been known, and remains the case, that the longer adults remain living in their family of origin, the less likely they are to form the types of relationships that could lead to their forming a new household of their own (NOMIS 2009; Townsend 1963). This lack of relationship formation leads to a decreased chance of financial independence from the older generation as two incomes are now needed by most people to buy and run a house. At the time of data collection (2008-2010), the North-East had a relatively low number of households forming as a proportion of all households, higher only than in Northern Ireland; a relatively high number of households paying over half their income in housing costs; and a higher number of people in their twenties and thirties still living at home (NHPAU 2009; ONS 2000). The employment rate for 16-64 year olds stood at 65.9%, as compared to a national average of 70.3% (NOMIS 2010).

Even university students and graduates have been more likely to be dependent on their family of origin if they were raised in the North-East. Over 50% of young fulltime undergraduates who originate from the North-East stay in the region to study. Moreover, those North-East students who study locally, and particularly those from disadvantaged backgrounds, have a lower likelihood of migrating in search of better jobs on graduation, as compared to students who came to study in the region from 14

elsewhere. The former have a far higher risk of underemployment as a result of their lack of willingness and/or means to travel on graduation (Universities UK 2001); and, therefore, a higher likelihood of long-term dependency on their families of origin.

These factors alone do not cause people to become young or young adult carers. For this to happen, the lack of opportunities for young adults to become independent of the families would need to be combined with other factors that create a relatively high number of people with otherwise unmet care needs. However, it is not known, and probably will never know, exactly how many young people take on some form of major caring responsibility, in the North-East, or nationally. Census data on hours per week of caring suggest there are about 290,000 carers in the UK ages 16-24, and that these young people are twice as likely to be Not in Education or Training (NEET) than non-carers of the same age (Carers Trust 2013). Some of these carers will be looking for work, but finding it harder because of their caring responsibilities, and other hardships related to having a disabled family member. One survey estimated that 20% of NEETs are not actively seeking work, as they are looking after either their own children following teenage pregnancy, or have some other form of caring responsibility (Sissons & Jones 2012).

The data on the number of young and young adult carers is known to give a gross underestimate of numbers, as the census is completed by the head of household, and only covers the more obvious caring roles (Dearden & Becker 2004). It has also long been known that young carers and their parents may keep caring roles hidden for fear of attracting unwanted attention from social services (DoH 1991). As there is also no young adult equivalent of the BBC survey (Carers Trust 2013) which uncovered 1.2 million young carers aged under 18 in the UK, it is impossible to estimate the number of 'hidden' young adult carers aged 18 and over in the NorthEast.

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Various regional factors may add to the numbers in caring roles for people with a long-term illness or disability, as compared to the UK average. One such factor is the higher proportion of head of households who are categorised as disabled. In the North-East, 45% of households, as compared to 33% in the UK overall, receive incapacity benefit or severe disablement allowance (ONS 2011b). A second regional factor is family structure. Family household units are smaller in North-East England than anywhere else in the UK, with 53% of households with dependent children containing only one dependent child, as compared to 42% in the South-East (Bayliss and Sly 2009: Figure 1.4). In addition, the proportion of lone parent households is also somewhat higher in the North-East. In 2010, it stood at 7.6% as compared to 7.1% for the UK as a whole (ONS 2011). These two features of family structure decrease the likelihood that an alternative carer will be available to prevent any particular young person needing to take on major caring responsibilities in the event of disability or illness.

A third factor is the region’s ageing population, which contains proportionally less under 20s than the UK average, and more over 60s (ONS 2011: p1). This results in there being more older people to care for, and less young people to share out the care if middle-aged people are otherwise occupied, and older spouses are unavailable. In consequence, a greater proportion of young people will be potentially acting as lone carers for an older person.

In addition, the North-East's population of older people, particularly its women, are in relatively poor health. Life expectancies of both men and women at age 65 are about a year below the national averages (ONS 2001). The North-East is one of only four English regions where older women are more likely to report bad or very bad health than older men (Cai et al. 2008). This is significant, as research has suggested that fit elderly husbands often insist that younger relations care for incapacitated wives, whereas fit elderly wives care for their own husbands (Ungerson 1989).

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These factors, combined with the above mentioned lack of opportunities for young adults to become independent of their families, may be producing a relatively high number of young and young adult carers in the North-East as a proportion of the population. The lack of direct evidence must be emphasised, and the high quality of disability support services might be a factor working in the opposite direction. Nevertheless, the indirect evidence strongly points to there being relatively high numbers of young and young adult carers in the North-East. It also points to these carers being highly vulnerable to a cycle of high underemployment, extended educational transition, and longer periods of dependency on the family of origin. The next section will explain how the Labour Government of the time attempted to help disadvantaged members of the younger generation. The policy aim was to enable such young people to prepare themselves for more self-sufficient adulthoods than had been achieved by similarly disadvantaged members of the previous generation.

2.3: The policy and practice context 2.3.1: Policies of the Blair and Brown Governments The Blair (1997-2007) and Brown (2007-2010) UK Governments put considerable effort and expenditure into trying to intervene with both children in ‘hard-to-reach’ families and vulnerable young adults, with the aim of bringing more young people's lifestyles and outcomes into the 'normal' range. For example, decreasing the number of children living in workless households was seen as crucial to breaking the intergenerational cycle of poverty. The key policy, Every Child Matters (DfES 2003), was spurred on by fear of extremely adverse outcomes following the Laming Report into the death through brutal child abuse of Victoria Climbié. However, the idea that disadvantaged children's lives needed to be improved in relation to critical indicators of health, social and emotional development, education and safety predated the report.

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Simon and Ward (2010: p1) discussed the earlier social democratic approach, which in some ways was undermined by Every Child Matters.

The thrust of social policy reform was to break the generational cycle of deprivation into which children and families can become trapped.

Every Child Matters recommended measures designed to protect, encourage, and give a sense of responsibility to children of all social backgrounds. It was organised under the headings 'enjoy and achieve', 'stay safe', 'make a positive contribution', 'be healthy', and 'achieve economic wellbeing'. The first four of these objectives applied to children of all ages, but the last one was aimed specifically at improving children's transitions to adulthood through advice and guidance. Institutions could be inspected under the Every Child Matters framework on their provision for young people aged up to 25 if their client group was considered vulnerable on account of living in residential provision, or being physically, mentally or socially disadvantaged (LSIS 2011).

Simon and Ward (2010) argued that, despite some admirable features intended to ensure genuine improvement of life chances for deprived and at-risk children, the policy was not primarily concerned with enhancing shared parenting between all parents and the state in order to get the best for every child, as might be seen in Scandinavian countries. Instead, it targeted specific groups of parents, for example heroin addicts and those deemed to pose a risk to their children.

Above all, the five outcomes are about interventionist strategies to promote social norms. (Simon & Ward 2010: p.44).

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Simon and Ward (2010: p44) termed this approach the 'risk and standards model'. However, this model was a response to a national scandal around a child’s death in horrendous circumstances. In contrast, the original Blair Government’s aims for children were, according to Simon and Ward’s analysis, based on social democratic principles.

Thomas and Hocking (2003) compiled a detailed report looking at Labour's policies in relation to their likely impact on quality of life, which they defined in terms of individual standard of living, shared resources, happiness and emotional well-being, and trust and inclusion. The report identified that, while overall standards of living and personal safety had risen for children, the lack of shared resources meant that the have-nots missed out on common childhood experiences. For example, whole schools full of pupils used to get to school by walking through their local communities, often passing local hubs of adult activity. However, their transport to school subsequently became segregated by class. Meanwhile, Simon and Ward argued, life has become more emotionally demanding for children due to a high family breakup rate, house moves, changes in childcare and exposure to a variety of media. Families have compensated by communicating more openly with children, but this shift has not been matched with a similar openness from the education system or commerce.

There is less evidence to ascertain how much children generally have been segregated from social capital and informal gift exchange, both forms of mutuality. Some research does suggest that there may be an increased danger of becoming a victim of abuse or neglect by a family member if one is cut off from having either a community profile at the street and local shops level, or influence in wider society (Simon and Ward 2010: p40). Also, responsibility for children has become fragmented into contradictory categories, with commercial organisations such as the web-based media telling children that they have almost unlimited choices, and governments trying to control children, expecting them to conform (Simon and Ward 2010). 19

Simon and Ward further argued that the risks and standards model upset the balance between adult guardianship and children’s freedom to learn, and led to a colonisation of childhood by supervising adults. Childhood had formerly been a time for children to interact as children with a whole range of people in society. The resulting void could only be filled by the commercialisation of childhood. Simon and Ward concluded that the compartmentalisation of risk, centred on pre-identified risky individuals, does nothing to tackle the low status of children. Instead it results in the wider community being viewed primarily as a source of risk.

It has become the exception rather than the norm to find children playing freely in open spaces. This has threatened the adult-child relationship in the wider community in that children are no longer expected to view adults as responsible and helpful, but as a potential menace and threat, even though most child abuse or abduction occurs within the close family network. (Simon and Ward 2010: pp38-9).

Simon and Ward suggested that the ethics of care model should be applied to both children and adults. This model states that people can only become independent and responsible through participating in social networks. They argued that personal ‘responsibilities are embedded in familial, social and historical contexts’ (Simon and Ward 2010: p41, paraphrasing Held 2006).

The most notorious measure that was brought in by the last Labour Government in terms creating a fissure between generations was the Antisocial Behaviour Disorder (ASBO). This measure effectively criminalised the street corner society that less advantaged young people rely on for open-air activity and out-of-school peer association. The measure was not designed to target children, but led to many notorious cases of mentally disabled and disadvantaged youngsters being restricted from day-to-day life activities by ASBOs. Research based on highly structured 20

interviews with parents, observations of children and the gathering of related attainment data on individual children, the Effective Pre-school and Primary Education study (Sylva 2004), found that educational success for children in the poorest areas depends on their parents keeping them completely clear from out-ofhours association with children and youths in their local communities. The study was, in effect, suggesting that street corner society has become toxic.

There is some evidence that disadvantaged youths were viewed by the Blair Government in a less hopeful way than were younger disadvantaged children. Youth Matters (DfES 2005) was the counterpart for young people in transition to adulthood of every Child Matters. However, the Green Paper did not recommend working with youths through multi-agency, multi-site initiatives along the lines of Sure Start. Instead, the Green Paper focussed on changing individual youth behaviours, such as bullying, through positive incentives, for example points cards, that could be spent on leisure activities. The consultation response to Youth Matters was extremely negative. For example, the British Psychological Association said that the proposals showed no understanding of teenagers’ emotional, as opposed to material, wants and needs.

The Youth Matters approach was more-or-less dropped by Gordon Brown. Instead, Brown focussed on raising the aspirations of disadvantaged youth, for example by providing in-depth advice to young people at risk of becoming NEETs. This measure was part of a programme of progressive universalism, whereby success was to be measured by the extent to which the least advantaged were brought up to the level of the average young person (Children and Young People Now 2007). However, the Brown Government did not specify how they were going to close this gap, especially for deprived pupils among the least academically able 50%.

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2.3.2: Youth policy and the individualisation of risk The Blair Government’s policies towards youth appear to have been based primarily on an individualised view of risk and attainment. From this perspective, individuals are only expected to choose that which they can personally own and capitalise on; and even volunteering should be based on enlightened self-interest. The ethics of care for its own sake were thoroughly devalued (Lynch 2005). The Thatcher, Major and Blair Governments accepted individualisation as a positive phenomenon. This position was predicated on the assumption that we now live in a classless society, divided only by some individuals lacking the right type of motivation, or facing specific personal barriers such as having a ‘bad’ teacher (Jones 2005: pp2-3; BBC 1999).

The Blair Government’s youth policy became increasingly focussed on supporting young people through the personal aspects of transitions, while viewing the social and biological aspects as background factors which might help or hinder this process. Moreover, the few social aspects which did get mentioned in Government policy documents tended to be at the level of families and communities. Macro-level factors such as the availability of jobs, affordable housing and benefits tended to be ignored (DfES 2005; France & Wiles 1997). On the other hand, Labour did introduce the Education Maintenance Allowance (EMA), which would have appeared like an almost universal 16-18s benefit to young people living in working-class boroughs with a high take-up of further education.

As mentioned in the previous section, the Labour Government’s policies did help to yield relatively low NEET levels for the North-East. The subsequent Conservative/Liberal Coalition Government raised the educational leaving age to 18, which should have done away with 16-18 year old NEETs altogether. However, they have made this change in a way that would place great strains on families affected by disability. The Coalition Government abolished the EMA, which paid young people to regularly attend their courses; and cut Connexions, which was designed to ensured that information on transport etc. needed for course attendance, was 22

provided. All 16-18s being in education should at least entitle parents to continue to continue to receive any tax credits and child benefit paid in relation to children aged under 16. However, tax credits have also been cut. Overall, the extension of compulsory education to the age of 18 cuts off options for financial survival for families affected by disability, such as having the young person become a full-time carer at age 16 on Carers Allowance (see below). Carers Allowance itself may be means tested under Universal Credit (Macleavy 2011).

2.4: Carers legislation and services for carers Having summarised youth policy at the time of data collection (2008-2010), I will now review legislation and policy concerning carers. The 1995 Carers (Recognition and Services) Act gave carers aged over 16 a right to a separate assessment of their own needs. These provisions were brought in to bridge the gap left by the NHS and Community Care Act (NHSCCA) (1990). The NHSCCA gave carers legal recognition for the first time, but took away the remit of social services to meet the needs of ‘whole families’. Carers aged 16-19 also became eligible for support as Children in Need (Thomas et al. 2003). It was never intended that all of the three million children in the UK who have disabled family members be defined as children in need (Bibby & Becker 2000).

Young and young adult carers belong to the ‘army’ of informal carers. Their experiences of services follow on from the historic moment in 1990 when the NHSCCA reportedly ‘raised the profile of carers’. At the same time, it made ‘their needs more difficult to meet in the short term’ due to a decrease in the flexibility of tools available to social workers (Unell 1996: p9). However, an evaluation by Roulstone et al. (2006) found little evidence that the NHSCCA had had any practical impact on the support that carers receive.

The most visible form of support for carers, led by the voluntary sector, has been carers’ centres, which were established in the 1990s. Their aims are: to explain the needs of carers to other services; to organise social activities for carers; and to 23

support and advise carers about specific processes and entitlements, for example, applying for grant funding for their families from charities. carers’ centres soon began to develop young carers’ projects. These projects were set up in response to feedback from sick and disabled people that their school-age children were doing much of the required care (personal communication from Blissability service manager 2009). Local authorities began to receive ring-fenced money for such projects after The National Strategy for Carers of 1999 was implemented, although some have awarded the contracts for these projects to children’s charities rather than carers’ centres. The National Strategy also stated that social services must use partnerships with the voluntary sector to meet their statutory responsibilities to young carers as ‘children in need’ under the Children Act 1989 (DoH 1999).

As stated above, some disability services had identified the caring tasks being taken on by the young during the 1990s. However, these activities were made ‘visible’ to policy-makers and the general public primarily through the efforts of one group of researchers based in Loughborough (Thomas et al. 2003). Nevertheless, the Loughborough research, reviewed in the next chapter, has arguably been one-sided in its focus on the no doubt valid, but unavoidably limited, perspectives of current young carers and children living in environments where care is taking place. This research did not pursue the equally revealing study of parents cared for by children (Aldridge & Becker 1994), discussed in the next chapter. There has been an almost equal amount of research and analysis in response to the Loughborough Group’s work from disability rights campaigners. They have argued that the problems associated with care-giving by young people should be tackled by targeting resources towards support services that are suitable for disabled parents with children, thereby reducing the need for children to be in such roles (Olsen & Clarke 1996; Morris 1993). There have also been some illuminating small-scale studies (Tarapdar 2007; Thomas et al. 2003) which have revealed that, although young and young adult carers have demonstrable needs for support, they are also firmly opposed to the notion that they are victims in need of rescue. However, neither Thomas et al. nor Tarapdar contextualised their conclusions in terms of social class and gender (see Chapter 3: Literature Review for a detailed review of the above studies). 24

Meanwhile, feminists, with the exception of Morris (1996), have so far been silent on the issue of young and young adult carers, despite having a great deal to say about the role of patriarchal, heterosexist systems of family policy in forcing females to undertake isolating, poorly rewarded and exhausting caring roles (Charles 2000; McKeever 1999; Fraser 1997). Pro-feminists such as Connell have generally assumed that men are mostly excluded from what Talcott Parsons termed ‘expressive roles’, even if they do embody non-hegemonic masculinities (Connell 2005). None of the above theorists have addressed the differences that researchers have identified in the carer role and coping styles of older people who are carers, as compared to middle-aged, young and young adult carers (Grant & Whittell 2000). Grant and Whittell themselves have explained differences in terms of life-stage and generational attitudes, rather than people's positions within society and social policy systems (see Chapter Four: Review of Additional Relevant Literature).

Very little research has been undertaken on young adult carers, in the 18-25 age group, apart from one qualitative study (Becker and Becker 2008), which is reviewed in the next chapter. There is a general consensus about the following: the high prevalence of 16-18s providing an hour or more of primary or secondary care per week; the fairly high numbers providing 50 or more hours per week; the relatively poor outcomes for children involved in caring for substance misusing or mentally ill parents; the consistent messages that young people with substantive caring responsibilities give about the support that they would like to receive; and the long term psychological difficulties arising from not having had their caring role recognised (Dearden and Becker 2002; Statham 2002; Frank et al. 1999).

The Social Care Institute for Excellence (SCIE) have produced a useful research briefing for professionals (2005), which shifts the emphasis somewhat from the children's support versus disability support debate, by pointing to the harmful effects of the stigmatising attitudes expressed by some professionals. The briefing 25

concluded that young and young adult carers are a diverse group, whose health and wellbeing cannot be predicted in terms of the amount or type of care they provide. However, there is, nevertheless, overwhelming evidence that the taking-on of a caring role does impact substantially on young people's physical, emotional and social health. Those who have had specialist support say that they prefer young carers’ project because of their non-intrusive approach, and lack of statutory associations (SCIE 2005: p1).

Even where social service intervention is necessary, some have argued that the treatment of disabled parents has been too heavy-handed. Booth et al. (2006) noted that the Department of Health’s Assessment Framework for children in need (DoH 2000, cited by Booth et al. 2006: p1010) clearly states that the most effective means of promoting the welfare of children is to make reasonable adjustments to the normal standards by which the adequacy of parenting is judged. In relation to their example of parents with learning disabilities, they argued that social workers are not taking, and perhaps cannot take, the time to allow those parents to understand the information about what needs to change with regards to their parenting. On the basis of interviews with front-line Children and Family Social Workers, they argued that there has been an overzealous interpretation by social services departments of the principle that the welfare of the child is paramount with respect to decisions that are to be made about residency and contact (DoH 1989). This approach has been combined with the belief that delays in care proceedings harm the child, and a model in which increases in social work involvement are used as a threat. The overall result amounts to ‘temporal discrimination’ against families headed by a learning-disabled parent (Booth et al. 2006: p997).

An unusual feature of the Loughborough Groups’ work, given the stated emphasis on evidence-based policy of the last Labour Government (Bochel 2004), is that the issue of young caring was first highlighted in qualitative research. The recommendations adopted by policy-makers, most notably that of ring-fenced funding for young carers’ projects, have come directly from such research (Alcock 26

2004; Aldridge & Becker 1994). Census and survey data have been mostly secondary in these studies (Becker & Becker 2008; Dearden & Becker 2004). However, the Children Act of 2013 did refocus efforts on contacting all young carers via identification and assessment, rather than through projects designed to meet collective needs.

2.5: Class and gender context: Specific studies of inter-generational relationships (the USA and Scotland) As Lynch (2005) pointed out, every person spends periods of our life being in need of care. Moreover, almost everyone will interact at some times in their lives with close friends and family members who are in need of care. Even in their youth, most people acquire some informal specialist knowledge of one or more particular type of need, whether it be the needs of older people with dementia, of a neighbour in crisis, or of younger siblings and cousins. However, the ways in which such experiences affect our transitions to adulthood are likely to be affected by gender and social class.

Since Willis (1977) published his research, there has been recognition that class background plays a role in determining the ways in which young people engage with whatever educational opportunities are available to them. Willis’ ethnographic study of a working-class school uncovered rebels who were only interested in the informal aspects of school; instrumentalists who expected little from school other than the opportunity to gain qualifications and access their desired occupation; and conformists who wanted to experience school in the traditional middle-class sense of being led and inspired by their teachers. Willis is now thought to have over-focussed on the relatively small groups of rebels, at the expense of fully understanding the instrumentalists who did, and still do, dominate the working-class pupil/student population (Macdonald 2005). In contrast, middle-class parents are able and willing to exert influence on the type of education that the school is offering (Payne 2003).

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The Blair Government challenged the idea that it was ‘normal’ and unproblematic for children from working-class backgrounds to have instrumental attitudes to school and qualifications, and instead expected them to engage as individual learners. Part of Blair's defence of this approach was that other working-class consumerist policies, such as the Right to Buy council houses, had actually been very popular. Blair stated early in his career that he did not believe that ‘ordinary’ working-class people were willing to give up individual rights, such as the Right to Buy, in favour of collective class interests. Blair himself came up with the term ‘Third Way’ to describe the idea of an efficient, accountable state which acted in the interests of the whole community to solve society’s problems without pandering to the ‘vested interests’ of either unions or companies (Rentoul 2001). Even those formerly prejudiced by ‘vested interests’ were to benefit from the steady reduction of social problems, to be achieved by the enabling state partnered to a distinctive but vision-sharing voluntary sector (Alcock and Scott 2002).

The Third Way ‘acquired intellectuals such as Anthony Giddens as supporters. It was as much ‘process as prescription … destination unknown’ (Rentoul 2001: p172). Giddens’ writings initially focussed on broader issues around the future of social democracy in Europe (Giddens 1998). It was only later that he became a specifically New Labour writer. Whatever the destination, the distance already travelled with respect to the politics of social class was clear. Everyone was supposedly playing the same game in the new 'information economy'. In consequence, class interests were now considered irrelevant. Government’s role was to give a 'hand-up' to those who were struggling to attain on the playing fields of education and high quality employment. Their struggles were assumed to be due either to bad schools, or to deficiencies in own their circumstances or personal characteristics. Therefore, governments needed merely to enable people by removing the barriers posed by prejudice and lack of individual support (Riddell et al. 2001).

Mentoring is one of the interventions which has been advocated as a means of helping working-class youths achieve middle-class goals. Discussions of mentoring reveal much about the specifically British class-divide in attitudes to education, and 28

about the extent to which policy-makers place the blame for that divide on workingclass communities and stakeholders. Mentoring, as advocated by Philip (2003), is based on the principle of providing the young person with opportunities for a ‘common sense’, trusting relationships with a dedicated adult from outside of the family, who is not distanced by being a professional, and who may have experienced difficulties earlier in their life.

US research suggests that someone in a very hierarchical professional role in relation to the young person, e.g. their teacher, might enter into a mentoring type relationship with respect to extra-curricular activities that involved giving something to the community (Checkoway & Richards-Schuster 2003). Overall, Checkoway (1999) identified four ways in which professionals can work alongside young people in the context of community development: citizen action; youth action; youth development; and neighbourhood-based youth initiatives. He challenged the assumption that young people opt to undertake activities in, and for, their communities primarily because of youthful enthusiasm or naivety. Instead, he argued, youth should be viewed as a time when one is stuck in the local community due to lack of transport, particularly if one is from a low-income family. Young people may make observations in the surroundings in which they find themselves, and acquire local knowledge which allows them to help local people. They may be genuinely motivated to make positive contributions, but will not necessarily do so in their place of choice. Checkoway found that young people's interests and sites of social consciousness tended to be broader than those of adult activists, and would very often be global. There is also a growing consensus in the business world that ‘digitally native’ young people, who have grown up in the era of internet technology, are better placed than mature adults to design multi-organisational, multidisciplinary initiatives for dealing with global problems such as food waste (Clayton 2014).

Oversimplification of views about community-active youth does not stop at the false assumption that there is an enthusiasm among youth for ‘community’. The dominant model for mentoring disadvantaged youth is inherently patronising and negative. The 29

model is aimed at breaking such youths out of their current ways of thinking. It is driven by the assumption that horizons are limited by working-class biases towards confining oneself to one’s own community. Some advocates of mentoring state that the mentor should be someone with higher social capital, meaning a higher social class background, than the mentee (O'Hare 1996; Coleman 1991). O'Hare (cited by Philip 2003: p106) even suggested that mentors can provide 'a tour of middle-class life'. Thus, the model assumes that working-class youth are in a state of deficiency, with no relevant knowledge of the world to offer others.

Philip (2003) specifically addressed the lack of academic knowledge about UK youths’ intergenerational relationships. She considered this issue, in the light of her findings concerning ‘natural mentors’ in Scotland, in a discussion of the UK Government’s plan for a transfer of US policy initiatives on mentoring. The research was based on group and individual interviews with a ‘wide range’ of young people, a purposive sample of 150 respondents who were 13-18 years old. Sample members ranged from those who had not been socially disadvantaged to those who had been in care. She also carried out separate individual interviews with the adult mentors of the same young people (Philip 2003: p109; Philip & Hendry 1996). The research differed from previous studies of mentoring, which had been mostly retrospective, in that it was based on interviews with contemporary mentors and mentees. In relation to negative peer influences, the young people insisted that they had the ability to make judgements about whom to trust and whom to avoid. They believed that bad group influences came down to the fact that ‘everyone’s as bad as each other … they’ve all got their bad points’ (Philip & Hendry 1996: p197). In effect, Philips argued that policy-makers’ understandings of youth support interventions were based on a deficit model of young personhood. She maintained that it would be more realistic to view young people’s supposedly deviant or inadequate values and behaviours as an extension of societal values. Their dependency on adult support could be due to circumstances as well as inexperience. The respondents accounts:

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challenged orthodox perspectives on youth mentoring for having failed to take account of the social realities of the lives of young people … [The research] concluded that mentoring is more usefully understood as a set of processes rather than as simply a discrete relationships between an older more experienced guide and an inexperienced novice …The use of a feminist lens to critically examine mentoring processes demonstrated the need to evaluate taken for granted assumptions about race and class in addition to gender in theorising mentoring (Philip 2003: pp110-111).

In other words, mentoring does not happen in a vacuum. The inequalities that impact on mentor and mentee outside of the mentoring relationship also affect the fundamental nature of the mentoring relationship itself. With regard to the most disadvantaged young people, Philip (2003) argued that intergenerational relationships should be viewed with the same level of scrutiny that we apply to adultadult relationships. She found it particularly concerning that mentoring was being suggested as a way of building mid-childhood resilience in disadvantaged young people whom Philip, and other researchers, would deem to have already missed out on ‘normal’ opportunities to learn about emotional stability from their parents. She cited a whole body research which suggests that such resilience is associated with the challenging of traditional gender roles. This challenge involves girls being invited to become more autonomous and less selfless, and boys to become more expressive and nurturing. However, there is no reason to think that community mentors will refrain from reinforcing traditional roles.

Philip's findings pointed even more strongly towards two-way intergenerational exchange, although not necessarily mutuality, in relation to 'natural' mentors’ own perceptions of themselves. The mentees felt that mentoring relationships were primarily about mutual enjoyment, and providing a way for them to make use of someone with adult status and knowledge on a mutual basis (Philip & Hendry 1996). In contrast, the mentors viewed such relationships as of direct benefit to themselves. In particular, they talked about how mentoring a young person helped them to 31

understand their own past experiences, build up their own networks, and develop their own skills as 'exceptional adults' with the ability to help others (Philip and Hendry 2000: p217). Such relationships were found to come with an element of risk for the young person. Risks arose through the potential for the mentor to abuse or exploit the situation. Another concern was the emotional impact of being asked to build another time-limited relationship on young people from unstable backgrounds who had already experienced 'a succession of adults intervening in her/his life' (Philip & Hendry 2000: p222). This analysis illustrates that a young person’s perception of mutuality may mask a situation in which they are being exploited by the older person, or at least being given an unequal exchange of favours.

Jordan & Jordan (2000) specifically counselled against the transfer of the US volunteer mentor approach to the UK context, on the grounds that communities of interest and intergenerational relationships work differently in the UK. They argued that New Labour assumptions about why American interventions work with disadvantaged US youth were misplaced. In their long and detailed analysis of evidence about the role of ‘tough love’ in social work, they argued that the American approach relies on communities of interest, through which practitioners can feel that they have personal knowledge about service-users.

There is a tradition, an approach and a method that has flourished in the USA – in ‘drugs courts’, for example, where vigorous, energetic judges (often Black women) confront, challenge and harry somewhat crestfallen junkies into reforming their ways, using peer pressure as well as exhortation, shaming and comforting. Similarly, there is a culture of street-level work with homeless people, alcoholics and addicts – that relies on tough-and-tender methods, by getting alongside lost souls and helping them back into the mainstream. But these traditions are strongly based on personal charisma of a kind that is rooted in certain aspects of US culture, notably evangelical Protestant churches, cults and prayer meetings … it is far from clear how easily these

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practices can be transplanted into the more reserved and ironic British culture. (Jordan & Jordan 2000: p29, my emphasis).

In other words, it is highly unlikely that the mutual intergenerational relationships that have been described by Philip will ever have the same positive impact on UK as on US youths. Jordon & Jordan (2000) argued that the best forms of intergenerational collaboration might be achieved by working against, rather than for, the ‘mainstream’. They proposed that if professional practice in the UK is genuinely to be about ‘tough love’, then it must stop colluding with inflexible, one-size-fits-all agendas based on the time-frames and abstracted targets of government.

In summary, mutuality and reciprocity are not necessarily positives in the lives of young people. My focus on these concepts in relation to young and young adult carers should not be seen as an attempt to present their caring roles in a positive light. The concepts are instead important in attempting to explain both the positive and negative motivations of young and young adult carers when they make lifecourse decisions that involve interactions with the adult world of educational institutions, employers and care services.

2.6: Conclusion The austerity policies implemented by the 2010-2015 Coalition Government, and continued by the Conservative Government which came to power in 2015, have led to severe cutbacks in local services which have been most severe in the poorest areas. If there are no longer to be any resources to support disadvantaged young people, then what is the point of critiquing the preceding Labour Government’s generally well-meaning attempts in this area?

The reason that this topic does remain relevant is that future practitioners and policymakers need to start looking at the relationships between practitioners and clients, 33

and within families and communities. They need to move away from looking at the snap-shot surface characteristics of clients, such as whether they live in a single parent family, or have a certain category of ‘disease’. They should move away from targets based on categories of deviancy. The situation of young people like those described in the present study is likely to have worsened since my fieldwork was completed in early 2010. Much of this worsening will have resulted from the withdrawal of financial and professional support to children and young people, and the cutting of financial support to disabled individuals, families and carers (Action for Children 2013). The Children’s Society (2013) is particularly concerned about the impact of the removal of funding for homecare on young carers who rely on a few hours a week of provision to cover their time in education and other activities.

The issues which remained despite the availability of support will continue to be present, and will need to be taken up again in the future. The story of UK families in the noughties, a period of strategic and holistic family intervention, should not be left to be told decades in retrospect. The time to realistically assess New Labour support for groups like young carers is now.

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Chapter 3: Literature Review: The Research Literature on Young and Young Adult Carers, and its Applicability to their Intergenerational Relationships

3.1: Introduction The previous chapter showed that, while disadvantaged youths are more likely to acquire informal specialist knowledge of older adults, they also tend to have that informal specialist knowledge ignored, stigmatised or exploited. The following chapter will look specifically at the literature on young and young adult carers, to see what is known about their relationships to generations older than their own. Only the literature on physical and learning disabilities will be considered, as the phenomenon of caring for someone whose primary problem is mental health and/or substance abuse lies outside of the remit for this thesis. This chapter, the first of two reviewing the literature, will cover the most directly relevant studies in two sections, concerned with young carers and young adult carers, respectively. The former is divided into four sub-sections, which relate each piece of research to an era of relevant policy. These eras are outlined below.

A) The era in which both Liberal and Labour Governments were influenced by Fabianism and socialism oriented towards a male breadwinner. This approach was based on the assumption that men should be supported by the state as workers, and women as housewives, mothers and carers. This was essentially a period effect (from 1905 to 1960) that impacted equally on all families, regardless of the age of the mother, or whether she had been brought up in an even earlier period (Misra 1998).

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B) The era of Labour and Conservative consensus in government. This era of government (from 1960 to 19881 ) was influenced by a feminist critique (Friedan 1963) of the assumption that women should be content to be housewives and mothers. During the period in question, cohort effects were particularly relevant in terms of the ways that women, and men, viewed their roles within the family, and with respect to whether they had been able to delay having children using new forms of contraception (Lewis 2002).

C) The era of the NHS and Community Care Act (1990) During this period (from 1990 to 1995), informal carers came to be officially recognised in social workers' assessments of chronically sick and disabled people’s needs. At the same time, the state was withdrawing from meeting those needs, increasingly leaving family carers to take responsibility instead. This was essentially a period effect, although working age people may have coped better with the change than those who were older (Grant & Whittell 2000).

D) The era from the passing of the Carers (Recognition and Services) Act (1995) to the age of austerity (2010). The discourse on carers changed in the late '90s, with carers over 16 being given the legal right to an assessment of their own needs in 1995 through the Carer’s (Recognition & Services) Act. Carers became a recognised group in themselves, rather than being merely a feature of community care cases. Young carers were officially recognised as being in need of support from schools and other agencies through the National Strategy for Carers in 1999. However, these positive change in provision for carers in policy and legislation happened to coincide with a negative change in attitudes towards young people in general. Attempts to develop evidencebased policy (EBP) gave rise to an approach favouring targeted ‘early intervention’ designed to prevent future social problems. It replaced earlier principles-based approaches which were based on either entitlement or deservedness. The start of Thatcher’s flagship social policies – the Housing Act 1988, Children Act 1989 and NHS and Community Care Act 1990 – took some time to materialise after she assumed the office of prime-minister, therefore delaying the end of this era. 1

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the era in terms of EBP was marked by a report from the USA by Sherman et al. (1995), which was frequently cited in UK government documents, for example one commissioned by the Home Office (Tilley and Laycock 2002). The US report suggested that the some of the most promising forms of crime prevention were schemes which targeted vulnerable youth, thereby further linking 'underclass' parenting with perpetrators of crime (Macdonald 1997). Young and young adult carers were increasingly seen by many of those in power as victims either of ‘underclass’ parents affected by at least partly self-afflicted health problems, or of long-term disabled people who should never have had children. This can be seen, for example, in the placing of young and young adult carer participants by conference organisers in the same group as participants who were in the care of the local authority (personal communication from young carers’ worker, 2008). The above observation highlights the conference organisers’ assumption that parents who ‘exploit’ young and young adult carers are part of an ‘underclass’ afflicted by emotional, material and educational deprivation. Otherwise, young and young adult carers would be placed with other types of groups of young people with home responsibilities, such as young family business workers, whose families are very often wealthy.

Since each micro-generation of young and young adult carers was being targeted by more and more policies year-on-year, this era was one in which cohort effects became at least as significant as life-cycle or period effects.

E) The era of austerity: May 2010 to present At the time of writing, in June 2015, the concept of the state as co-parent seems to be on the decline in the UK. The Coalition Government openly admitted that its economic policies were aimed at male rather than female employment (MacLeavy 2011). This Government did, however, strengthen legislation around the rights of carers to support for themselves, through the Care Act of 2014 (Carers Trust 2014). Family members who are at the stage of intending to provide care, and those who have provided care only intermittently, will now be entitled to a carer’s assessment. The focus of service provision will be on preventing a deterioration of the carer's 37

circumstances to the point where they require services such as mental health care. Local authorities will be required to provide carers with information about the full range of available services. Carers must be offered advocacy services, and the Act makes specific provision for young and young adult carers at transition ages. The Coalition Government also freed up resources for respite care, and took action to help families to purchase care, rather than rely on a family member. In terms of the state meeting care needs, however, there has been a 'hollowing out' of provision (Burchardt et al. 2015: p13), which is likely to accelerate following the election of a Conservative Government in May 2015. Sick and disabled adults are now more likely to get help with preventative measures designed to help them to stay independent, than they are with meeting already existing non-substantive care needs (Burchardt et al. 2015). The meeting of substantive care needs partly involves the raising of means-test thresholds, which will not benefit carers for the poorest elderly and disabled people, but may well lesson the need for grandchildren to provide care in exchange for keeping the family home. Additional relevant policies are as follows:



Significant relaxation of the capital means test for residential care, announced in the March 2013 budget (Burchardt et al. 2015). This change may decrease the number of people who need residential care being cared for in their own homes in order to save money.



A lifetime cap on care costs (Care Act 2014, cited by Burchardt et al. 2015). This change may also decrease the number of people opting to be cared for by relatives in order to save money.



New national criteria for social care eligibility based on levels of need, documented in regulations following the passing of The Care Act of 2014. These criteria replace locally determined ones for defining substantive need. In practice, this change has meant that local authorities who formally opted to meet 'mild' or 'moderate' care needs now only meet 'substantial' ones. In consequence, the criteria have only benefited service-users in areas that had for a long time only met 'substantial' care needs, as more generous criteria are now used to define 'substantial'. 38

o

Integration of health and social care through Health and Well-Being Boards is designed to generate more pooling of existing NHS and social care resources (Burchardt et al. 2015). This change should decrease the need for carers to fill the gaps between health and social care services.

o

Local authority responsibility for continuity of care (Care Act 2014, cited by Burchardt et al. 2015). This change should also decrease the need for carers to fill the gaps between health and social care services.

o

Extension of the right to request flexible working to all employees. This change should mean that working carers should no longer need to tell employers about their care responsibilities in order to gain the flexibility that they require in order to balance work and caring (Burchardt et al. 2015).

o

The Adult Social Care Outcomes Framework. This framework was designed to ensure that councils can be compared on effectiveness, and supported to improve across the four domains of safeguarding, enhancing the cared-for person's quality of life, preventing future care needs, and ensuring positive experiences of care and support (Burchardt et al. 2015).

o

A new inspection regime by The Care Quality Commission, from 2013 (Burchardt et al. 2015).

It is likely that the situation of young people like those described in this study will have worsened since my fieldwork was completed in early 2010, although the measures designed to prevent people initially needing care may have reduced the numbers of new cases. There can also be little doubt that much of this worsening has been due to the withdrawal of financial and professional support to children and young people, and the cutting of financial support to disabled individuals, families and carers (Action for Children 2013). The Children’s Society (2013) is particularly concerned about the impact of the removal of funding for home care on young carers who rely on a few hours a week of provision to cover their time in education and other activities. Many of these carers will live in families where parents and other adults either do not work, or have had to reduce their hours of work to deal with the 39

impact of a family member’s disablement (Roulstone 2005; Olsen & Clarke 2003). Inwork and out-of-work benefit cuts, the abolition of the Education Maintenance Allowance, and the cutting of youth services and young carers’ project will all have affected young carers significantly. Most families will not have been able to afford to replace these resources and activities from private funds.

Young and young adult carers in low income families will also have been dealing with the impact of the ‘bedroom tax’ and other housing benefit rule changes on their opportunity to leave home and maintain a partial caring role, particularly if they are aged over 21 (National Housing Federation 2014). If they leave home, their parents may be forced to downsize or take in a lodger, and will no longer have a bed for occasions when the young adult carer is needed to stay overnight. This shift may put young adult carers off from making the first steps towards housing and relationship independence. Previously, it would have been easier for them to move in with their partner or partner’s parents, move to a different town to go to university, or get a homes of their own (Becker & Becker 2008; Henderson et al. 2007). Above all, government cuts to disability services will inevitably mean that young and young adult carers will have to take on more responsibility (Children’s Society 2013).

3.2: Findings about young carers in the era of male-breadwinner based socialism and Fabianism (1905-1960) The earliest description of a young carer that I could find in a research report comes from a Fabian, Maud Pember Reeves (2008/1913), in her longitudinal study based on interviews, diaries and observation, and entitled ‘Round about a Pound a Week’. The study was carried out through case studies of 42 ‘respectable’ but poor households in the Lambeth area of London, a non-industrial area where most of the employment was exclusively male, and connected to shops and trading. The research was concerned with the dynamics of poverty, and based on 42 female householders who had just had babies. The women completed diaries of weekly income and expenditure, and underwent frequent researcher observations and 40

interviews. The research was carried out over the period from each baby being three months to a year old.

Pember Reeves depicted a 10 year old helping her 'half-blind, half-deaf mother'. The girl’s situation was portrayed in order to give an example of how a ‘respectable’ but poor family street could produce surprising young characters. It was not seen by the author as an example of child exploitation or lost youth. The child was described as not only having a different role, but also being of a different character, to other children in the street, due to the closeness between her and her mother.

She had a dog-like devotion for a half-deaf, half-blind little mother, who nevertheless managed to keep two rooms, a husband and six children in a state of extraordinary order, considering all things. When Emma's school shoes were worn out, her mother took them over and wore them until there was no sole left (Pember Reeves 2008/1913: p175). Although Pember Reeves’ language may come across as patronising to the 21 st century reader, she did not mean to be stigmatising, and was trying to convey admiration for both the girl and her mother (Toynbee 2008). Like today's young carers, Emma was to experience a dilemma about whether to retain her caring role, or pursue the ‘normal’ child-young adult transition. However, ‘normal’ in those times meant becoming a breadwinner on behalf of her family of origin.

Emma's mother found her a great comfort, and very reluctantly sent her to work in a factory at the age of fifteen. There she earned 6s a week, and became the family breadwinner during the frequent illnesses of her father. (Pember Reeves 2008/1913: p175).

In striking contrast to today (O’Dell 2010), there was no abnormality or stigma attached by Edwardians to young adults either working to support their disabled parents, or staying at home to assist and care for them.

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Nearly thirty years later, in Margery Spring Rice’s (1939) survey and observational study of 1,250 working-class wives from across England, both author and respondents clearly articulated the assumption that younger children should be instructed in the carrying-out of shopping and household tasks. This instruction would prepare them for future times when the mother might be too ill or overwhelmed to take care of home and family. Spring-Rice saw it as unfortunate that such instruction at a young age was not possible in most families.

It is very unusual to find mention of a child being kept back from school to do some work that the mother is too ill to do. Only a few mothers speak of training their children to help in the house as part of a regular routine – but this is probably less rare than it appears to be. It must be realised however, that any help that a child under twelve can give costs so much in supervision and probably worry for a careful mother, that she feels it is easier to send the child out of the way and get on with the job herself. This may be a short-sighted policy, but it is easily forgiven in the woman who has no time to organize or plan. (Spring Rice 1939: p105, my emphasis).

Spring Rice (1939) regretted the absence of practices that would now be seen as exploitative attempts to train children to work for their families, rather than for their own development. Spring Rice suggested later in the same book that the mother falling ill was the worst disaster that could befall a 1930s working-class family. It was to be considered as worse even than the husband becoming unemployed, or a child falling seriously ill. Having the children ready to work for the family was regarded as a good survival strategy for any working-class family, rather than being associated with ‘underclass’ values as it would be now. The type of analysis that Pember Reeves and Spring Rice gave of working-class families in general, in terms of the role of children in building the family’s capacity to cope, was no longer put forward in the post-war period.

For example, writing about the 1950s, at the height of post-war optimism about the welfare state, Young and Wilmott’s (1962) only mention of children’s domestic work was in the context of the challenges for housewives after extended families had been 42

broken up. Families on new estates struggled in ways that the researchers considered abnormal. Young and Willmott (1962) gave the example of a boy kept out of school to help look after his ill father, much to the distress of his mother. Similar incidents were not mentioned for girls, perhaps a reflection of societal bias towards noticing the 'lost childhood' of boys with home responsibilities, while taking caring by girls for granted. Their account conveys a belief that children will take on home responsibilities only in the event of unexpected crises. Moreover, this eventuality is linked to misguided actions by the state, such as housing those most dependent on extended family furthest away from them. The ‘natural’ state of families was assumed by Young and Willmott (1962) to be that wives and mothers carry out housework and caring, with the backing of their own mothers if necessary. The involvement of children was assumed to be unnatural, and a consequence of interference in the normal workings of kinship networks.

3.2.1: Discussion of research methodologies The Pember Reeves study focussed on one street in Lambeth, which had been purposively selected to represent 'respectable' families living on a typical, often semiskilled, steady working-class wage. The hardships being described included choosing between the avoidance of bad accommodation and too little food, and paying into extortionate funeral schemes as the only form of saving available. These hardships could not be dismissed by middle-class commentators as being unique to the most dysfunctional communities, or as a product of the mothers' working-class attitudes. Families with 'active or malignant disease in the parents' were excluded from the study. However, those with pulmonary and respiratory diseases were included as being within the normal range of health. The researchers had intended to include frequently drunk parents within the sample, but had found few of the men able to afford to be so. The report gave a good discussion of changes to the inclusion criteria on the basis of early findings of the research, and this enhances the dependability of the findings (Nelson 2008; Greenhalgh and Taylor 1997). However, refusals and drop-outs were not discussed. There is only one case of a young carer described, but others may have been found which were not considered worth noting under the theme of unique young personalities. Therefore, it should not be assumed 43

that this case is representative even of the young carers within Pember Reeves’ sample.

The Spring Rice (1939) study included a large sample which gave it high external validity in this respect. For such a large study, there was a surprising richness of observation, and lengthy quotations from the research participants. However, the reporting of the data lacks the analytical sharpness of Pember Reeves. Assumptions about cause and effect, for example that the children's lack of training to take on household tasks was the cause of family crises, were made without explanation. Spring Rice was asking valid questions about how children do or do not come to be young carers, but she did not provide sufficient analysis to make the reader confident that she had produced valid answers.

Finally, as the authors later came to realise themselves (Willmott 1986), Young and Willmott's (1962) survey was naïve in its assumption that a face-to-face questionnaire approach could reveal what social networks people had, and how much practical use those networks were. Enjoying and valuing relationships within a network is not the same as having the use of that network for practical help with a caring role. In their later study of care in informal networks, they found that people actively disliked calling on friends for help, as they preferred to keep those friends for enjoyment. Neighbours were only called only asked for help if respondents felt that they could reciprocate (Willmott 1986).

3.2.2: Transferability of findings to this PHD The case described in Pember Reeves' Edwardian study is relevant to young and youn adult carers today, as 10 year old children were then on the cusp of leaving school and getting a job, much as 18 year olds are now. Both boys and girls could earn enough to make a major contribution to family budgets from their time of first employment (Pember Reeves 2008/1913: pp175-177). Therefore, their being kept at home to care raised, in a purely material sense, as much, if not more, of a dilemma then than it does now. Also, as Polly Toynbee pointed out in the new preface to the 44

twenty-first century edition, the study provides a valuable reminder of how the privileged of any epoch tend to play down the struggles of the hard-working but marginalised poor, by claiming that poverty is only experienced by the unemployed. This view allows its proponents to contend that class is no longer relevant in the economy, and to deny the difficulties faced by underpaid workers.

Many of the family dilemmas and situations experienced then are comparable to those encountered in present times.

The Lambeth manual wage still falls below the official poverty line as it did back then … The working poor [now] are mainly single mothers working part time or adults in full time low paid jobs whose children are over 16, so they don't qualify for tax credits … Many low-income families pay into equally inefficient, non-interest-bearing Christmas clubs, [as] many working-class families still have no access to banks or loans at ordinary interest rates. (Toynbee 2008: ppxv).

The Pember Reeves study therefore provides a valuable lesson about the significance of both personal relationships and economic relations of social class in determining young carers’ biographies. In contrast, the Spring Rice (1939) and Young and Willmott (1962) studies are too weak methodologically to be seen as anything other than evidence of the attitudes of those eras. For example, the bias that is shown in Young and Willmott’s (1962) work towards regarding boys missing school to care as tragic, but girls in the same circumstances as problematic but relatively normal, also remains today. Half of all young carers’ project users are boys, despite census data suggesting that girls are more likely to be carers than boys (Dearden & Becker 2004). It is possible that this bias towards helping boys, rather than girls and disabled parents, might remain to this day. Such a possibility is relevant to this PhD study. It suggests that there is likely to be a major disagreement between carers and professionals on how family care needs are being met, and what relationships within families should be like. 45

3.3: Literature on young and young adult carers in the era of Labour and Conservative Government consensus accompanied by feminist critique (1960-1989) 3.3.1: Findings about young and young adult carers I could find no mention of young or young adult carers in literature written in this era.. Ungerson (1987) and Lewis and Meredith (1988) discussed young women being manipulated into a life of dependency on their parents or in-laws, so that they could become those people's carers when they became infirm. Lewis and Meredith mentioned parents persuading their daughters not to marry so that they could be retained for this role. However, the idea that children or younger adolescents might be manipulated in this way, or might already have caring roles, is completely absent from studies written up in this period. 3.3.2: Discussion of research methodologies Bertaux (1981) identified a decline in ethnographic and biographical research during the 1960s and '70s which broke the link between individual life-histories and macrostructures. As Skeggs (1997) argued, this was not reversed until researchers using Standpoint Theory provided a way to put research participants back into the heart of social research enquiry in the early 1990s. It is impossible to say whether research methods changed in this way because of the way that policy was being delivered at the time, or whether social science moved in this direction under its own accord. Nevertheless, it seems likely that the lack of studies using a life-history approach in this period contributed to the inability of researchers to properly consider the role of children within households containing a sick or disabled family member. 3.3.3: Transferability findings to this PhD As explained above, there appear to have been no findings about young or young adult carers published in this era. However, the two research studies mentioned directly above have theoretical relevance to this PhD. They are discussed in Chapter 4: The Literature on Adult Carers.

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3.4: Literature about young and young adult carers after the NHS and Community Care Act, and before the Carers' (Recognition and Services) Act (1990-1996) 3.4.1: Findings about young and young adult carers The first mention of the term 'child carer', a predecessor of the term 'young carer', occurred in a report of an experimental intervention carried out in the late 1980s, in which voluntary sector services for carers were funded via consortia in three local authority areas (DoH 1991). A survey in one of those areas, Sandwell, found that teachers were able to identify 95 secondary school children who had primary responsibility for a family member’s care, and 74 children who were secondary carers. This was out of 19000 secondary school aged children in the borough. Around half of those identified by teachers were under 14, and about a third were deemed to be under-achieving educationally. Teachers said that they lacked information about how to help these children.

Aldridge and Becker (1993) produced a ground-breaking study of 15 young carers aged under 18, and five former young carers, that popularised the term 'young carer'. This study provided a basis for policy development and service provision for this group. It marked the start of the Loughborough Young Carers Research Group, which went on to successfully lead the campaign for service provision and recognition in legislation for young carers (Alcock 2004). The authors confirmed in their literature review that, at the time the report was written, they could find no specific studies of young carers’ lives. They located only two examples of attempts to establish basic descriptive information about young carers. They also found one example of an attempt to include child carers alongside other carers, but without any attempt at a separate framework to deal with the very different circumstances arising from them being children. The authors also explained that children's caring roles had been described in medical studies of the impact of various parental conditions on children, alongside discussions of completely separate issues, such as the risk of genetic transmission of disabling conditions.

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Their sample ranged in age from three years to 18 years old, and the length of time in a caring role, for those who could remember when it started, from three to nine years. All were caring for parents and grandparents, rather than siblings. Five former young and young adult carers also participated in the study, including one who had been a full-time carer only for a short period at the age of 18 when her mother had had cancer. One pair of brothers were sharing the caring role for a mother and a father, both of whom were disabled. None of the young people felt they had had any choice about adopting a caring role, and some saw it as an extension of an already 'rough' life of benefits dependency and other problems (Aldridge & Becker 1993: p16). However, at the same time, the young and young adult carers who participated in the study all had strong feelings of love and commitment to their parents. The authors made a strong recommendation that children be rescued from their caring role, through whole family support.

What is needed is for this love and affection to be allowed to preside without the burdens and strains of caring … to provide for them so that they are not forced to be their parents' parents. (Aldridge & Becker 1993: p16).

Younger carers simply did what had to be done, no matter how distressing. However, older participants in the study did have some choice in the sense of being able to get nurses in to help with intimate care tasks. The authors also stated that the extent of the caring role depended directly on the level of disability, with the level of outside help available cited as a secondary factor (Aldridge & Becker 1993: p18). Light domestic duties were the most frequently carried out caring tasks, but the authors concluded that young and young adult carers performed such tasks much more frequently, and for longer durations, than did non-carer children. For example, one young woman found that being responsible for meals was particularly demanding on her time, because she had to think about and plan them. Another young woman had had to arrange for someone to come in and look after her mother, so that she could go out to college. She was burdened by guilt that her mother had otherwise had to be left alone, unable to move from the kitchen all day. When it came to personal care tasks, the level of intimacy was such that it was hard to distinguish time together 48

from time spent caring. Moreover, the emotional impact of seeing their parents incapacitated was often harder to bear than the physical reality of dealing with it (Aldridge & Becker 1993: p24). There were also instances of situations that were directly dangerous to health, for example where slightly-built children were lifting adults without having had lifting and handling training. Carrying out help with toileting and intimate washing was also often experienced by young and young adult carers as highly distressing.

Other family members used what the young and young adult carers perceived to be excuses for not helping. Sometimes, the carers made excuses for them. For example, girls often said that their older brothers’ failure to carry out caring tasks was due to boys being unable to cope emotionally with a caring role. Grandparents were also unlikely to help. Some young and young adult carers reported grandparents promising help with specific tasks that never materialised. Neighbours only helped if the young and young adult carers literally went and knocked on their door, but the authors attributed this reluctance to a wider lack of neighbourly contact in communities. The young people were cynical about formal support from social services and other agencies, whom they perceived to be setting up schemes to tick a box, rather than to actually help anyone. Because they were scared of being laughed at if they talked about their problems at school, most did not tell anybody about their circumstances. Schools themselves were generally unsupportive. For example, one school was reported to have expelled a child who had become violent due to sleep deprivation.

Aldridge and Becker`s (1994) follow-up study entitled 'My Child, My Carer: The Parents' Perspective', consisted of interviews with 10 disabled parents who were being cared for by the interviewees from the 'Children Who Care' project. This study was the Loughborough Group’s only attempt to match the views of their young and young adult carer respondents to those of their parents. Their original sample in the 'Children Who Care' study had been biased towards girls to reflect the greater number of girl carers in the population. The theme of why girls are more likely to take on a caring role runs throughout the analysis in the follow-up study. This was in 49

contrast to their later work, which was to use young carers’ projects as the contact point. The latter resulted in a gender split in the sample of 50:50, similar to that among young and young adult carers who attended the project (Dearden & Becker 2004). The 1994 study was based on in-depth interviews with eight mothers and two fathers being cared for by children. The researchers found that these families operated traditional gender divisions of labour. The women were responsible for keeping home. Even when they were physically unable to get around the house themselves, they were expected fulfil their role as housewife indirectly by instructing and managing the domestic labour of husbands and children. If the house was not kept clean and tidy, then the men would blame their wives for the mismanagement and potentially leave them. This finding may well be the source of practitioner assumptions about young and young adult carers' families having 'underclass' characteristics.

As in Ungerson’s classic study of adult carers (see next section), a particular son or daughter had often been chosen by the father to care for the mother. This was done through a deliberate placing of the child in a situation when they had ‘little option but to take on caring responsibility', or through ‘more subtle methods … such as bribery or cajolery’ (Aldridge & Becker 1994: p2). South Asian families found it unacceptable for sons to carry out a caring role to the point that one family was being shunned by other relatives because the sons were in this role.

In a few cases, the men had left the family home, and the disabled mothers claimed that this was because they had become too ill to be anything other than a burden to the man. Meanwhile, mothers appeared to be more willing to have their daughter take on a caring role than to risk losing a friendship by asking a friend to help. One mother said that she preferred to ‘rely on friends to be friends, not to be useful’ (mother cared for by daughter, cited by Aldridge & Becker 1994: p3). However, the mothers did recognise that their daughters needed formal support to come to terms with both disability and illness within the family, and their inevitable caring role. They also expected professional helpers to take their daughters’ specific needs into

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account. For example, they wanted home-helps to concentrate on tasks that their children found difficult, rather than on more manageable duties like shopping.

The fear of having children removed by social services caused mothers to seek approval from professionals for their children’s caring roles. However, the mothers had more protective attitudes than social services with respect to the extent that children could be held responsible for making decisions about what needed to be done. Mothers preferred children to carry out tasks under direct instruction. In contrast, many professionals assumed that the child could be held fully responsible for the house when they were home from school, at an earlier age than the parents would have considered acceptable. The mothers were nevertheless proud of how their daughters coped with responsibility, and associated it with the notion of a well brought-up, practically-minded girl. She’s sort of just been brought up with it and even my granddaughter watches me while my daughter puts cream on me ‘down there’ -- you’re there and it comes automatic. (Mother cared for by young daughter, cited by Aldridge & Becker 1994: p11).

One parent who had kept her daughter off school (Aldridge & Becker 1994: p13) reported that she had asked for, but been refused, a home tutor on the grounds that the daughter was well herself. To her surprise, her family were then threatened with court for her daughter's non-attendance, even though other families that she knew of kept their children off school for no discernible reason. The same parent also felt that it was acceptable that her two children should ‘alternate’ the caring role in order to have a social life. Quite a few of the mothers claimed to know that their daughter had a traditionally feminine personality type in terms of wants and needs. The mothers believed that the girls were therefore happy to have a caring role that often confined them to the home, as they would not have gone out much even if they could have. They suggested, for example, that the girls would prefer to invite their friends to the family home, rather than taking part in organised activity. However, the researchers felt that there was little relation between the parents’ perceptions and the actual 51

leisure preferences that the girls themselves had stated in a separate study of the same families (Aldridge & Becker 1993, cited above). The researchers stated that men who had left their disabled wives and their children were not asked for their side of the story. They also asserted that a highly traditional gender division of labour was insufficient to explain the level of apparent callousness of these men towards their wives and daughters. They suggested, instead, that the fathers' decisions to leave may have been due to the individualistic attitude common in late-modern society, whereby those who can get out of non-reciprocal relationships tend to do so (Aldridge & Becker 1994: p2). Aldridge and Becker said nothing about why the two cared-for fathers had not had their wives leave them.

Towards the end of the post-National Health Service and Community Care Act, preCarers’ Act era, Fox (1995) carried out the last piece of primary research which referred to the young carer phenomenon as part of a wider issue of children missing school for various illegitimate reasons, including truancy, work in a family business or home responsibility. Fox (1995) carried out an interview-based study to explore the differences between different group of children's professionals (therapists, educational welfare officers and teachers) on how they viewed children missing school because of home responsibilities. He found that young people staying off school to open the door to an official, or to care for younger siblings, were being classified by professionals under similar models of absence applied to those staying off school to care for sick or disabled family members. It should be noted that the terms ‘young carer’ and ‘child carer’ had not yet been popularised, and it appears that Fox was not aware of them. He was writing in the education field, and the terms were at that time, the early 1990s, exclusively used in health and social care.

Broadly speaking, school absence on account of home responsibility was explained in one of three ways: child orientation towards practical roles; parental instigation; and overriding child concern for their family's well-being. Fox suggested that the term 'children with home responsibilities' (CHRs) captured this range of activities better than any other, while excluding other reasons for absence from school such as working in a family business. He acknowledged that such children might have had 52

some decision-making power in the home. In contrast, other terms used commonly at the time, such as ‘parent-led absence’, wrongly assumed that the child had no power to decide about taking on a caring role.

Fox found that child therapists, educational welfare officers and teachers explained school absence among CHRs in a variety of ways. All groups of practitioners agreed that caring roles could be practical, and/or concerned with providing emotional support to a distressed parent. Moreover, they believed that schools needed to be flexible about issues such as CHRs coming to school late. Teachers tended to believe that parents were making the child stay off school to keep them company, in which case the parent would need to be educated about its importance. Therapists mostly took the view that the child needed to be with a parent whom they were afraid of losing, in which case the child’s rather than the parent’s psychological issues needed to be resolved in order to address absenteeism.

Respondents did generally agree about the greater prevalence of girls amongst CHRs, and that girls were much more likely to miss school due to home responsibilities than boys, except where fathers were absent, and boys were assuming a 'boss of the family' role (Fox 1995: p226). Asian families were reported by professionals who participated in Fox's (1995) study to be particularly inflexible with regards to the father’s and mother's domestic role. If there was a gap in covering domestic tasks in Asian families, the work would almost invariably fall to daughters.

However, different groups of professionals disagreed about the extent to which children’s preferences were a factor in relation to school attendance. Educational welfare officers were more likely to emphasise socioeconomic circumstances which meant that parents had to choose their own jobs over their children's education. For them, the children’s preferences were, therefore, irrelevant. Teachers emphasised cultural factors which they believed led working-class parents give education a low priority, and transmit those prejudices to their children. For the teachers, the solution lay in educating parents about the reality of school life, for example about the impact of missing school on peer relationships. Both therapists and educational welfare 53

officers felt that school was often unattractive to non-academic children, to the point that taking on home responsibilities gave them enhanced self-esteem. The latter view implies that the child, not the parent, was leading the choice to stay off school.

Even if a therapist believed that a child was leading the decision to miss school, they still thought that parental low self-esteem might nevertheless play a role. According to them, parents would cooperate with the child’s wish to stay off school out of fear that their child had become unable to cope with attending, especially if they had had bad experiences of school themselves. The therapists’ solution was to work on the relationship between parent and child to try and reinforce the parents’ role as an authority figure (Fox 1995). In relation to the present thesis, it could be argued that these respondents felt that there needed to be a deliberate undermining of mutual relationships between parent and child in order to stop families openly sharing negative feelings about school. Nevertheless, they did understood that children can have power within their families, and that mutual relationships can exist between different generations, albeit with results which they considered to be damaging. In contrast, Aldridge and Becker assumed that parents have all the power. The feminist disability activist, Jenny Morris, responded to the Loughborough Group’s research in 1996 with the first critique of the idea that young and young adult carers have taken on definite and difficult-to-reverse caring roles. She suggested that policy-makers should focus on the aspects of housing provision, schooling, social services and community attitudes that prevent disabled women from acting as ‘normal’ wives and mothers, and which, therefore, create the need for young people to act as carers.

One child interviewed by Aldridge and Becker talked of how she had to stay off school in order to help her mother up and down stairs to the toilet. Her mother reported how she had applied to the council to be rehoused in a bungalow so that she wouldn’t have to keep her daughter off school … Women who have grown up with [disabilities] often find that they don’t have the opportunity to develop caring skills … [One father whose wife was now in 54

a wheelchair] said he had lost his wife, he hadn’t got a wife who could stand beside him in the pub. (Morris 1996: p108).

For the first time, Morris raised the issue of how young and young adult carers’ problems can be alleviated, and past harms undone, by better supporting disabled parents. Rather than reinforcing parental authority, as Fox’s (1995) professional respondents recommended, Morris (1996) argued that attitudes towards disability in society at large should be challenged. Morris attempted to address the problems that create the need for young and young adult carers at source, and assumed that ‘normal’ relationships between disabled parent and child would follow naturally from better provision for disabled people.

3.4.2: Discussion of research methodologies The Sandwell study (DoH 1991) was the first to mention child carers as a category. It covered the same historical period as Frank et al.’s (1999) study, in which former young and young adult carers were talking retrospectively about the 1980s. However, the report produced a lower figure, about a third, for the proportion of young carers being affected educationally by their role. As the authors themselves stated, the phenomenon of children caring was considered an extremely sensitive issue then, due to the 'very real danger of breaking up the family' (DoH 1991: p11). It The most severely affected young people may have managed to hide their caring from their teachers.

Aldridge and Becker (1993), who led the first of the Loughborough studies, and the first piece of research about young and young adult carers to significantly influence policy, used a tried and tested questionnaire to measure the amount of caring that young and young adult carers engage in, enhancing the reliability of the research. They also seemed to have a good range of young and young adult carers in their sample. For example, they included children who, in late childhood, and with no prior caring experience, suddenly found themselves looking after short-term cancer sufferers, and those who had had long-term roles starting in early childhood. 55

Nevertheless, the report failed to criticise the negative view of disability found in the medical literature, as Olsen and Clarke (2003) pointed out.

More was implied about the data than was supported in the report. For example, Aldridge and Becker stated that one pair of parents were supportive of their children, and tried to limit the amount of care being carried out, thereby implying that other parents did not do this. However, they did not investigate systematically how much other parents were doing to limit the young or young adult carer’s role. This should have been an easy question to ask, given that the authors found that disabled mothers were still in charge of the house. Above all, they did not provide a framework to justify the concepts of ‘role reversal’ and being ‘forced to be their parents' parents’ (Aldridge & Becker 1993: p24). That the research was intended to be descriptive does not justify such a specific use of terms like ‘role reversal’ which require theoretical definition. Olsen and Clarke (2003) have provided an in-depth critique of this report, and the work which followed from it. Olsen and Clarke’s own study, for which both disabled parents and their children are interviewed (see next section), suggested that disabled parents remain very much in the role of struggling to protect, rather than be protected by, their children.

Aldridge and Becker stated that older children have some choice, whilst younger children do not. This statement could be misleading unless it is recognised that older young and young adult carers do far more than younger ones (Dearden & Becker 2004), and are therefore less likely to have taken on such roles without an element of choice. The 16-18 year olds who undertake caring activities for more than 50 hours a week have, by doing so, knowingly turned their backs on-full time education, training and employment. It is almost certainly harder to compel someone to take on a 50+ hour a week role, than it is to require a school-attending child to carry out caring tasks on evenings and weekends. Some under-16s do illegally drop out of school altogether to care, but most of Aldridge and Becker’s (1994, 1993) research participants were not in this category. The researchers were not comparing like with like. If they had tried to seek out and compare younger and older children doing similar amounts of care, then they would have been mostly looking at older children 56

caring alongside activities such as work, training and education (Dearden & Becker 2004; Olsen & Clarke 2003). These older children might have been equally or more likely to have been compelled to do caring work, in contrast to their peers who were in full-time caring roles.

There is a need to better understand young and young adult carers’ relationships with the older generation, rather than dismissing them as being based on ‘choice’, and therefore less concerning that those of younger carers. It may be more common for disabled parents to compel their 16 year old young carers to home at age 16 than for the 16 year olds to make such decisions themselves (personal communication from young carers’ worker 2009). This worker reported to me that she had carried out unpublished research for the Department of Health on the reportedly widespread issue of former young and young adult carers being made homeless. The commonness of this phenomenon suggests that catastrophic conflicts over the extent and nature of the caring role may be prevented while the child is attending compulsory education. Otherwise, more young carers would end up being voluntarily placed in the care of the local authority.

Aldridge and Becker's follow-up study on the views of disabled parents was small, with a sample of only eight parents. Retrospective and current accounts of children caring were insufficiently distinguished. For example, parents of young and young adult carers may justify themselves differently in retrospect by stating that their child had a feminine personality, but may have fought for their child at the time. The authors could also be accused of sexism, as they tried to provide rational explanations for the fathers' callousness in leaving their wives and children when the former got ill. At the same time, they left the reader to assume that single disabled mothers are irrational and emotional in their belief that their girls did not mind staying in and helping. Just because the mothers’ accounts did not tally with those of the girls, it does not follow that the mothers lacked rational reasons for believing that the girls preferred a caring role to a social life. They might simply have misread the signs. For example, they might have seen their children struggling to socialise at school, and judged that they would be happier staying at home. 57

Becker (2005) himself acknowledged the need for some more analytical perspectives in his own review of the young and young adult carers’ literature. He drew out two points which are not made clearly enough in the reports of individual studies: first, that there are some positives to being a young or young adult carer; and, secondly, that young people generally ‘drift’ into caring roles, rather than being deliberately cast in them by their parents. For the purpose of this thesis, I use the term ‘drift’ in inverted commas to describe the absence of either compulsion or an irreducible sense of duty. It is not a perfect description of the phenomenon, as socalled ‘drift’ can actually occur in a series of incremental steps, where each was consciously taken, but the next was not anticipated.

Fox's study of professionals involved in dealing with school absence is one of the most analytical studies in the entire literature concerning young and young adult carers. As with the Sandwell report (DoH 1991), Fox relied on second-hand information from professionals who may well have underestimated the challenges arising from the most sensitive caring roles, which are also those that which most seriously impact on the lives of young and young adult carers. However, Fox did talk to groups of professionals who specifically dealt with the key issue of children staying off school. Moreover, he is the only writer since Young and Willmott (1962) to have considered young and young adult carers in the broader context of family structures that place greater than average responsibility on children.

3.4.3: Transferability of findings to this PhD The most relevant finding of the Sandwell study (DoH 1991) is that many teachers stated that they lacked knowledge about how to help young carers. This is an issue that young carers’ project teams continue to work on to this day in their individual partnerships with Local Education Authorities and schools. Further and Higher Education providers may be in the same position now that teachers were then, since young carers’ projects have only recently begun to work with these providers. From Aldridge and Becker’s (1993) study, important and relevant themes can be derived: ever-increasing isolation of young and young adult carers; dangerous situations; carers making excuses for family members who fail to provide support despite being 58

available and able; and indirect discrimination from schools. The frequent making of implausible excuses for those who fail to help out is particularly relevant because it suggests that carers might believe family relationships to be more mutual than they actually are. Unlike the other reported findings, the above need not be called into question due to lack of critical analysis, because the researchers’ framing of them fits with their respondents’ own frames of reference. The concept of role reversal, in contrast, is in direct conflict with parental descriptions of how they tried to avoid young and young adult carers taking on lead responsibilities.

Viewed as a form of triangulation to the 'Children Who Care' study, Aldridge and Becker's (1994) follow-up study on disabled parents works well. The contrast between the views of disabled parents in the latter, and their children in the former, is striking. New questions relating to parental attitude towards the child's caring are raised. For example, are parents blinded to their children's unhappiness with their caring roles by an overwhelming fear of becoming dependent on inappropriate professional care? The study also brought up the issue of fathers leaving because their disabled wives could no longer reciprocate in their relationship, a finding which reflects a wider societal view of disabled people as receivers but not givers of care.

Fox's (1995) most significant finding was about a lack of shared concepts through which professionals could build up a knowledge base to guide help for young and young adult carers. In consequence, he was able to uncover some significant themes that are ignored in other carers' literature. At the same time, he used the contrast between different professionals to show that the questions raised had been far from answered. One important issue was the extent to which ill or disabled parents and their children might or might not value school above and beyond the needs of the family, particularly the need to spend time together when parents might not have much longer to live. A second issue was the extent to which dissatisfaction with school might or might not act as a pull factor for children with home responsibilities to stay at home even more than the parents considered necessary. Identification of these issues raises the question of whom professionals should be working with to ensure that children with ill or disabled parents do attend school. In 59

relation to contemporary concern about young and young adult carers, a similar question can be asked about who should best help them to attend college, work or training. Underlying these questions is the issue of the extent to which parents and their children may mutually share negative feelings towards school, leading to pupils staying off more than is necessary to meet needs, as against such parents simply projecting their wants, needs and fears onto the child? Could children who do not fit into the school environment (Closs et al. 2001) be learning to exercise their own power in staying at home with their disabled parent, and could this bode well for their future independence? Fox (1995) was also the first and last writer to raise the issue of whether boys typically have a different but equal role to girls, particularly where fathers are absent.

Finally, Keith and Morris’ (1996) analysis remains to this day the only work to focus on the broader issues facing disabled women, in terms of them being excluded from girlhood training for their future family roles as wives and then mothers on account of lifelong disability. Alternatively, this analysis suggests, they might be cast out by their husbands and society as no longer able to perform domestic roles on account of disabilities acquired later in life. Their analysis emphasised that disabled parents can be givers as well as receivers of care. It also suggested that some relatively simple steps could enable such parents to give more to their children, while reducing the caring roles of those children. An interesting question arising from the work of Fox and Morris is why their contextualising perspectives were not maintained by later writers about young and young adult carers. Instead, as the next section will show, this research has subsequently become more descriptive, and less analytical.

3.5: Literature about young and young adult carers in the era from the Carers (Recognition and Services) Act (CA) to the present 3.5.1: Findings about young and young adult carers in the post CA era In the year that the National Strategy for Carers was launched, Frank et al. (1999) published a report derived from in-depth case study interviews with 25 former young and young adult carers aged 25 and older, the oldest of whom was over 65. Most 60

respondents stated that being a young or young adult carer had impacted negatively on their health and education. They also identified harmful impacts on their immediate career choice, and ability to relate to peers. The respondents regretted that they had missed out on normal childhood experiences such as having strong parental role models. This loss, they felt, was partly due to the fact that school staff did not or would not intervene. Where social services were providing support, this was often done in an insensitive way which destroyed the feeling of the family home bing a safe, durable place. Some young and young adult carers had also gone through the distressing experience of members of the family denying the reality of their role, for example when non-caring siblings refused to recognise personal faults of the cared-for person that made them particularly difficult to care for (Frank et al. 1999).

However, having been a young or young adult carer seemed to have had some positive impacts on many in the longer term. For instance, they were willing to fight to achieve a good education for themselves, despite their often unpleasant experiences of school. They were proud of their ability to empathise with others, willing to use this quality in their choice of later-life careers, and clear in their political views about necessary changes to the circumstances of young and young adult carers.

This study suggested that, in the longer term, the positive impacts on careers were more pronounced than any harmful consequences in the shorter term. However, there were exceptions, in cases where circumstances continued to get worse throughout the former young/young adult carers' life. This tended to be more likely to happen where the cared-for person had also been an extremely controlling parent. Such parents tended to restrict the child’s socializing as a way of retaining them in case they were needed at home.

Her father refused to let her take on ‘Saturday work’, social contacts with her peers were extremely limited and she was consistently denied the opportunity of joining after-school clubs or other youth organisations: ‘All this left me 61

feeling introverted, sometimes depressed and definitely lacking in confidence … I still have difficulties when it comes to making new social contacts … for years I avoided social situations, or else my dad would refuse me [permission to go out]’ … She left school with no formal qualifications. In part this was due to her poor attendance record, in part it was the result of her view that she was unlikely to be ‘allowed’ to work and that caring for her father would take precedence. (Frank et al. 1999: p22).

In a large minority of the cases, where there had been manipulation, the respondents were still suffering the effects of having been a young /young adult carer. They either drifted from one subordinate family role to another, or perceived themselves as having chosen to avoid close interpersonal relationships since the cared-for person had died.

The above analysis is based on the assumption that it is the caring role itself that makes the young person vulnerable to other problems. However, the father discussed in the above quotation could have found other excuses to abusively control his daughter. It was in this vein that, in 2002, cracks began to appear in the largely qualitative body of evidence about young and young adult carers. A Barnados researcher became particularly concerned with the prevailing assumption that young carers’ project users were the 'tip of the iceberg' of a larger, hidden and perhaps even more desperate group in society (Newman 2002). Instead of categorising all children 'affected by disability' under the label 'young carers', as some young carers’ projects do, Newman wanted the taking-on of a caring role to be viewed as just one example of the effects of disabled parents' poverty and social exclusion on children.

He argued that when the overall correlation between parental disability and childhood issues is taken into account, the effects of children taking on a caring role could be seen as a net positive, due to the life skills learned, and the likelihood that such life skills would help them to survive the same adverse circumstances that created the need for caring. The hidden iceberg of extreme need was more likely to 62

consist of children who had disabled parents, but were not young carers. These noncarer children might well be more vulnerable than young carers to the effects of childhood deprivation, because they were less mature, or did not have the capability to act as carers.

In the following year, Thomas et al. (2003) published a participatory research study on young and young adult carers contacted through young carers’ projects and health centres. The study found that the majority of young and young adult carers had no wish to be ‘rescued’ from their caring role. Instead, they would have liked better support to cope as young people in unusual and potentially isolating situations, and also some carer support. The positive effects of caring discussed in Thomas et al.'s study included being better prepared to go away from home to university, having ‘something to do’ through the day, and becoming closer as a family (Thomas et al. 2003: p9).

Olsen and Clarke (2003) undertook an interview study of 67 disabled parents (57 mothers and 10 fathers) on the dual themes of how they parented their children, and how personal care and household tasks were carried out in their house. The research had the explicit aim of questioning the view that any child affected by disability should be referred to a young carers’ project for support. The researchers argued, instead, that at least some young carer project resources should be given directly to disabled parents to purchase necessary support, so that their children need not be in that role. They acknowledged that the Loughborough Group had moved towards advocating whole family support for young and young adult carers since their original 1993/1994 studies, but they still felt that the overall approach was one of pathologising disabled parents. They wanted the needs of disabled parents and their children to be considered through the social model of disability, so that their children's experiences of deprivation could be framed in terms of lack of material resources, rather than deficiencies in parenting. Olsen and Clarke also argued that disabled parents were being pathologised because they were more likely than nondisabled parents to be under-resourced single mothers.

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Despite the overall focus on parenting, rather than children's roles, the researchers gave a questionnaire to both children and parents for the purpose of triangulating parent and child views of the level of domestic work being undertaken. Most children in the sample reported low involvement in tasks other than shopping or washing-up. Olsen and Clarke concluded that most children’s level of involvement in such tasks was within the bounds of what psychologists consider normal for children of that age. However, a small number (8 out of the 66 who were asked) reported strikingly high levels of involvement. At the same time, many disabled parents reported being unable to look after themselves or their spouse properly, or leaving housework undone altogether, in order to avoid their children taking on caring roles. This finding supports Newman’s (2002) conclusion that, due to the many unmet needs in families affected by disability, children living in such households suffer from the effects of living in a severely under-resourced home, regardless of whether or not they take on caring roles.

All of the disabled parents raised the issue of how difficult it was to access activities with their children. Due to their children missing out in this way, some disabled parents felt that their children needed young carers’ projects, even though they were not actually carrying out any personal care tasks, or undertaking above-normal levels of domestic labour. The plight of disabled single mothers was particularly highlighted. Their struggles to provide a normal family life were pinpointed as both the cause of children taking on caring responsibilities, and of those children needing the support of specialists to deal with the stress of living in a struggling family.

The researchers found that there was little correlation between being named a ‘young carer’ and the actual amount of care carried out by a child. This lack of correlation was due to older children being more likely to have caring roles, while not being deemed in need of support. Younger children were more likely not to have a caring role, and to be deemed in need of support. Parents reported that younger children would sometimes lend a hand with households tasks in a non-useful way, due to their wanting to be involved in what their parents were doing. The parents attributed this tendency to their own inability to get themselves and the house ready 64

before the children came home, so that they could spend the time with the children. As a result, there was nowhere for the children to be, other than watching and joining in with housework and care tasks (Olsen & Clarke 2003: p71).

At about the same time, Eley (2004) carried out a survey of school children to identify hidden young carers, and get their view on their own support needs. The main finding was that secondary school children of all ages felt that it was too late to come forward for support, as they did not want anyone to know their circumstances. However, they felt that they would have come forward in primary school, had they been given the opportunity. One reason for this difference may be that UK secondary schools are larger and less intimate than primary schools. Becker (2005), a member of the Loughborough Group, reviewed existing UK and Australian literature on young and young adult carers. He concluded that there were both positives and negatives to the caring role; that young people generally drift into a caring role; and that there was a gap in the literature that could only be filled by studies with more critical perspectives. The above studies raised interesting questions about the meaning of being a young or young adult carer, which were not addressed in the later largely descriptive studies. Some of these later studies used innovative methods, for example photographs of the care environment (Crogham et al. 2008), to give voice to the youngest and least articulate carers. However, they did not do so in a way that allowed contextualisation of research participants’ experiences (Aldridge 2014).

Tarapdar (2007) carried out the most in-depth interviews to date, with just five young and young adult carers aged 13-18, focussing mainly on the subjective experiences of caring. The study used peer-to-peer interviewing. This approach was adopted on the grounds that previous researchers had projected adult terminology onto young interviewees who lacked the confidence to challenge older interviewers. The young and young adult carer respondents reported being the sole decision-maker whenever a crisis hit the household. They found themselves ill-equipped to meet such crises as they had no means of accessing money in their own right, and were sometimes even left without food. They considered their caring role to be timelimited, often by the cared-for person having a life-limiting condition. The 65

interviewees felt disloyal if they contemplated moving away, or restructuring their lives in ways that did not include the cared-for person. They also felt that they were being disloyal to themselves as sufferers from a situation that should not occur if they started looking at the ‘good’ side to being a carer. One respondent challenged the idea that he was a ‘carer’ just because he was carrying out ‘adult’ tasks, which he believed a person of his age should not be undertaking.

The theme of service resistance is raised for the first time in Tarapdar’s study. Young and young adult carers considered that, having coped on their own for so long, it would be undermining for someone else to come in, even though additional support was very much needed. They felt completely alone and misunderstood. One girl found herself unable even to correct other people’s assumptions that the reason she and her mother were going to the doctor all the time was because she, rather than her mother, was ill. The young and young adult carers believed that services were based on snap-shot categories of need. They noted that young people’s needs fluctuate, depending on factors such as the point in their education they are at, whether there were household cash-flow problems, and the progression of deteriorating conditions.

O’Dell et al. (2010) formulated the first fully youth-centric theory about the reasons for negative constructions of young and young adult carers. Like Fox (1995), O’Dell et al. considered their role in the context of young people with various forms of ‘adult’ responsibility. However, unlike Fox, they actually spoke to the young people concerned. Their sample included 46 pupils and further education students aged 1519, who were either young or young adult carers, language-brokers for parents who did not speak English, or young part-time workers. The young people were given fictional vignettes describing the responsibilities of a ‘typical’ young carer, a ‘typical’ young language-broker and a ‘typical’ young part time worker. They were asked how the characters would feel, and how they would be viewed by those around them. The young carer vignette gave the girl’s age (14), her older brother’s age (15), what her disabled father needed help with, and stated that the girl sometimes missed school

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to care for her him, and ‘wishes she could see her friends after school like her brother does’ (O’Dell et al. 2010: p647).

The researchers found that even young and young adult carers judged the young carer character to be abnormal, and to be struggling primarily because she was different to other young people.

What we as a society call normal … somebody who has a mum and dad, who have full functioning bodies, who speak English, who have decent jobs, maybe a couple of brothers and sisters. (O’Dell et al. 2010: p647).

Although the quotation refers specifically to society’s view of normality, the respondent quoted above was not critiquing such a view. She was stating that it was hard to be different, while also agreeing with the societal view that it would better to be ‘normal’. Respondents took this view because they regarded the teenage years not so much as a time for study, but as a time for ‘limited responsibility … play and socialising’ (O’Dell et al. 2010: p648). In consequence, the often mentioned benefits of being a young or young adult carer, such as knowing how to care for people, and being more likely than the average person to value one’s education (Frank et al. 1999), may be written-off by young people themselves as irrelevant to the question of whether one’s youth is being spoilt. Youth is not necessarily regarded by young people as a time for preparing for the future.

However much adults construct a reality in which a young person’s main ‘job’ is to prepare for the future, young people may well regard youth as a time for hedonism. This view is, perhaps, a response to the contradiction between the media bombarding children with ideas about ‘wants’, and an official society obsessed with their needs (Simon and Ward 2010). One young language-broker even described the young carer character as not having a ‘real life’, and another suggested that this 67

person had experienced an almost complete loss of childhood. One respondent in the young carer/young adult carer group believed that missing school would have a long-term impact on friendship networks, because it would inhibit the development of potentially life-long friendships. Another young carer explained how, even when at school, she missed out on normal conversations about home life, because she knew too much about adult responsibilities to engage in her friends’ criticisms of parents for being too restrictive. In an interesting echo of Pember Reeves’ Edwardian study (2008/1913), one of the young part-time workers was concerned that the young carer character might have to get a job instead of studying, in order to financially support the household.

Most importantly, both the disabled parent and the young carer character were seen as passive victims in a highly adverse situation. There was no notion that either might have strategies for change, or even that any type of change in society could make it easier for the family. In contrast, respondents who were themselves young or young adult carers suggested what they found hardest was seeing their parents upset that their children were undertaking tasks that ‘should’ have been the responsibility of themselves as adults. However, on being asked about the impact on her education, one respondent from the young /young adult carer group suggested that the challenge was to avoid:

going through life thinking ‘oh yes, this is difficult, I’ve got to run away, I’ll hide behind my mum’s disability’. (O’Dell 2010: p651).

Such comments suggest that the professional respondents interviewed by Fox (1995) might have been right to believe that some young and young adult carers do have personal as well as altruistic reasons for choosing to stay away from school in order to carry out caring tasks. However, these respondents were discussing personal reasons that were completely negative. In contrast, the respondents in O’Dell’s (2010) study who saw a positive side to caring were the young language68

brokers, not the young and young adult carers themselves. The language-brokers suggested that the communication skills involved with caring are transferable. The reason that the language-brokers saw young carers as having no life was not on account of the caring role itself, but because they did not see carers as part of a community. The language-brokers themselves had a group of friends who were also foreign language speakers, and who all had to translate for someone else from time to time. O’Dell et al. (2010) argued that this blindness by the young languagebrokers to the shared aspects of caring families and communities echoes the individualised view of care and disability that dominate in the wider society. This societal perspective ignores the possibility that ‘caring is part of the collective activity that takes place within families’ (O’Dell et al. 2010: p653).

3.5.2: Discussion of methodologies Frank et al.'s (1999) sample consisted of people contacted through disability groups. The study was therefore biased towards those who still have a caring role, albeit for somebody different to the person they cared for as a child. The authors gave a good level of detail in their methodology section, with a lot of attention paid to the issue of how the researchers tried to maintain sensitivity. They did so by briefing respondents fully, and using interviewers with experience of working with young and young adult carers, in order to get honest accounts from respondents. The interviewer’s prior experience of interviewing young carers was an asset, and it increases the trustworthiness of the study that the researchers gave such details in their methodology. On the other hand, the methodology section of the report lacks selfcritical reflection. The researchers seemed over-confident on the basis of having had research experience with present young and young adult carers, and did not fully discuss the possibility that this older generation might have had completely different experiences to the current one. Similarly, the respondents no longer being children might have led to them feeling more confident about expressing their views honestly. However, it might also have resulted in distortions arising from retrospection after a lapse of time. For example, it may be that as young and young adult carers get older, they come to see their upbringings as more and more abnormal in comparison to those of others. 69

Thomas et al. (2003) obtained s mostly similar findings to Frank et al. (1999). However, their respondents put more emphasis on the failings of schools and social services, and less on the inappropriateness of the role itself. This difference may reflect generational differences. Frank et al.’s respondents were young in the 1980s, and Thomas et al.’s in the ‘noughties. As Simon and Ward (2010) suggested (see Chapter 2: Context), there have been changes in attitudes towards parenting since the beginning of the New Labour era in 1997. Thomas et al. (2003) also had a more qualitative ethos than Frank et al. (1999). They were able to allow young and young adult carers to speak in their own language due to their participatory methodology. This approach allowed respondents to build up their own frames of reference using simple visual tools. Despite being more analytical in aims and approach than is evident in other studies, Thomas et al. did not give much consideration to social structure. Nevertheless, the research highlighted how service-user voices were being silenced by professional ones.

Olsen and Clark (2003) made good use of triangulation of qualitative narratives against quantitative measures, and also compared parents' perceptions against those of children. The aim of the study was to understand whether, and how, disabled parents try to normalise their children's childhoods. However, in other ways their work had an overly narrow focus. In particular, some of their criticisms of young carers’ projects were unwarranted. For example, they suggested that projects should be evaluated on the basis of comparisons between children who use them and similar children who do not. However, as well as working directly with young carers, young carers’ projects aim to build awareness of young carers' needs more generally in schools and other mainstream services, and to facilitate the development of structures designed to meet those needs. Another area that needed further analysis in order to fully meet the aims of the study concerned the overall role of older children within families, particularly the extent to which parents reported making the same efforts to limit the role of older children that they did for younger ones. They might also have considered whether older children help at home out of boredom, but at a more useful level than their younger, less accomplished siblings.

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Tarapdar (2007) used an innovative method which seemed to elicit young people’s own terms of reference. He can be criticised for accepting terms uncritically for the purpose of classification. For example, one young person was described as having been a carer for 15 years despite being aged only 18. However, the question of whether this respondent had been carrying out caring or secondary caring tasks since the age of three was not addressed. Possibly, the author may have meant that the family member had been disabled for 15 years, but this is quite different to having a caring role. The contentious concept of ‘role reversal’ was also used several times in the report, even though respondents did not attribute their feeling old for their age, or different to their peers, to this process.

O’Dell et al.’s (2010) method was even more innovative. They offered an in-depth description of the methodology which increases the trustworthiness of the paper. For example, the process of, and outcomes from, piloting the vignettes was described in detail. The authors believed that using characters younger than the respondents themselves would help them to identify with them retrospectively. They stated that this expectation had been confirmed in piloting. However, this method may have unintentionally excluded young and young adult carers who had only recently taken on a caring role, given that most of the respondents were aged over 16, and were being asked about their own lives. More importantly, there was a lack of class or gender analysis in the discussion part of the paper, even though reference was made to the need for practitioners to consider financial aspects of the family’s situation. There was also a lack of information about whether the young carer respondents were aware of young carers’ projects. There was no discussion about whether participation in such projects might have helped young carers to feel, like the language-brokers, that they belonged to a community.

3.5.3: Transferability to this PhD Frank et al.'s (1999) study provided a methodologically robust account of trajectories that former young and young adult carers might take, including to becoming a young adult carer. All of their findings are therefore directly relevant to young adult carers 71

who also had a caring role as a child. In some cases, respondents who had participated in their study had experienced independence for a brief period only to be drawn back into caring. All seemed to have had a continuing vulnerability, due partly to the emotional impact of past events, but also to substantial narrowing of options following educational disruption. Through knowing less people, and struggling in education, they had had more limited choices about entering the labour market, and selecting a partner. All of these themes are relevant to any study of young and young adult carers, and particularly to one, such as my own, that is concerned with caring roles in the context of overall relationships between generations. The most relevant finding from this study was that respondents felt that they had missed out on strong parental role models. This finding suggests that, retrospectively at least, former young and young adult carers may not see disabled parents as givers, as well as receivers, of care.

Newman’s (2002) review stands alongside Fox’s (1995) earlier study as prime examples of documenting how children who would otherwise be powerless to change their day-to-day living situations take on a caring role in order to support their parent. The child receives a better functioning household as a result. Therefore, a child’s level of choice and power can be enhanced by the caring role in the shortterm, but may be undermined by it in the longer term. Ironically, the provision of carer’s allowances for carers over 16 may reduce the amount of care which young and young adult carers need to carry out, by relieving the financial pressure on the household. For example, there may be less need to shop in the cheapest and least convenient shops. A consequent question for this thesis in relation to family household income is whether the jobs, student funding and/or benefits available to young and young adult carers in households affected by disability reduce their dependency on the older generations to the extent that they are able to form mutual relationships with, or purely charitable relationship towards, cared-for people and cocarers.

Eley's (2004) finding about secondary school age children feeling that it was already too late for them to be helped has implications for older young people who may be 72

even more sensitive to intervention than their 11-16 year old counterparts. Finally, Olsen and Clarke's (2003) study is useful for filling the gap left by research on young carers’ project users, but the sample was biased away from the most hard-to-reach, and towards the most motivated and articulate parents. There was also a failure in Olsen and Clarke’s work to look at the issue of being a young or young adult carer in terms of social roles in our society. They argued that children may become carers not so much because their help is needed, but because they want to be in the caring environment in order to spend time with their parents, as also suggested by Fox (1995).

Fox raised questions about whether sick and disabled parents need professionals to help them find extra time to spend talking with their children. This additional time might enable the whole family to deal with emotional and practical issues that are absent in families not affected by sickness or disability. Ironically, however, spending of such time could be seen as part of the caring role, because it is one way in which children are affected by ‘caring about’ family disability. Many young carers’ projects define their remit as being to help children who care for, or about, a disabled family member (Olsen & Clarke 2003). However, the professionals who participated in Fox’s (1995) study saw such time as a means of children with home responsibilities from missing school. They were able to see this because they focussed on actually occurring adverse outcome, rather than measuring the extent of roles in terms of hours spent caring.

Tarapdar’s (2007) study is relevant to the present PhD mainly in relation to the most extreme cases of family deprivation and carer isolation. Evidence suggests that, in most cases, professionals and extended family members at least know about the young person’s caring role, even if they do not always act appropriately. In consequence, most young and young adult carers are not so much isolated as poorly supported (Becker 2005; Frank et al. 1999; Aldridge & Becker 1993). The one finding of Tarapdar’s that may have implications for all young and young adult carers is the suggestion that many may see themselves as:no more than ordinary young people being made to undertake activities that they are not equipped for. Participants 73

in other studies may have accepted the label of young carer because an authoritative adult had imposed it on them. This finding raises the question of what it would take for a young person to feel themselves to be a carer. For example, young adult carers may fare better than carers aged under 18 simply because they can access certain amounts of money, however meagre, in their own right. They can then themselves choose to put money towards the household in times of crisis, and are therefore, to some extent, financially ‘equipped’.

There is an interesting contrast to be made with the Edwardian disabled parent (Reeves 2008/1913). She had the power over her daughter to decide whether the girl stayed at home to help, or went out and earned money, given that this money was to be fed automatically into the household income. One wonders how many young people had their Educational Maintenance Allowance taken automatically by the family. It can also be asked how many were put in a perhaps worse position where they felt themselves forced to ‘choose’ to spend this money on supporting their family, only to be criticised by a lecturer for failing to have used it to acquire basic equipment for college. Life without the now abolished Educational Maintenance Allowance will be worse for young carers aged 18 and under, not just because they cannot afford the expenses of going to college, but also because they will lose the option of juggling around those expenses in order to buy food and other essentials.

In the families studied by Tarapdar (2007), there appeared to be no siblings to choose between on the basis of gender. In consequence, the taking-up of new opportunities in the transition to adulthood was delayed until the caring role could be ‘escaped’ altogether. This situation is quite different to the long-term, day-to-day, whole family struggles described in the other studies outlined above. These studies showed that the carer’s need for a life of their own alongside the caring role was at least being considered.

O’Dell et al.’s (2010) research stands out from the other studies discussed above, 74

and to my own research, because it was concerned with conceptualisations of young people with adult responsibilities, rather than with what young and young adult carers and their families actually do. Hence, their researchers did not ask what young and young adult carers’ social networks were like, just whether a fictional case was considered to imply good or bad social networks. However, O’Dell et al.’s (2010) research does confirm the suggestion made in Chapter 2: Context, namely that, in the eyes of policy-makers and the public, the issue is no longer whether disadvantaged youths engage with education. The main concern is now how well and how ‘normally’, they do so, given their extra-curricular roles. O’Dell et al.’s findings should also sound an additional note of caution for anyone carrying out research based on the assumption that carers’ negative feelings about their family situations can be attributed directly and solely to the caring role.

3.6: Review of research literature in the era of austerity, 2011-2015 This section explores shifts in UK and Australian research, the main countries in which it has been undertaken, since 2010, when the funding ring-fence for young carers’ projects was removed in the UK. Some of the fieldwork pre-dates the removal of the ring-fence, but may have been influenced by this policy shift. Researchers in other countries such as the USA have also very recently begun to pay attention to young and young adult carers (Kavanaugh et al. 2014). However, such studies have tended to echo previous work undertaken in the UK and Australia. This work has highlighted the 'problem' in extreme cases that may be atypical of the population of young and young adult carers, and pinpointed low points in young and young adult carers’ lives, while ignoring variance over time. For this reason I will confine my outline of recent research to the UK and Australia.

Since 2011, there has been a major shift in how the Loughborough Group, now at Nottingham University, and most other researchers view young and young adult carers. They are now acknowledged to be a group of highly competent people, whose difficulties have generally derived from policies, professional practices and institutions, rather than from families or peer groups. A recent Loughborough Group report (Sempik & Becker 2013) found that over 80% of young carers at school 75

wanted to go to university. The main barrier they saw was affordability, with more than half believing they might not, or definitely would not, be able to afford do so. Less than a quarter had been bullied by peers. However, more than a third had not been fully supported by school staff, in the sense that they had informed the school about their position, but had not been directed to a link worker, as prescribed by the Carers Strategy of 1999, or assisted in any other way.

The Loughborough Group's shift from their earlier view of young carers as isolated school drop-outs may have had two possible causes. It may have been due to changes at the population level in how young people relate to each other. For example, the current generation have relatively liberal generational attitudes towards people who stand out, such as gays and drug takers (Social Attitudes Survey 2013). They may, therefore, be less likely to ostracise young and young adult carers for being different. However, this apparent shift may also be due to an improvement in methodology. In the most recent study undertaken by the Loughborough Group, carers were contacted via an online survey. In their previous research, respondents had been approached via young carers’ projects. Whereas their earlier work was biased towards the most deprived young carers, namely children of disabled single parents who are most likely to miss school (Olsen & Clarke 2003), the Loughborough Group’s newest research, outlined above, should have been more representative of all school-age young carers.

One Loughborough Group researcher (Aldridge 2014) has acknowledged in a methodological paper that young and young adult carers often dispute the idea that they are vulnerable. She suggested that they prefer to express themselves through photo-elicitation, because photography fits with their practical competencies, rather than because they are too weak to express themselves verbally. This analysis implies recognition that young and young adult carers may develop different skillsets to their peers, but still have at least an equivalent ability to succeed at tasks outside of caring.

There has been an even a bigger shift in Australian research towards viewing the status of the young or young adult carer as too commonplace, and inherently 76

subjective, for completely accurate assignment to be possible. Huddleston and West (2013) argued that if children in disability-affected households appear to know something about the cared-for person, then they should be included in assessments, regardless of whether they present as being young and young adult carers. The child's own caring role and support requirements, if any, will emerge through such conversations. Meanwhile, qualitative researchers, for example Smyth et al. (2011), have begun to argue that previous research has added to negative stereotypes of young and young adult carers, and deterred those who do not fit this stereotype from seeking help.

Their qualitative study (Smyth et al. 2011) was based on focus groups with young and young adult carers aged up to 25 who were attending an Australian camping event designed for them. The main focus was to ask retrospectively how respondents had come to self-identify as young or young adult carers, in order to determine why ‘hidden’ young carers in the population do not do so. This design had the methodological flaw that those who would not have identified with the young or young adult carer label to the extent of opting for a designated camping event would not have been included in the sample. The findings are nevertheless interesting in relation to late identifiers, some of whom were aged over 18, and had been carrying out personal care tasks for many years. They insisted, in relation to their younger selves, that doing so had not, at that time, made them carers. Instead, they felt that taking definite responsibility for household tasks on reaching young adulthood had brought them into the category of carers, whereas, previously, assisting a disabled family member was associated simply with being a helpful child.

The researchers concluded that some respondents internalised the identity of carer as a personal attribute, and felt that they could not imagine what they would do with their time if they were not occupied partly with care tasks. Like Olsen and Clarke (2003), cited above, Smyth et al. (2011) found that some respondents used the term ‘young carer’ as short-hand to explain the family’s situation, regardless of whether they consider the label appropriate to themselves. They also concluded, like Tarapdar (2007), that young people want services only when their situation becomes unmanageable at certain times, and do not need to stay connected to such services 77

throughout their childhoods. Some of Smyth et al.’s respondents rejected the term ‘young carer’ altogether on the grounds that their cared-for relative’s needs were too intermittent to require a ‘carer’. The main relevance of the study is, therefore, that it confirmed some of the findings of studies, such as Olsen and Clarke's (2003), that were critical of the Loughborough Group’s research for being too strongly accepting of the medical model of disability.

A further study of 23 young carers and 13 young adult carers (Hamilton & Anderson 2013) built directly on Smyth et al.'s findings about internalisation of caring attributes and role variability. The researchers found that many young and young adult carers needed to take longer than their peers over education, so that they could balance a caring role and study. Similarly, young adult carers sought out understanding employers who would allow them work patterns which fitted with their care responsibilities. The researchers concluded that, while younger carers believe that their career prospects will be enhanced by their caring experiences, young adult carers face having to fit their aspirations around their caring responsibilities (Hamilton & Anderson 2013). This finding is highly relevant to my thesis. It suggests that however much mutuality with teachers, employers and other authoritative adults might be needed and appreciated by young and young adult carers, such interactions often occur place in the context of displaced earlier aspirations. Nevertheless, new dreams can be built in the place of old ones, and my research has investigated whether the need, arising from their circumstances, of young and young adult carers to negotiate with employers and educational institutions might ultimately provide a career stimulus in itself. For example, Chapter 7: Findings from Interviews with Young and Young Adult Carers documents the cases of Peter (21, cares for physically disabled father and sister) and Lucy (19, cares for physically disabled mother and sister) who were both given additional responsibilities at work because they stood up to their older co-workers over health and disability issues.

The study undertaken by Doutre et al. (2013) is perhaps the only one, apart from my own, which has looked systematically at young and young adult carers’ relationships with the older generation in the context of their caring role. Doutre et al. carried out an interpretative phenomenological analysis of photo-elicitation and interviews with 78

six carers recruited from one rural young carers’ project. The researchers acknowledged the inherently nebulous status of being a young carer, as discussed above.

The term young carer is therefore contextual and often defined for administrative purposes. The variety of terms and definitions used in research concerning young carers means that research knowledge has limited utility in helping us to understand an individual’s experiences … being a member of a group may lead to social comparisons and negative evaluations of young carers about themselves, as they feel different to other group members. (Doutre et al. 2013: p31).

Doutre et al. also concluded from the literature that, despite decades of policy targeting, young and young adult carers still find the overall experience of being a carer disempowering. They argued that this sense of disempowerment arises from being forced to engage, on behalf of their disabled relatives, with professionals who expect to be dealing with adult carers. Doutre et al. concluded that the young and young adult carers whom they spoke to were finding their overall situation ‘quite hard’. The main reason was that the caring role was being undertaken in the context of other challenges, such as bereavement, economic hardship, antisocial community surroundings and parental separation (Doutre et al. 2013: p35). However, the young and young adult carers they interviewed mentioned features of their experiences which they found positive, such as emotional closeness to other young and young adult carers, feeling good about helping others, and being able to construct themselves as brave and available both in and out of the family. They deliberately used their free time to unwind from the stress of the caring role, as also found in the present research (Heyman & Heyman 2013). Doutre et al. concluded that some young and young adult carers greatly valued the skills which they had developed in dealing with difficult situations, but did not want to be stereotyped as having other skills that would be associated with an adult caring role. For example, one very young carer reported knowing how to talk round adults who had collapsed in despair onto the floor, but not having the 'inappropriately' adult skill of boiling a kettle.

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The relevance of Doutre et al.’s (2013) study to my research is that they looked at the broader biographical context, for example the dynamics of the family unit. Rather than problematising or pathologising young and young adult carers, as in so many previous studies, Doutre et al. presented young and young adult carers as decisionmakers who try to live a good family life, construct positive adult personalities, and build friendships through being a young or young adult carer. Most significantly, this is the only study which noted that young and young adult carers, like older adult carers, as discussed in the next chapter, may actively and deliberately construct a positive caring identity as a means of coping. The implication is that this construction is ongoing into young adulthood. My own research has explored how constructions of oneself and one’s actions impact on perceived possibilities for transition to adulthood.

3.6.1: Conclusions concerning young carers Between the first coining of the phrase 'young carer' in the 1990s and the present (2016), the debate about them has undergone two major shifts. Firstly, it shifted from highlighting a newly discovered 'problem', to critiquing the idea that 'young carers' and ‘young adult carers’ exist in significant numbers, or that their existence is necessarily a 'problem'. However, since around 2010, the debate has shifted to viewing the caring role as existing intermittently. It has come to be seen as just one of many causative factors behind longer term 'problems' such as permanent relationship breakdowns. This thesis makes an original contribution to knowledge by considering young people’s caring role as itself having a dynamic relationship with carers' long term trajectories. This starting-point stands in contrast to the assumption that any difficulties still being experienced in young adulthood result from the ongoing negative impact of the childhood caring role.

The final main section of this chapter will review literature across the historical time period of ‘young carer’ research in relation to young adult carers.

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3.7: Young adult carers 3.7.1: Findings about young adult carers The earliest explicit mention of young adult carers as a more vulnerable group than older adult carers was in Ungerson's (1987) case study research on 21 young adult or middle-aged carers of both genders. The study implicitly adopted a grounded theory methodology, since it relied on iterative development of sampling, and serendipity in the discovery of the new categories (Miller 2000). Ungerson found that young women were often bullied and scapegoated into caring for both their own relatives and their in-laws. The bullying was often carried out by older men. Many of the young women carers who participated in Ungerson's study felt that they had been tricked into becoming carers through being brought more and more into their older relatives’ lives in the period before those relatives became ill. The three male carers, in contrast, were middle-aged, free of responsibilities, such as for a child and/or husband, other than the care of the one person in question. In two out of the three cases considered, they treated informal caring as an occupational role.

Twenty years later, Becker and Becker (2008) carried out the only UK study focussing solely on young and young adult carers aged 16-25. The 16-18 year olds expressed two main concerns. One was with transition issues, such as wanting to go out more, at a time when their families were expecting them to increase their caring role. Their other concern was about having responsibility for finding alternative sources of care if and when they chose to leave home. They were also worried about the impending end of their young carers’ project support, and about coping with the aftermath of bad experiences of school. They felt that they had generally had poor careers advice. Nevertheless, almost all of the 16/17 year olds in the sample were at school or college. A number of them stated, like the former young carers studied by Frank et al. (1999), that being a carer had given them a determination to fight for their education. However, young carers’ workers reported that some female carers aged 16-18 were ending up in abusive relationships. This outcome was reported to be due to the need to be in a close relationships, combined with limited ability to go out and meet appropriate partners. 81

Respondents aged over 18 were primarily concerned with dealing with deterioration in their parent’s condition. They had a better knowledge of services than their younger counterparts. However, many were unaware of disability support services, and were, therefore, unable to use this alternative to increasing the amount of help they provided as their relative’s condition got worse. Like the young women who participated in Ungerson's study (1987), and the former young and young adult carers interviewed by Frank et al. (1999), they reported strained relationships with the cared-for person. On the positive side, the tasks related to looking after nondisabled siblings tended to decrease as these siblings got older. However, they were still experiencing the transition issues of younger carers, but with less support. For example, while many had received careers guidance, none had been given advice that took account of their caring role.

Some of these young people positively valued aspects of caring that this age-group identified, and which were not so apparent to younger carers. These aspects included pride in being able to contribute to the family, acquisition of people skills, and the ability to appreciate situations realistically, and with an independent mindset. Colleges were highly rated for being more flexible and treating them more like adults than schools, but the drop-out rate from college was, nevertheless, high. Where respondents had tried get help, so that they would not have to drop out, they had found college staff non-supportive. Some were away at university, and caring during holidays, and through phone support, or going home each day to care. The caring role for the daily travellers involved no less work than that of their counterparts who were officially full time carers. However, there was little evidence of universities being supportive in any way.

Many of the young and young adult carers interviewed by Becker and Becker (2008) reported choosing their friends and partners on the basis of needing someone sympathetic to the situation in the family of origin. In consequence, relationship choices were limited. They expressed frustration at their lack of time away from family. Limitations to opportunities for leisure, with only a third finding time for a hobby and participation in sport, were interpreted by the researchers as a concern 82

on health grounds. Although severe financial hardships could have been relieved by getting a part-time job, combining part-time work with a caring role was challenging for all, and impossible for some. None were using adult carers’ services for support with the above issues, although all were theoretically entitled to receive such services.

Another UK study that focussed almost exclusively on young adult carers, albeit unintentionally, was Beverley Skeggs' (1997) longitudinal ethnographic study of 83 young women aged 18-28 who were attending child or adult care related training courses. These young women turned out to be mostly young adult carers, mainly because so many people had chosen the course on the grounds that they had already had experience of care work within their family of origin. Skeggs suggested that the then Conservative Government had intended care work courses to be a way of training women to provide qualified informal care to their families in times of recession, and professional care in times of labour shortage.

Skeggs drew on the theoretical frameworks of Bourdieu and standpoint theorists, but her own approach involved a radical departure from both. Skeggs argued passionately against the end-of-class thesis, a dominant position within sociology in the late 1980s and early 1990s, the proponents of which asserted that social class should no longer be seen as a major determinant of youth transitions. She particularly saw flaws in the end-of-class thesis in relation to young working-class women. She argued that these women's choices and personal practices appeared to be determined by the need to stay above the income level where they would be stigmatised for being of a low class. In consequence, they had few choices as individuals about following personal interests and preferences. Instead, they pursued the least bad option in the situations in which they found themselves.

Skeggs focused on the censure, shame and disadvantage experienced by many working-class women, rather than on their ability or inability to conform to typical middle-class transitions to adulthood. Research participants did have high material aspirations for themselves and their children, and were particularly keen not to slip backwards once a given standard of living had been attained. However, Skeggs 83

convincingly argued that their ‘agency’ in relation to any upward social mobility was to be achieved via marriage and consumerism, for which they had to endure subordinate roles in intimate relationships. They had to pursue this pathway rather than through the paid care work that they had been trained for. In relation to dealing with professionals, the young women who participated in this study felt that they were fighting a losing battle to pass as respectable.

You know they're weighing you up and they ask you all these indirect questions as if you're too thick to know what they're getting at and you know all the time they're thinking 'she's poor, she's no good, she can't bring her kids up properly' and no matter what you do they've got your number. (Young woman quoted by Skeggs 1997: p3).

However, the women also experienced problems within their communities of origin, in which they were expected to be respectable while still presenting themselves according to working-class values. For example, on nights out, they were expected to be loud and scary, but also glamorous, and to play along with the pretence of sexual availability. Women from broken homes had additional problems establishing themselves as respectable in order to live a normal day-to-day life in their communities. This finding supports and extends the conclusion of Philip (2003), that young people’s relationships with the older generations who dominate communities can be mutually believed in and close, whilst at the same time being amplifiers of stigma and disadvantage.

I have extracted some quotations which Skeggs presented as typical of respondents at the start, during, and a number of years after participation in care work course. Through data like this, she showed that, in the longer term, young women may be more likely to be disempowered by engagement with middle-class dominated formal education than they were to be empowered.

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Before: I couldn't get a job, it's as simple as that and this was the easiest course to get on. (Respondent aged 16, talking about decision to do course, cited by Skeggs 1997: p66).

It's nothing really new ... we all know how to look after people and that so it's nice getting qualifications for something you know you are good at. (Respondent aged 16, talking about decision to do course, cited by Skeggs 1997: p58).

During: I sometimes wonder if me mam had been different, you know if she cared more, went out less, looked after me dad more and that ... I wonder if he'd have left ... when I'm married I'm going to make sure I'm really careful what I say. (Respondent, talking during course, cited by Skeggs 1997: p66).

After: I do make some effort because I want to be accepted so I do get changed when I go to pick [my son] up [from private nursery] ... I don't want them to look at you and say ‘they're the poor ones’ [because] it will be bad for [the children]. (Respondent, talking 10 years after course, cited by Skeggs 1997: p80).

These quotations suggest that formal education can add a new middle-class form of gender oppression to those already oppressed on the grounds of gender. This was shown in the ‘during’ quotation, when the respondent was answering a question about whether the course had changed her attitudes. She replied that she now felt that she needed to silence herself in any future marriage, in order to maintain it at all costs. Formerly, she had accepted her working-class community’s view, that if a man leaves, that is because such behaviour is typical of men, rarely the fault of his female partner. However, the quotations also suggest that the middle-class beliefs that were taught on the course were not deeply felt by respondents. Moreover, the post-course quotation documents the views of a respondent who preferred to wear clothes which 85

might be considered characteristic of ‘poor ones’ for comfort, unless there was a solid reason to maintain appearances.

3.7.2: Discussion of research methodologies Ungerson's (1987) sample was quite large, given that she was conducting casestudies. She offered a continuum of analysis between the different gender and age groups in the sample, avoiding an artificial separation whereby different categories of respondent would be subjected to different forms of analysis. This broad scope increased the credibility of the study. Ungerson provided a well-explained methodology, for example, explaining why she dropped certain questions.

Becker and Becker's (2008) sample was drawn entirely from young carers’ projects, and specialist projects for the families of substance abusers and people with mental health problems. This type of sampling bias is even more problematic for the young adult carer population than it is for the young carer population. Because young adult carers are known to be particularly unlikely to come forward for support, especially if they only took on their caring role during adulthood (Dearden and Becker 2004), young carers’ project are only likely to be in contact with a very specific subset of the young adult carer population. Moreover, male young and young adult carers are already overrepresented in young carers’ project, when compared to census data, which recorded far higher numbers of girls in caring roles (Dearden & Becker 2004). A focus on young adults who formerly used young carers’ projects is only going to continue this overrepresentation.

As in the Loughborough Group’s earlier studies of younger carers (Aldridge & Becker 2004; Aldridge & Becker 2003), bold statements were made without quoting the supporting evidence. For example, Dearden & Becker stated that being bereaved of the cared-for person leads to a need for support to establish a new identity. However, there was only one bereaved person in the sample, and she was not directly quoted or paraphrased on the issue of adopting a new identity. This issue is relevant to my

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thesis as it impacts on how relationships between carers and cared-for persons should be viewed.

Mutuality has already been defined above as being about equality within some aspects of a personal relationship between two or more people. It should therefore encourage the development of separate identities. In contrast, reciprocation is defined more broadly in the dictionary as ‘the act of making or doing something in return’ (Farlex 2012: p1). There is no requirement in this definition that the exchange should consist of items or services that are similar, or even of equal value. Hence, a mutual exchange of material goods or favours is one type of reciprocation, but not the only one. Marshal (1994: p441) specifically related the term ‘reciprocity’ to the notoriously unequal ‘compadrazgo’ (patronage under feudalism). Reciprocation based on unequal power is likely to repress individual identity formation.

Becker and Becker could have explored why the young people they interviewed were so dependent on their young carers’ projects. For the 16-18 year old group especially, there seems to have been a strong focus on the young people's concerns about their young and young adult carers group support finishing. Olsen and Clarke's (2003) critique of young carers’ projects is that they may increase the feeling of being set apart from children whose parents are not disabled. To some extent, Becker and Becker's (2008) findings support Olsen and Clarke’s argument, as the findings suggest that the young people in question did not want to look for alternatives to young carers’ project support. The notion of a young carer identity that had become artificially tied up with the project should at least have been considered, given that the study was done in 2008, five years after Olsen and Clarke (2003) raised the service dependency issue. Moreover, there should have been some attempt to understand the continuum of experience between age 16 and 25 rather than carrying out completely separate analyses on 16-18 year olds and 18-25 year olds.

The methodology of Skeggs' (1997) study was trustworthy and robust as the researcher engaged deeply and longitudinally in the field. There was a good sample size, and a high level of critical analysis. However, no distinction was made between 87

people who had different types of caring roles in their family of origin in order to determine differences in the impact of the caring role on the carers’ lives. Skeggs did, however, note that young women who came from difficult family backgrounds had particular problems in making their way in the world. This suggests that being a young or young adult carer may compound the problems inherent in coming from a family suffering from myriad forms of deprivation. Multiple deprivation may be a bigger risk factor than extent of caring role with respect to adverse outcomes for such carers.

3.7.3: Relevance to this thesis Ungerson's (1987) study sets the scene for this thesis, by documenting a stark picture of the intergenerational relationships of young adult carers. Her study suggested that young women carers were potentially vulnerable, and subject to manipulation by their male relatives. However, societal circumstances have changed considerably during the period of time since the study was conducted, especially in terms of young women’s levels of participation in further education (see Chapter 2: Context). Ungerson’s study also demonstrated the value of a grounded approach to analysing data from carers, particularly with respect to allowing categories and distinctions to emerge from the data.

The lack of interest in adult carers’ services, which are mainly used by parents of disabled children, is one of the most striking findings in Becker and Becker's (2008) study. The participants were young people who had had extensive experience of either young carers’ projects or substance abuse family support services. They could not be characterised as resistant to all services, because they had all used them in the past. The finding about lack of interest in adult carers’ services can be taken as an indication that these services may not be serving the needs of young adult carers, even if allowance is made for the possibility that the young people may have become specifically dependent on the young carers’ project. Becker and Becker (2008) generated some useful data and discussion about the benefits of being a carer. Their research provided an insight into the tension between independence and the need 88

for support, for example between enjoying the adult orientation of college on the one hand, and being highly likely to drop out on the other. Moreover, the retrospective accounts produced in the study contained some analysis from the young people themselves about peer relationships at transition ages, for instance with respect to the need to be around people who are sympathetic to their caring role. As already mentioned above, limiting one's social networks can have major implications, in terms of who young adult carers end up living with, where they end up living, and what types of job opportunities they are able to access.

Finally, Skeggs' (1997) study, unlike other research on adult carers, linked individual biographies and emerging young adult identities to the broader social structure. The theme of young adult women who had caring roles in their families of origin being sexually subservient, and dependent on male partners for social mobility, is directly relevant to this thesis. It shows that independence from the family of origin cannot be equated with independence from patriarchy. The evidence that women from broken families have particular struggles in establishing themselves as respectable also suggests that the impact of being a carer on transitions to adulthood might differ, depending on the severity of disadvantage in the family of origin. It shows how much people may depend on maintaining the family of origin as respectable in order to secure their future reputations. However, what Skeggs' study does not do is discuss the theme of intergenerational inequality directly.

3.8: Conclusion: Gaps in the research literature about young and young adult carers I will now discuss four gaps in the research literature which provide the starting point for the present thesis. Firstly, the bulk of the literature, including Olsen and Clarke's (2003) critical work, has been predicated on the assumption that appropriate care can only be given top-down, in one direction, from carer to cared-for person. For Olsen and Clarke, young people care when state services have failed parents. For most other writers, young people care when parents have failed, even though such parents may be able to rebuild a ‘normal’ parenting relationship with the help of 89

whole family support services. There has been a failure to recognise that the large numbers of young and young adult carers being identified through door-to-door and postal surveys might have not been visible to services because they did not need services at that level. They might be in regular caring roles. Their families might have other problems related to the family members’ disability. They might be in need of some intermittent packages of help. At the same time, the parents might, nevertheless, run the home, and support their children’s educational activities at a level of order and functionality that most people would envy. The lives of young and young adult carers in such families might be far from ‘normal’, or easy, and their caring role might, arguably, be considered inappropriate. However, their parent’s ability to parent might be unaffected, or even strengthened, by higher than average contact with the young person. Olsen and Clarke (2003) touched on this when they talked about the strategies that the disabled parents whom they interviewed employed to deal with adversity. What they did not consider was that the process of forming and implementing such strategies might have positive effects on parenting ability. Their focus was on talking about the gaps in support and service provision for disabled parents.

The second assumption that I will highlight is that boys and men are only considered separately with respect to the unlikelihood of their becoming carers, or the additional discrimination that they face on account of being boys. With the exception of Fox, researchers have ignored boys who have different but equally important roles to girls. In the case of the Loughborough Group’s later work, the presence of large numbers of male young and young adult carers is taken as evidence that caring is becoming more gender-neutral. More consideration needs to be given to how boys’ and girls’ caring roles might play out differently but equally. This has resulted in gender-blindness in policy and practice.

The third assumption which requires further examination is that appropriate caring roles arise from one's legally definable position in the family, rather than because people know each other through having lived in the same house. I have already cited 90

anthropological literature to suggest that the above assumption is invalid. Its adoption leads to disabled parents and disabled older siblings being underestimated with respect to the extent that they look out for, and look after, the young person who is caring for them. They are also underestimated in relation to the extent they know the young or young adult carer simply as a person.

The final assumption which I will challenge is that children and young people are temporary beings whose sole role is to be educated, and taught about life, rather than agents, whose actions can, and need to have, immediate effects on situations. This assumption is invalid as young people can choose to take on adult responsibilities without giving up any of their feelings of youthfulness, as O’Dell et al. (2010) showed in relation to young language-brokers. It is an unhelpful assumption to make, for the reasons highlighted by Newman (2002) and Tarapdar (2007). Young and young adult carers and their families are in unusual situations, but there is nothing unusual in the way that young people living in such situations act to secure their own futures.

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Chapter 4: The Literature on Adult Carers

4.1: Introduction The purpose of this chapter is to describe two competing perspectives in the literature concerned with adult carers that are of particular relevance to the professional practice of carer support. The first of these perspectives is one which views carers as a resource for social care provision. Such provision is designed to help society to meet its moral goal of enabling a decent day-to-day life in the community for sick and disabled people. From this perspective, sick and disabled people are the victims of a personal tragedy caused by either biology or a physical incident. The medical model of disability which underpins this perspective views professional support for carers as having the aim of enabling them to continue in the role for as long as they can. This leads to the idea that, since experienced carers have acquired characteristics such as ‘resilience’, discussed below, that qualify them for the caring role, it is better that they continue in that role than to hand over to someone less experienced. In consequence, many professionals apply the opposite set of assumptions to adult carers, whom they would support to stay in their roles, to those that they apply to young and young adult carers whom they, along with the rest of society, would like to remove from this role.

The second, competing, perspective is the notion of carers as potential victims of patriarchal or other power structures. These perceived victims are seen to be forced through their dependency and/or vulnerability to undertake work that could just as well be done by the state, or shared among family members. The work is, instead, pushed on to a small number of easily manipulated or coerced family members, who are usually women. From this perspective, caring is a ‘burden’ that should ideally be left to professionals, so that the work can be done for pay within the boundaries of health and safety legislation. This is a view with which many young adult carers would disagree, but it at least allows young and young adult carers to be seen on a continuum with older carers, rather than as a deviant, set-apart category.

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The present chapter does not offer a thorough critique of the literature concerned with. It looks only at the two perspectives outlined above. They are relevant primarily to the second research question considered in this thesis, which concerns professional practice. However, they also have implications for the first research question, that of the nature of young and young adult carers’ intergenerational relations. The second perspective implies that carers are unlikely to enjoy mutual intergenerational relations. It suggests that, in structural terms, carers continue in their role primarily because they are exploited on account of their age, gender and class-based vulnerabilities. It explicitly rejects the notion that they became carers because they were the ‘best’ choice in terms of closeness to the cared-for person. It suggests that the carer is more likely to have been pressured into the role than to be experiencing relations of mutuality with the older generation (Ungerson 1987). The first perspective, in contrast, implies that there is something intrinsically valuable about carers’ skills, attributes or relationship to the cared-for person. It rejects, or ignores, the issue of carer exploitation and, instead, assumes that the carer is acting out of reciprocation, mutuality or charity. As the final section of this chapter will show, the debate has moved on somewhat in recent years. It is now understood that someone can become a carer due to being a victim of external circumstances that have removed their choices, rather than through exploitation.

4.2: Perspectives that view carers as an appropriate resource - social work according to the Strengths Model In the early twentieth century, Mary Richmond began the attempt to move social work towards an empirical approach, in which the strengths and resources owned by service-users were acknowledged, alongside deficits and gaps in resources. The aim was that social workers should avoid moral judgements that automatically pathologise those whose lives were outside of the mainstream. Instead, they should try to build on clients’ own existing strategies and strengths (Van Breda 2001). Such an approach implies that carers who are willing and able to stay in their roles should not be encouraged away from them, simply because they are, for example, too young to meet society's expectations of how old a carer should be. Even those who

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are not currently coping should, according to the strengths model, be given support to enable them to start coping, rather than be removed from the situation.

The term 'strengths model' did not emerge until the 1990s, when social work professionals began to focus on the capabilities of their clients, including, for the first time, their clients’ resilience, which has been defined as:

[The ability to] bounce back in the face of significant trauma, to use external challenges as a stimulus for growth, and to use social supports as a source of resilience. (Mcquaide & Ehrenreich 1997, cited by Van Breda 2001: p.200).

The strengths model places emphasis on practitioners’ ability to be aware of the power differential between social worker and client. Under the strengths model, practitioners should be aware that the impact of structural inequality, sometimes in forms that can be taken to be individual deficits, can only be assessed properly after a detailed subjective narrative has been drawn out from the client. Contemporary practitioner manuals on the strengths model draw on both the disability movement and sociological accounts of older people as being limited by society (Oko 2011). Hence, this is a world view which is very much from the perspective of those promoting the rights of the cared-for person, rather than the rights of carers. Moreover, where young and young adult carers appear to want to make sacrifices for their families, and disabled people appear to want their young relative as their carer, these views are, under the strengths model, to be respected and developed in a positive direction. They should not be challenged on the basis of practitioners’ feelings about what is normal.

The strengths model was first applied to carers, and particularly the female carers, of male alcoholics, in the 1980s. It was a feminist social work response to the then increasing tendency of medical professionals to label such women as ‘co-dependent’ enablers of their relatives’ addictive behaviours.

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In essence when men are clearly impaired, their female partners must also be labelled as sick to maintain the balance of power in the relationship. (Anderson 1994: p679).

New strengths-based therapies were created for distressed adult daughters of alcoholics. These therapies focussed on helping clients to accept their parents’ stories as being distinct from their own, so that they could view the latters’ past actions towards them as being connected to those stories. The aim was to ensure that past difficulties in relationships could be left behind, self-fulfilling prophesies broken, and new healthy adult relationships formed (Anderson 1994: p680).

The strengths model is still considered particularly relevant to carers. Researchers such as Grant and Whittell (2001, 2000) found that carers make significantly more positive appraisals of their own coping abilities than do care managers. Grant and Whittell argued that carers' positive self-appraisals of their ability to cope (Lazarus & Folkman 1984) do not arise naturally from the subjective experience of being in that situation. They are not the direct result of love for the cared-for person, or of existing carer personality traits. Instead, they require hard emotional and intellectual work by the carer to deliberately change themselves into a person who can be ‘good’ at caring (Grant & Whittell 2000). Carers might pass through a phase of viewing their situation in a wholly negative way, and might seek escape or withdrawal, before embarking on a role as problem-solver within the family. Their actual coping will be dependent on building up a positive appraisal of their coping abilities. The process is complex, and requires a level of assertiveness towards professional systems that older carers often fail to achieve (Grant & Whittell 2000). In consequence, practitioners who adopt the strengths model are likely to take on the role of helping carers through the process of personal adaption, in order to foster individuals who are resilient enough to continue their caring role, while also maintaining a healthy sense of self.

However, other social work writers have criticised the strengths model for ignoring clear structures of oppression, which can only be dealt with if social workers judge and categorise situations differently to the ways in which their clients would assess 95

them. Van Breda (2001) argued that social workers can take clients’ narratives, and aspirations seriously, and encourage clients to recognise successes along the way, while recognising the possible need to firmly override a client's wishes, in order to protect a person from themselves. Similarly, social workers should be aware of unequal power relationships within people's families and social networks. They should avoid practising in a way which encourages people, particularly women, to see their strengths in a caring role as a reason to take on yet more unpaid and under-valued work in their homes and communities.

Gray (2011) argued that the dangers of the strengths model to carers are particularly acute in the current political environment. Celebrating people's ability to take responsibility for their own welfare means playing into the hands of neoliberal pressures to roll back the state, and place responsibility for social welfare back into the hands of families. Gray also pointed out that the victims of this process are likely to be primarily women.

4.3: Perspectives that view carers as potentially exploited victims of structures of dependency A substantial body of evidence suggests that caring has a dynamic impact through several phases of carers’ lives. They become more and more dependent on the family of origin, and the family comes to prefer to keep them in that role, rather than take up other available options. This dynamic was accepted uncritically by Young and Willmott (1962), as a demonstration of strong family and community networks. It later came to be seen as showing that carers were victims of exploitation, through being compelled to give up living their own lives in order to care for other people. Townsend’s (1963) study of the family life of 203 older people living in Bethnal Green in the early 1960s found some evidence of unmarried middle-aged children delaying marriage even further, in order to stay with and support their elderly mothers, particularly if the latter had been widowed fairly recently. Of the 626 such children identified by Townsend’s respondents, 13% were unmarried.

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Despite the large number in their thirties and forties all but seven of these unmarried children, five being sons, lived at home. … One or two unmarried daughters caring for an infirm mother said they could have married but did not because they were so fond of their mother … The evidence suggested that widows’ children often delayed marriage sometimes indefinitely … both sons and daughters marrying after losing their fathers married later than average … The bond between widow and married child may have been particularly close if the father died when the child was in his teens or twenties, rather than if he died when the child was an infant or only a few years old. The adolescent child is much more conscious of what the loss of the father means to him and to the family and of the consequent needs of his mother. (Townsend 1963: pp94-97).

The last part of the quotation does suggest that many caring roles became established because of a mutual understanding between parents and children about the implications of a husband/father being lost. However, there is also a suggestion that the carers were in a negative spiral, whereby they had already ‘wasted’ most of their life, by staying in their family of origin. In consequence, they decide that they might as well give up some more of the years left to them, in order to care for the now infirm surviving parent. These carers would probably never follow through with the transition to independence and marriage that was then the norm. Townsend implied that such people remained carers because of what they already lacked on account of their previous history as carers. However, the account was still essentially functionalist, and there was no suggestion in Townsend’s work that the carers he interviewed were being exploited or oppressed. Townsend may have been hinting that both sons and daughters took over the emotional and practical role of husbands, so that the mother and offspring became like 'an old married couple'.

The feminist literature on caring originated partly in response to Young and Willmott's (1962) uncritical acceptance of the idea that women's caring roles gave them, in the eyes of their families and communities, an equal, if not better, status than that of men. Young and Willmott had based this conclusion on the observation that women were the ones forming relationships with their children’s friends, and seeking to 97

influence landlords on behalf of their children, while the men simply went to work. However, Ungerson (1986), a feminist researcher, had personally experienced the tense dynamic between women and men around women's caring roles within her own family, in a community not unlike Bethnal Green. She could not relate to the notion of women being put up on a pedestal for looking after home and family. Her motivation for carrying out her own research into how both male and female carers came to be, and remain, carers arose from this starting-point (Ungerson 1986: preface). Both Ungerson and Lewis and Meredith (1988) found evidence of daughters whose whole lives had been directed by their parents towards the caring role that they eventually acquired, without regard for the daughter’s aspirations or feelings. For example, Lewis and Meredith’s (1988) study, undertaken from a feminist research perspective, provided examples of middle-aged daughters being retained by their parents, as an alternative to any form of independence, under the assumption that they would provide care when the parents reached old age.

In two cases the unmarried daughter had been given the parental home while the mother was still alive with the strong expectation, albeit implicit, that she would care in return. (Lewis and Meredith 1988: p30). More generally, within Lewis and Meredith’s sample of 41 middle-class carers, all of whom were middle aged daughters caring for mothers, and 29 of whom had never married, the least independent daughter was usually the one ‘chosen’ from several siblings to become the carer.

In many respects, the idea that a child should separate from its parents and move away … was poorly developed in our respondents … Anthea Ducquennin’s oral history of single women growing up around the First World War has documented situations in which the marriage opportunities of a daughter were sometimes deliberately foiled by parents in order to keep her at home. Such deliberate manipulation was not reported by our respondents but parental ambivalence was clear: ‘I think she would have liked me to get married because it would show her daughter was the same as everyone else

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… but she would also like her daughter to be with her’. (Lewis & Meredith 1988: pp22-3).

According to this account, parents made all the decisions, and took advantage of, their daughters’ dependency, rather than trying to encourage the young women in their aspirations.

On the other hand, Lewis and Meredith did find evidence that some of the carers were managing to maintain a degree of independence within the constraints imposed by their caring role. Some were able to integrate this role with other activity, for example by taking their mother to church in a wheelchair, so as to engage in events in which the carer was an active participant. Others were able to balance their caring role with another completely separate arena of life, such as a job, in which they were fully integrated socially with their colleagues and were able to set aside their carer identity. However, some carers were completely immersed in their carer identities, so that practically everything they did was connected to a caring task. Nevertheless, even the immersed carers retained enough of their own identities to be proud in the end to have given their mothers a good death. Ungerson’s (1986) study of 21 carers of all adult ages, including three men, revealed even more extreme cases, where young women were practically pre-groomed or bullied into the caring role, regardless of their pre-existing responsibilities to husbands and children. As mentioned in the previous chapter, the bullying was often carried out by the able-bodied husbands of incapacitated elderly women, including aunts, mothers and mothers-in-law. Like Aldridge and Becker (1993), Ungerson linked the inappropriate lone caring roles of young women to a traditional division of labour within the family.

It seems to me that there is considerable tension between fathers and their close female kin in the younger generation when it comes to deciding who should care for their elderly wives … Mrs Archer's father had never, according to both Mr and Mrs Archer, lifted a finger in the house. Indeed Mrs Archer said her mother acknowledged that she had spoilt her father – 'to keep the peace, 99

as it were, she's always had dinner on his plate for him'. (Ungerson 1987: p54).

In contrast, Ungerson found that some carers, particularly middle-class men caring for their wives, experienced caring as a rewarding role which fulfilled their sense of duty, and confirmed their interpersonal competence. Such experiences were cemented through their membership of carer support groups. The biggest source of distress for both male and female working-class carers related to a lack of confidence when dealing with health and social services. This finding suggests that, prior to carers being made officially visible through the NHS and Community Care Act (1990), being a confident carer required a pre-existing high status, such as that enjoyed by middle-class husbands caring for wives. Nowadays, informal carers enjoy a certain status regardless of class. This development, ironically, might heighten the concern raised by Fox’s (1995) professional respondents, that young and young adult carers might themselves prefer the self-esteem of a caring role to the less immediately gratifying experience of school and higher education.

4.4: Contemporary thinking about carers as givers and receivers of care, and supporting research In the late 1990s, Phillipson et al. (2001) returned to Bethnal Green to carry out a follow-up to Peter Townsend’s study of older people’s family lives. They covered three areas of the UK, but concluded that Bethnal Green had changed the most. Phillipson et al.’s aim was to compare like with like over time. However, their theory of ‘structured dependency’ had moved on somewhat since Townsend. It now included the medicalisation of old age, as well as the imposition by the state of a retirement age. The theory has been criticised for failing to recognise that societywide structures of support for older people have existed since pre-industrial times, and only disappeared temporarily in the nineteenth century (Johnson 1989).

Phillipson et al. (2001) obtained some evidence of what they termed the ‘professionalisation’ of family carers. They found that the term ‘carer’ had entered the vocabulary of families. They also identified a high level of intergenerational co100

residence with older people. The principal difference from the earlier 1960s study was that, in 2001, younger people who had experienced turbulent lives that had initially taken them away from home, for example a history of mental health problems, bankruptcy or prison, were more likely to be co-resident with parents or grandparents than those who had not had such turbulent lives. In Peter Townsend’s 1960s Bethnal Green, unmarried children only left home if they had experienced unusual twists in their lives. For instance, they left to be institutionalised for mental health problems, or because they had experienced upward social mobility through unusual means. By leaving home, they left their family of origin behind.

This finding suggests that staying home, and eventually becoming a carer, in a 1960s family of origin was a default for ageing unmarried individuals. Unusual circumstances caused unmarried people to deviate from this default by permanently leaving home. Today, in contrast, it has become normal to leave home long before getting married. Caring roles have become the realm of those who are unexpectedly dependent on the family of origin, often after returning to the family home following a period of independent living that had been unexpectedly cut short. This group of people includes a high number of carers who have care needs of their own (Phillipson et al. 2001: p254). The term ‘independent living’ is more frequently associated with the disability movement in relation to disabled people living in their homes supported by professional carers, rather than in residential homes or the home of the family of origin. However, in this context, it is used to describe any young person managing to pay for and run their own home away from the family of origin.

It has often been suggested that the post-industrial period in the UK has generally been one in which increasing stigma and negativity has been directed towards the concept of care. This attitude persists even though most of the population comes to know from experience that giving and receiving care is universal (Lawson 2007; Lynch 2005). As Lawson argued convincingly, from a human geography perspective:

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Under neoliberal principles, care is a private affair, occurring in homes and families. In the privatization of care, we construct certain types of people as in need of care – the infirm, the young/elderly, the dependent, the flawed – ignoring the fact that we, all of us, give and need care. (Lawson 2007: p3).

Moreover:

Whereas justice ... is understood rationally and as a universal; care is not drawn on the political theorist's map, it is ... more practical than principle. It is highly emotional and irrational. It is women's work. (Brown 2003, cited by Lawson 2007: p.3).

Lynch et al.'s (2009) case study research on 30 carers and care recipients suggested that the world of care-givers and cared-for people is often one of shared daily schedules and similar values, particularly where the carer was also disabled. However, the State was seen to undermine carers at every turn. Lynch et al. found that carers had almost no control over their days, which were often spent rushing from appointment to appointment, only to be kept waiting. Very few carers were in the position of 'care managers' who could ask other people for help. Other people who could have helped tended, instead, to expect the carers to cater for them when they visited carer’s homes. Carers were well-aware that in other roles, for example in professional jobs where appointments can be scheduled, there is some control over one's time. For carers, there is none. However, full-time male carers had more of a sense of control over their time than had their female equivalents, due to the latter being viewed by others as ‘natural’ carers, who ‘should’ be able to cope (Lynch et al., 2009: p156).

The most notable feature of the carers studied by Lynch (2009) in relation to the present thesis is that their situations had come about in a completely different way to those of the young and young adult carers described in the last chapter. They were mostly parents of disabled children, or spouses of disabled adults. They carried out their caring role out of a sense of duty which arose from their being in the nomi nal category of husband, wife, parent or geographically closest offspring. This is quite 102

different to the position of young and young adult carers who see their role as more situational (Becker 2005). To quote one respondent of Lynch’s (2009: p120) on her choice to continue her caring role for her adult disabled child:

He is mine and he is here and I have to look after him and I will continue to look after him. I just couldn't walk away and put him in a home … it is a totally different thing looking after your own child because they are part of you. The role of caring for one’s own disabled child is, in this case, experienced as an irreducible duty born of ‘love relations’, not a practical ‘burden’ that can be transferred to other people. But the disabled child is not expected to reciprocate the care being given, whereas a disabled parent might reciprocate, or more than reciprocate, the care given by their young or young adult carer (Olsen & Clarke 2003). On the other hand, the practical experience of being undermined as carers, and the sharing of those feelings of frustration with the cared-for person, are likely to be the same for young and young adult carers as for carers aged over 25, even though they fulfil their role in the context of a different type of relationship to the cared-for person.

4.5: Conclusion Young and young adult carers with caring responsibilities in the family of origin do not fit into either the 'resource to be supported' or the 'victims to be rescued' template. In contrast to the middle-aged respondents interviewed by Lewis and Meredith (1988), or the parents of disabled children who participated in Lynch's (2009) study, it is unlikely that young and young adult carers choose their role out of a willingness to dedicate themselves long-term to the cared-for person. All of the literature on adult carers’ subjective experiences of coping therefore needs to be treated with caution if it is to be applied to young and young adult carers. However, policy-makers and practitioners will have been influenced by both of these perspectives, even if it is only in terms of constructing reasons to justify the exclusion of young and young adult carers from the standards by which older adult carers are judged. 103

However, as argued in Chapter 1: Introduction and Rationale, contemporary young and young adult carers are not straightforward victims of bullying and trickery either. They are not, in the main, like Ungerson's (1986) young women who had been bullied into caring for in-laws primarily because a male relative chose them as an easy target. As the research on young and young adult carers discussed in Chapter 1 suggests, they are people who generally drift into caring, rather than either choosing the role, or being directly cast into it.

The most pertinent study from the mainstream literature concerning carers is therefore Phillipson et al.'s (2001) follow-up to the Townsend study. The most relevant finding from this study is the notion of unusual external circumstances making people dependent on their family of origin. This phenomenon was not evident in previous studies. That this is a methodological replication of Townsend study makes the contrast with Townsend’s earlier findings even more interesting. It raises the question of whether young and young adult carers are likely to take on the caring role because they are victims of personal circumstances that are external to the family, particularly if they become longer-term carers. This is a state of affairs much more likely to lead to mutuality with the cared-for person than is the situation of those who, without considering their own circumstance, feel obliged to help, or are exploited into helping, their disabled relative. However, relevant themes emerging from Lewis and Meredith’s (1988) study raise questions about ‘successful’ transition, and its timing. The participants in their study did not consider it to be abnormal for adults to fail to separate from their parents. Finally, both Phillipson (2001) and Lynch (2009) raise the possibility of people being more, rather than less, likely to become carers if they have care needs themselves.

The issue of the dynamics of dependency impacting on young adults as they drift into caring roles was raised in the last chapter. It was also pointed out that such dependency needs to be placed in the context of the even more fundamental relationships between people who have spent decades together in a family household unit. Such people are likely yo know each other with an intimacy that has 104

nothing to do with the legal or nominal categorisation of their relationships. I argued that the dilemma of whether the state should intervene to change the course of disadvantaged young and young adult carers' lives is made all the more difficult by the existence of these irreducible relationships. This review of the mainstream research on adult carers has allowed me to add yet another dimension to my analysis of the relationships between carer and cared-for person, namely that of love relations, and the fundamental need of human beings to give and receive care. Following Lynch and Walsh (2009), ‘care’ can now be defined for the purpose of this thesis as time and effort spent entirely in meeting the needs of another person. Care exists at three levels of relationship. The primary level involves work associated with meeting needs within ‘love relations’ amongst those who class themselves as family. The secondary level entails work associated with meeting needs within one’s selfdefined community. Finally, the tertiary level involves work associated with meeting the needs of those with whom one groups oneself for political reasons (Lynch & Walsh 2009: p40). Most, if not all, people have a need to give and receive care to some extent, regardless of their disability status. Nevertheless, in this thesis, I will maintain the legal usage of the term ‘carer’ and 'cared-for person' as being specifically related to sickness and disability. Following the Carers (Recognition and Services) Act (1995), a ‘carer’ is defined as a person who gives regular help to a disabled or sick family member. Where I wish to talk about the givers of other forms of care that are relevant to this study, namely parental care and professional care, I will use the terms ‘parent’, ‘guardian’ and ‘professional carer’, as appropriate. This terminology is used entirely for the purpose of maintaining distinctions that the services under investigation themselves draw on. There is controversy about young carers’ services including young people who never actually carry out primary or secondary caring tasks. However, there is no doubt that these services target families who have in some way been affected by disability, and exclude other young givers of care, such as teenage parents (Olsen & Clarke 2003).

Phillipson’s (2001) finding that many of the carers included in their study had care needs of their own particularly highlights the tendency for people to become more and more interdependent as time goes on. This phenomenon cannot be seen clearly 105

in research on younger carers, but needs to be kept in mind when trying to understand the direction of processes already in evidence. In the same way that intergenerational mutuality is not always welcome (Philip 2006), the need of young people, like anyone else, to give as well as receive care should not lead us to think that it is necessarily beneficial for them to have significant caring roles.

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Chapter 5: Methodology

5.1.: Introduction This chapter covers the philosophy of the research, study design, grounded elements in the research process, and some practical reflections on how well the methodology worked. Much of the chapter focuses on the challenges of balancing a realist epistemology with the inevitable practical difficulties of interpreting respondents’ narratives. A secondary focus of the chapter is the ethical challenge of trying to ensure that all respondents had a positive experience of taking part in the research, given the varying contexts in which they contributed to the study.

The methodology was designed to support the investigation of the two overarching research questions: Research question 1: How do young and young adult carers see the nature and value of their relationships with older generations to have been affected by their caring role? Research question 2: How do young carers’ workers’ perceptions of the impact on relationships with older generations of being a young or young adult carer differ from those of carers themselves?

The research questions were explored through biographical interviews with young and young adult carers, and in-depth interviews with young carers’ workers, which addressed these issues, as discussed below. Biographical interviews with young and young adult carers allowed their perceptions of the evolving impact of their situation to be examined. In-depth interviews with young carers’ workers enabled their views of this impact to be compared with the perspectives of young and young adult carers.

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5.2: Key methodological terms The following subsections will discuss key theoretical terms that are most relevant to the subject matter of this thesis. Tackling a research question on the impact on young and young adult carers of unusually close relationships with older generations requires a broad understanding of young adults’ position in families who are dependent on the welfare state. In addition, it demands understanding of carers in general, and of marginalised women carers in particular. Finally, it requires understanding of how marginalised youths make choices about their futures. I started the research from the assumption that, although the welfare state pushes people into compliance with the norms dictated by social structures, the actual experience of being a carer is likely to force people to exercise agency in challenging such structures. I also assumed that there would be contradictions in respondents' belief systems, particularly in relation to their views about who most 'naturally' takes on caring roles.

5.2.1: Social structures Social structures are human systems of constraint that exist independently of the particular individuals who live and act within them (Giddens 1995). The founders of sociology all drew on the notion of social structure, although in different ways. For Durkheim, social structures involved continually evolving organic consensus. Marx identified structures of material oppression, to be overthrown through inevitable revolution. For Weber, social structures were imposed through political systems and bureaucracies, but could occasionally be modified by charismatic leaders (Giddens 1995). Relevant examples of social structures for this research include embedded socio-economic differences linked to locality, systems of law, welfare systems, policy frameworks and the youth labour market. These systems affect not only the resources and opportunities available to young and young adult carers to achieve self-efficacy in their transition to adulthood. They also shape the linguistic possibilities for presenting themselves as they want to be seen. In this respect, my research is consistent with the Neo-Marxist approach (Skeggs 1997). From this perspective, young and young adult carers are viewed as people with little choice

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other than to challenge the social structures which contradict, and materially encroach on, their everyday realities.

5.2.2: Agency Agency is the capacity of a living being to act autonomously in relation to restraints arising from pre-existing social structures. Functionalist sociologists such as Parsons (1949) believed that individuals’ behaviour is entirely determined by the structures that they live in, regardless of whether they view their actions as being rationally determined or not. Most non-functionalist sociologists, such as Giddens (1984), hold that there is an interconnection between structure and agency, as human-beings try to exercise agency, but find themselves constrained by structure.

Norms figure as 'factual' boundaries of social life to which a variety of manipulative attitudes are possible … motives tend to have a direct purchase on action only in relatively unusual circumstances, situations which in some way break with routine (Giddens 1984: pp4-6).

Giddens was suggesting that, although social actors’ pre-existing motives tend to be subsumed as they encounter day-to-day reality, they do display agency in their reactions to being thwarted in this way. Giddens argued that new structures could be created through such reactive agency.

The approach to agency which I have drawn on in relation to the present thesis was derived from Skeggs (2005, 1997). Skeggs argued that, far from trying to break free from structural constraints, social actors often show the most agency in trying to fit in with structures that reject, oppress or marginalise them. They tend to only invent new structural paths when all other options for survival have been exhausted. For example, a young woman carer who made excuses for male relatives who could have done more to help (Aldridge & Becker 1993) was attempting to maintain a fictive appearance of normality and appropriateness, whilst operating within state-led 109

structures that were unsuited to the reality of her existence. If she had admitted that she was, in effect, being exploited by her male relatives, like the married young adult carers discussed by Ungerson (1987), then the family situation might have been deemed unstable, and her younger siblings taken into local authority care. She used agency in constructing a fictive account of family harmony in order to fulfil her desire to keep her family together, within a structure that restricted how a family is 'allowed' to present itself.

5.2.3: Modernism and postmodernism Modernists believe in objective reality. Postmodernists believe that all viewpoints are equally valid, and that, therefore, claims to an objective reality should be deconstructed. Following Skeggs (1997), I reject all forms of postmodernism, including standpoint theory, discussed below, on the grounds that this approach falsely suggests that marginalised people have no stake in the existing social order. 'Hard' standpoint theory (Hammersley 1999) states that, because marginalised people have no stake in status quo ontologies, they must therefore have perspectives that can be used to de-construct the very idea of universalism. For example, Gilligan (1981) used girls' personal narratives to not only undermine the notion of a universal moral development path in children, but also to conclude that all universalism in human science is invalid.

In contrast, Skeggs (1997) compared the situations of people with high social status, who can present as deliberately outrageous in their dress and behaviour without consequence, to those with the least social status. Skeggs concluded that the latter have proportionally more to lose than the former from a disruption of modernist ontologies, as only modernist theory can acknowledge, explain and attempt to remedy the realities of their lives. For example, Skeggs found that working-class young women from broken homes suffered more discrimination from their fellow housing estates dwellers than they would have experienced elsewhere in society. Nevertheless, they talked about themselves as being in opposition to mainstream society, and sided with their local tormentors. This belief could have only been 110

challenged through modernist feminist consciousness-raising techniques. Such techniques would uncover structural links between society's judgemental behaviour and the often oppressive behaviour of the girls' fathers. Meanwhile, postmodernists would refuse to challenge this family structure because their relativist starting point would hold that all accounts are equally valid.

If young and young adult carers disagree with specific mainstream beliefs about the effects of specific illnesses for example, it will be on the grounds of their own experiences, often supplemented by formal learning on care-work courses. It will not be because their standpoint is a challenge to the very notion of objective fact. If anything, they are likely to be frustrated by mainstream failures to acknowledge clearly observable facts about carers and disability. For example, one participant in the present study was upset by a supermarket’s failure to provide a sufficient number of disabled parking bays for the known proportion of mobility-impaired people in the population. She would no doubt have been angry to learn that some academic voices would, if they were to be logically consistent, claim that the existence of impairment-related needs are a matter of perspective. Postmodernist academics potentially undermine the rights and acknowledgements that people such as young and young adult carers continually fight for, by framing prevalences and other population statistics as themselves socially constructed.

5.3: Grounded approaches to research methodology Grounded approaches to research methodology (Skeggs 1997; Bertaux 1981) are linked to critical realism. The term is used broadly by writers on methodology such as Miller (2000), to describe approaches that rely on the discovery of new lines of enquiry during the course of a research project (Corbin & Strauss 2014; Strauss & Corbin 1990). A grounded approach involves not so much a set of specific techniques as a depiction of a broad orientation to research. It denotes a belief that research, particularly qualitative forms, can be about step-by-step discovery rather than hypothesis-testing.

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Grounded approaches investigate distinct social phenomenon, for example the bakery trade in Paris (Bertaux 1981), in order to better understand developments and continuities that involve the whole of society. Bertaux drew on this context in order to analyse the continued appropriation of the rural labour force by French urban society. Methodologically, such approaches use theoretical sampling (Corbin & Strauss 2014) involving cycles of design, data collection and analysis that can be adapted to expand on newly discovered concepts from previous cycles. As explained in the Introduction, I chose young and young adult carers' transitions to full adulthood as a research topic because I believed that they were a group whose circumstances would lead them to challenge the world of adults.

Grounded approaches reject both the postmodernist ontology of deconstruction, and the postpositivist ontology of seeking out multiple perspectives that are internally consistent enough to be held up as a challenge to the status-quo (Bentley & Pugalis 2013). Critical realists, instead, take social construction, and the resulting inconsistencies in people's narratives, as part of the fabric of reality. Again, taking the example of the young woman who made excuses for her underperforming male family members, my priority would have been to find out how these beliefs affected her other choices and, if possible, to try to uncover their origins. A postmodernist would explore the beliefs themselves, in order to hold them up as an alternative view of reality arising from an outsider ontology. A postpositivist would reject that part of the account as an irrelevant repetition of well-known views, and focus on the parts that serve as a direct contrast to the status-quo perspective. One reason that grounded approaches require cycles of design, data collection and analysis is that apparent contradictions within narratives can emerge in early cycles, and can be explored through later ones.

5.4: A realist biographical approach This research project draws on a realist biographical approach, following Bertaux (1981). The goal of the research was to look for mutual intergenerational relationships, and their role in young and young adult carers’ life-histories. The realist 112

aspect meant that the research was inductive, and that the data collection process continued until ‘saturation’ was achieved. ‘Saturation’ is the point at which patterns in data become consistent, and it is judged that no new information relating to the emergent analytical framework is being generated (Miller 2000: p11).

Miller argues that biographical approaches can be difficult to classify in terms of epistemology, because most biographical researchers make use of the narrative methods employed by postmodernist researchers, but only a small proportion are postmodernists themselves. The distinction between narrative and factual history becomes particularly important in two circumstances: when respondents present an impression that one event had an impact on their decision-making about a second event; and when they make judgements about other peoples’ motivations that are not based on actual conversations with them. For example, constructions of other people’s motivations might reveal that supposed radicals actually hold quite conservative beliefs about gender. However, the difference between the two epistemologies is critical, as postmodernist biographical researchers are primarily interested in how family or life stories develop during the course of the interview. In contrast, realist biographical researchers seek to discover family or life-histories that exist independently of the person telling them or asking about them.

In common with postmodernists, realists accept that the presentation and contextualisation of biographical facts within the respondent’s narrative will be the product of both interviewer-interviewee co-construction, and of other social constructs that both researcher and researched bring into the interview (Miller 2000: p17). The key epistemological assumption behind realist biographical research is that the study of micro-structures and social processes, for example those occurring within families, can reveal the ways in which macro-social structures and processes come to impact on individual lives (Miller 2000: p16). Moreover, the role of the realist biographical researcher is to exercise judgement about which of the respondent’s statements about events are most likely to be valid. One way of attempting to do so is to judge whether the respondent could possibly have known whether their 113

statements were true. For example, the researcher may seek to assess whether a respondent was actually present when a described event took place, and whether the event was of the kind that could be materially witnessed. Postmodernist researchers, in contrast, are more interested in the stories that people tell, and the ways in which discourses impact on the construction of narratives. They are not primarily concerned with making judgements about the validity of respondents’ accounts (Stanley 1992).

Since biographies consist of the unique stories of individuals, biographical research must at least partly be qualitative (Millar 2000). Moreover, key life events need to be covered in a fairly, although not completely, standardised way for all respondents in the sample, in order to achieve comparability. Therefore, most biographical interviewing is semi-structured.

Finally, biographical realism requires a focus on using the narratives of individuals to challenge social-scientific views of social structures. Bertaux’s key finding was that social scientists, including himself at the beginning of the project, had been looking at the wrong social group, the urban working-class, when trying to understand the continuity of urban cottage industries. He found that such industries were being staffed and managed by rural incomers. Bertaux (1981) concluded that urban capitalism was continuing to rely on the colonisation of additional territory, and was therefore bound to eventually collapse under its own contradictions, as predicted by Marx and Engels. The research focus was thus on a system, not on a pre-identifiable social group whose views could be 'sampled'.

It might be possible to carry out a focus group on the issue of biography, perhaps by getting all participants to discuss a case study containing a person’s whole lifehistory. This would constitute an extended version of O’Dell et al.’s (2010) methodology (see Chapter 3: Literature Review). However, one could not collect the biographies themselves through a group discussion, as this would fragment each 114

individual narrative. A biographical research interviewer’s key aim should be to fragment the narrative as little as possible, while nevertheless ensuring that relevant factual points have been covered. The researcher can go on to compare similar parts of different people’s biographies at the analysis stage, but only in the context of seeing each individual biography as a whole.

Miller (2000) used the term ‘postpositivist’ to describe biographical researchers who seek either to take respondent’s biographical narratives at face value, or to reject them as invalid. Postpositivists operate much like positivists testing the validity of questionnaire responses. They are open to plural interpretations, and do not seek absolute definitive answers. In consequence, they do not attempt to de-construct people's existing belief systems. In contrast, realists embrace the idea that an account can be a product of social construction, but nevertheless as valid as any other, since all accounts are, in their presentation at least, generated in this way.

However, despite agreeing with postmodernists on the importance of social construction, realists differ in other respects. Realists aim to ensure that actual events are being described by respondents in biographical research. They accept the validity of biographical facts that a respondent is able to confirm through direct experience. At the same time, they question whether a respondent’s judgement on events outside that respondent’s direct experience, for example about the extent to which other carers actually help the cared-for person in the respondent’s absence, can ever be unaffected by society’s rhetoric. For instance, carers’ accounts about other carers will always be affected by societal rhetoric on who ‘should’ ideally be a carer (Henwood & Pidgeon 1995). Moreover, realists believe that real, objectively describable social structures lie behind the events that respondents describe, and that these structures can be revealed via the researcher’s analysis.

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5.5: Rationale for, and use of, a methodology derived from narratives The researcher did not use a formal narrative methodology (Riessman 1993) in the sense of developing a structural analysis of the ‘stories’ presented by participants in the research interviews. However, the methodology did rely on analysis of, and comparisons between, the accounts of the lives of young and young adult carers given by themselves and their support workers in research interviews. As discussed above, the ontological and epistemological positions underpinning the study were realist, predicated on the assumption that such accounts provide insights, however limited, into the material, social and psychological realities of those who produce them. As illustrated below, analysis of the meaningful content of what was said was supported by some consideration of narrative features, as well as by informal observation.

The limitations of relying on socially constructed interview accounts have been widely discussed (Silverman 2006). Respondents may generate socially desirable narratives about themselves. For example, in relation to the present study, young and young adult carers may gloss over hostile feelings towards those whom they care for. They may be unaware of, and therefore unable to talk about, underlying drivers for their behaviour. On the other hand, such narratives offer, at minimum, indications of the stories about themselves which interviewees wish the researcher to accept. However, the young carers’ workers and young and young adult carers who participated in the study were mostly motivated by a desire to provide information which could lead to service improvements. The points which they made, for instance about the need for more flexibility in the education system, seem entirely valid.

Moreover, it was possible to compare and contrast the accounts given by young and young adult carers and young carers’ workers, not with the aim of ‘triangulation’ of their truth value, but in order to generate insights into social tensions reflected in narrative discrepancies. For example, gaps between young and young adult carers’ accounts of learning from caring and the more negative view put forward by some young carers’ workers seemed to reflect an underlying discrepancy about how to

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view a role which did not fit into the standard template of development into young adulthood.

I drew on a narrative approach throughout the data analysis, looking to understand those parts of respondents' accounts that seemed to be products of social constructions (Stanley 1992). As mentioned above, an initial focus on narratives is appropriate for carers, because the telling of their life-histories is bound to contain both silences and overstatements. For example, linking events will often be left out of carers' narratives about how they became carers, because respondents assume them to be part of the 'natural' order of things (Lynch 2009). The interviewer can try to use prompts, in order to find out whether the apparently 'natural' process of taking on a particular care task followed on from what was said or done by members of the respondent's social network. However, the interviewer may be obliged to stop such a line of enquiry if the respondent shows signs of discomfort (see Ethics section below), or the respondent may genuinely fail to remember. Therefore, it is essential to do some narrative analysis. For instance, if a girl gives her gender as the reason that she 'naturally' wanted to take on a caring role, it is worth looking through the whole interview to see whether that person has other beliefs about the differences between girls and boys. O'Dell et al. (2010) did this when they highlighted how their respondents used their own experiences as a frame of reference to give a culturally derived narrative about young and young adult carers being helpless and isolated.

In carrying out the fieldwork, I was able to triangulate interview-generated narratives with observation to some extent, because most respondents were interviewed in a location that had meaning to them. In consequence, I saw many of the phenomena that respondents mentioned as affecting their day-to-day lives. Disparate examples included: backyard 'junk' in need of moving; acknowledgement of the cared-for person's abilities, or its absence; a constantly beeping mobile phone. Inevitably, what I could observe varied somewhat haphazardly from case to case. In the same way, what I heard from different respondents to some extent depended on how interview conversations developed. In many ways, my later stage methodology was a struggle

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to overcome this limitation, and to place research participants on a meaningful spectrum in relation to my emerging theory.

5.6: Qualitative methods I argued in the preceding two chapters that the conceptual limitations of existing literature concerning young and young adult carers arise primarily from gaps in the methods of data analysis and sampling, and the mostly top-down nature of questionnaire design. Where researchers such as O’Dell et al. (2010), Doutre (2013) and Thomas et al. (2003) did engage with their respondents in a way that respected and contextualised the respondents’ own frames of reference, more critical themes emerged. However, these themes led the above researchers to do no more than question existing constructs of the problem. They did not use alternative constructs to uncover the structural causes of actual events in respondents’ lives.

For this reason, my research design had to be qualitative. It also had to be realist. It had to encompass biographical facts obtained through the narratives I was receiving, for example, about the educational and employment status of respondents, as well as the socially constructed nature of the narratives themselves. My analysis questions these narratives, and the terms that respondents use, particularly to assess whether like is being compared with like. For example, do respondents mean the same when they say that two life decisions are unrelated? However, I did accept clear biographical statements as evidence about what had actually happened. For instance, if a respondent stated that they had dropped out of school before the cared-for person even developed their condition, then I would accept that the decision to leave school was unrelated to the adoption of a caring role.

Qualitative research also provides a good framework for deviant case analysis. It was assumed from the outset that contradictions between and within respondents’ accounts would be as interesting as consistencies. In order to do this, I followed the protocol recommended by Wengraf (2001) of asking the carers factual questions, for example about what they did, and whom, if anyone, they talked to before deciding. I 118

then followed up on their answer with prompts designed to draw out opinions and perceptions. The aim of asking questions in this way was to avoid making carers feel that they had to be consistent in their opinions. This approach was also designed to remove the need for questions that would compel the respondent to challenge the interviewer, such as, 'Some people say … What do you think?’

However, there was a limitation on the extent to which I was able to carry through with the above, because there were many ways in which I could not avoid influencing respondents’ views of what they should say in the interview. For example, I could not avoid referring to them as ‘young’, as ‘carers’, and as having an ‘ill or disabled’ family member since I was asking them about services for these categories of people. Many stated explicitly that they did not see themselves as one or other of the above (see Chapter 7: Findings from Interviews with Young and Young Adult Carers). In addition, I could not help being more sensitised to some issues than others, particularly in the earlier round of interviews. A full account of the interview schedule is given below in Section 6.

5.7: Reflectivity Charmaz (2014: p344) defined reflectivity as, ‘. Hall and Callery (2001: p263) have identified a tension between postpositivist and postmodern accounts of reflectivity, also addressed below in relation to realist biographical approaches. They argued that a postpositivist view of reflectivity, (e.g. Charmaz 1990), would view it as a way of enhancing the rigour of data analysis. In contrast, postmodernists would see reflectivity as a means of uncovering multiple, co-constructed narratives. My research goal, which was to better understand intergenerational issues involving young and young adult carers, led me, in practice, towards the former approach, of using reflectivity to attempt to strengthen analytic validity. The main reflective issues which I took into account are outlined briefly below. One such issue which I identified as of particular importance during the course of the research, that of the likely impact of being a female researcher talking to young male respondents, it taken up in Section 8.7 of the Discussion chapter. 119

Inevitably, the responses which I received from research participants will have been influenced by my age, gender, social background and personal characteristics. It is difficult or impossible to assess such influences because the researcher remains a constant in the research, but I attempted to reflect on them. For example, I was aware that many carer respondents were of the opposite gender to, and younger than, myself. I spent some time considering, for instance, whether young men might have opened up to me more if I had also been a young man. I tentatively concluded that, since these men were most often talking about the plight of their mother, they might have found it easier to trust a woman to hear their account sensitively. Most told anecdotes about how difficult they found it to trust the majority of their male friends. The young women who participated in the study, in contrast, had other women to talk to, and were visibly less stimulated by talking to me. This may also have been the reason why I found it easier to recruit men than women.

I tried to keep a record of any indications of respondents’ attitudes towards myself and my research. I also kept an ongoing record of my own feelings (Oakley 2005). Every respondent used the ‘Any other comments?’ question as an opportunity to position themselves in relation to the interview. Their responses ranged from, ‘No, this was very thorough - you asked about all the things I expected’, to, ‘No, I just talked to [the project workers] and filled in the [interview] consent form’. The latter response conveys a sense that the respondent was still a little unsure at the end of the interview about whether it had been worth taking part. However, she, nevertheless, gave the longest and most personally revealing interview of any of the respondents aged under 21. Interestingly, both of the above comments came from 16 year olds, but there were a good number of responses lying in-between from across the age range.

Indications of interviewee attitudes towards the research provided contextual clues which informed my interpretations of the rest of the interview material. In early rounds of interviewing, I found it hard to see the relevance of respondents’ attitudes to the research. They ranged from respectfully making use of my ‘expert’ view to the 120

respondent coming across as the expert talking to me in order to correct common misconceptions. However, in later rounds, I started to appreciate that each respondent displayed different attitudes to the research at different stages in the interview, depending on what was being asked and their emotional state. I was able to slightly adapt the interview schedule in response.

Tarapdar (2007) has shown that young and young adult carers respond differently to peer-interviewers than they do to interviewers older than themselves. I know that one respondent was aware of my being aged under 35 myself, because she gestured to herself and me and referred to ‘us’, when she was talking about people under 35 in general. Another respondent, who was doing research on young people for a postgraduate course, compared his situation as a researcher to mine. Many of the young and young adult carer research participants seemed to see me as a peer interviewer.

My efforts to be aware of the context in which interview narratives were being produced illustrates the point made by Miller (2000), mentioned above, that biographical researchers are influenced by postmodernist methodology, notwithstanding their realist belief that life-histories exist independently of the telling of them. In particular, I wanted to be able to at least attempt to highlight respondents telling me what they thought I wanted to hear, or what they felt they should say. Conversely, I wanted to identify cases of respondents sticking to their own narratives, without regard to what they thought they should say (see final section of this chapter).

The above analysis relates to reflectivity being part of the interview method. It is also necessary to reflect on the choice of theoretical analysis and methodology. As Timmermans and Ido (2012) pointed out, researchers need to reflect on their attachment to certain strands of academic thinking, as well as personal biases, when they undertake research.

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We may see through gendered and racialized eyes, but we also see through the theoretical lenses of the training we went through, the theories we read, the political allegiances we may have fostered. (Timmermans & Ido 2012: p173).

From the earliest conceptualisation of the project, before I had chosen young and young adult carers as an example of young people in adult-type relational modes, I was motivated by a self-critical reflection on my own academically derived beliefs about young people. My moments of self-criticism are described in the Introduction to this thesis. They led me to conclude that the most community-motivated and rebellious young people may often be more knowledgeable and skilled at solving local problems than any available adults. My research for this thesis was based on my desire to see whether this statement could be supported by evidence.

I have not had any profound, direction-changing moments during my research for this thesis. However, I have found that, no matter how highly I estimate young and young adult carers’ knowledge and ability, and no matter how lowly I estimate the ability of society to recognise and reward such knowledge and ability, I nevertheless seem to underestimate the size of the gap. I had also wrongly assumed, before starting the project, that young and young adult carers' personal rebellions and social activism would be confined to small acts of reaction to the perceived tendency of society at large to not acknowledge their situation. However, I discovered that male young adult carers, in particular, had developed long-term plans to change society through use of the knowledge they had acquired as carers. Despite repeatedly realising that I tend to underestimate research participants, I suspect that I may be still continuing to do so. Subsequent chapters of this thesis should be seen merely as a reflection of the small amount of insight that I have gleaned. A whole layer of respondent activism may be missing from the accounts that I collected. For example, one respondent mentioned that social workers were ignoring the measures that the Labour Government had brought in to help disabled families. If I had been more sensitive to young and young adult carer activism, I could have prompted further, and found out whether he was a Labour party activist. 122

5.8: Research ethics The research protocol was approved by the University of Sunderland Ethics Committee (see Appendix 4). In this section, the ethical issues most relevant to the present research will be discussed in relation to the British Sociological Association guidelines (BSA 2015). The issues discussed are: anonymity prior to recruitment; informed consent; researcher sensitivity; the right to withdraw; confidentiality; datahandling; vulnerable respondents; feedback about research findings; professional integrity; and relations with, and responsibilities towards, research participants.

5.8.1: Anonymity prior to recruitment Young and young adult carers were contacted indirectly through organisations which asked their clients to fill in a form with their name and contact details if, and only if, they were interested in taking part in the research. Hence, the identities of young and young adult carers were only divulged to the researcher after potential participants had agreed that this could happen. Young carers’ workers’ first names were known to the researcher prior to recruitment. This information was obtained mostly through the university teaching team, of which the researcher was a member, as there would have been discussions about whether the researcher wanted a certain person to be contacted. The teaching team lecturers generally volunteered suggestions of people whom they thought would be interested, or would fit a certain key informant requirement, for example by being involved in the early history of the development of the young carers’ worker role.

5.8.2: Informed consent As most of the respondents were recruited through third party gatekeepers, there was a danger that organisations might put pressure on their service-users to participate. I specifically advised gatekeepers to take care to avoid giving respondents the impression that they were under pressure to participate, and asked them to draw attention to the statement about informed consent on the information sheet (see Appendix 3). As well as offering a full account of what participation 123

entailed and the use of the data in the information sheet, I discussed the research directly with potential participants before they finally agreed to be interviewed, and signed a consent form. I was careful to ensure that potential participants did not expect the research to have an immediate or direct effect on service provision. The researcher observed potential recruits carefully in order to check that they were happy to participate. All of the young and young adult carers whom I met in order to discuss their participation gave informed consent, signed an additional consent form, and completed the interview.

Apart from mentioning potential audiences, for example, trainee professionals whom I had as students, I did not raise any hopes that the study would directly benefit the respondents or anyone they knew. Any quotations which could be misinterpreted as evidence against the funding of young carers’ services were used with caution.

5.8.3: Researcher sensitivity An explanation of how I ensured that respondents were only asked questions that they were comfortable with is given in the ‘interview set-up’ section below. Where a topic was likely to be particularly sensitive, for example asking about an absent father, or a respondent showed signs of distress, I asked if the respondent minded me raising that topic, for instance through the question, 'Do you mind if I ask about your dad?. I took care to observe responses to such questions, and would not proceed unless I was sure that this person was not reluctant to continue.

5.8.4: The right to withdraw Respondents were informed that they were free to withdraw from the interview at any time. Had they seemed uncomfortable with the continuing to be interviewed, I would have asked them immediately if they wanted to stop the interview. However, as in other studies of marginalised young people (Youth Justice Board 2007), the emotions expressed were matter-of-factness about personal matters, and depersonalised anger about general attitudes. Respondents were more likely to react emotionally to mainstream attitudes towards young and young adult carers than to specific personal topics. Only one respondent showed any sign of finding the 124

interview process itself emotive. That person used the bottle of water that I gave all respondents as a stress ball while she talked, and felt comfortable in expressing her emotional difficulties, framing her distress by commenting, ‘This is really difficult to say but …’. In this case, I left the respondent to decide whether to continue, but was ready to steer her away from the topic if necessary.

5.8.5: Confidentiality Pseudonyms have been used throughout this thesis, and in published papers (Heyman, 2013; Heyman and Heyman, 2013), to conceal individual identities. Care was taken to ensure that respondents could not be recognised indirectly through contextual clues. For example, specific information about staff roles was excluded if only a small number of staff in the North-East were known to have a particular job title. The main risk to confidentiality for service-users was that those recruited through organisations could have their responses identified by the gatekeepers who had invited them to discuss participation in the research. I tried to avoid identifying individuals by blurring details such as exact course titles and places of study for those who were in education. Similarly, disabilities have been depicted in broad categories such as being acutely ill, and having a physical or learning disability.

5.8.6: Data handling Respondents were asked whether they were happy for me to record the interview and I explained what I would use the recording for. Recordings were destroyed after five years.

I informed respondents before and after the interview that their anonymised data would be used in reports and presentations for trainee social workers, and for professional and academic audiences. No other researchers were involved in processing either the tape-recordings, or any personal information held about respondents. Formal observation data were not collected, and, therefore, it was not necessary to obtain ongoing consent. Many informal conversations with professionals who were not direct participants contributed to the research 125

sensitisation process, and these professionals were also informed about the research outcomes.

The interview recordings were kept at home, on a password protected computer. Transcripts were stored anonymously by interview number with all real names, including those of third parties mentioned by the respondents, replaced by pseudonyms.

5.8.7: Respondent vulnerability Given the nature of the research design, ethics and methodology need to be discussed together, and this discussion is set out in the sections below. In general, the struggle to be ethical complemented the struggle to be methodologically rigorous. For example, there were challenges in getting full answers from the 16-18 year olds using the same schedule as was being used for the 18+ cohort (see final section of this chapter). Failure to do so would have resulted in less data being generated from one age group, undermining comparability. It might also have left 1618 year olds feeling that they had been unable to express themselves using their own frames of reference (Henwood & Pidgeon 1995). Respondents were given the option of being interviewed with a member of the gatekeeper organisation present, if they chose to be interviewed at the gatekeeper service. Two respondents opted to be interviewed with a non-specialist youth worker present.

Research participants aged 16-18 need to be considered particularly vulnerable because of the transition they are undergoing, at least in our culture, between childhood and adult status. Therefore, a procedure was developed and submitted to the ethics committee to protect all respondents at the level of a 16-18 year old (see Appendix 6). In the event that they disclosed some potential harm to themselves or others, or if the interview itself had triggered emotional problems, I would have advised the respondent that I needed to ensure they got appropriate help. I would then have tried to obtain the respondent’s consent to pass on information to the appropriate person. This would have been the gatekeeper organisation contact, unless that person was themselves implicated, in which case I would have consulted 126

academic colleagues who were qualified social workers. However, if a respondent had refused consent to pass the information on, I would have informed them that I had to seek appropriate help for them without their consent, but that I would keep them informed. Potential respondents were advised about this possibility before they gave informed consent to participate in the study. In practice, as already noted, I did not receive any information which gave rise to concern that a research participant might have been at risk.

5.8.8: Feedback about research findings Respondents were informed that they could request a copy of the research report, and comment on it if they so wished. One young carer respondent did so, and their views were taken into consideration in the subsequent analysis of the findings. In addition, all organisations involved in the study were automatically sent a copy of the report, and invited to comment. Two organisations became involved in ongoing discussions about the study, via their relationships with myself and the teaching team at the host University.

5.8.9: Professional integrity I was well-qualified and highly experienced, as I have an MSc in Social Research Methods, and had worked for five years in Research Associate and Senior Research Assistant roles. I have a strong commitment to representing the perspectives of research participants as honestly and accurately as I can.

5.8.10: Relations with, and responsibilities towards, research participants I was aware that professionals and service-users sometimes have needs that are in conflict, and I tried to be sensitive to such issues. For example, I was careful not to imply that either were ‘wrong’ when I compared and contrasted their views, presenting significant differences of perspective as important in themselves.

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5.9: Overview of Research Design This qualitative study was based primarily on semi-structured interviewing, with the schedule design and sampling containing elements of a grounded theory methodology (Corbin and Strauss 2014; Miller 2000). The research was designed to explore inter-generational mutuality with young and young adult carers and young carers’ workers. This exploration was to be related to wider societal approaches, particularly of gender and social class, in keeping with a grounded approach (Skeggs 1997; Bertaux 1981), as discussed above.

Data collection involved 13 interviews with young and young adult carers, and interviews with 10 staff members from six young carers’ services. Respondent characteristics are outlined in the next section below. The interviews were undertaken with two partly linked groups: young and young adult carers who might or might not have been receiving specialist support; and specialist young carers’ workers and managers who regularly engaged with young and young adult carers in the local authority areas that the carers lived in. Interviews with carers lasted from 25 minutes to an hour and a quarter, with an average of 45 minutes. Interviews with staff lasted for about an hour in each case. Design, data collection and analysis were carried out in cycles, in order to ensure that the study was grounded in research participants own concerns. Data analysis involved overlapping stages of open, axial and selective coding (Strauss & Corbin, 2014; Corbin & Strauss, 1990), discussed further below.

5.10: Researcher sensitisation The research drew upon important elements of researcher sensitisation, which occurred mainly as an unintended consequence of asking respondents to opt for a place to be interviewed at that would be convenient to them. This process provides a good example of the ‘serendipity’ associated with grounded approaches to research methodology. Through observation in these social contexts, I was able to sensitise myself first-hand to the home-based caring environments of three respondents. In addition, I had fairly long general conversations with the cared-for people living in two of these homes about themselves and their family. I also talked with a family 128

friend involved in supervising the young people's household tasks during their mother’s frequent hospital visits. I visited one local youth project which a further three of the respondents attended on an almost daily basis, and a café that another respondent used as a regular meeting place. Finally, I was able to sensitise myself first-hand to the working environments of all but one of the staff whom I interviewed. It is difficult to say how much this sensitisation affected my findings, because the interviews would have been different had I not been in these settings. The settings outlined above provided the equivalent of a third person in the room helping to tell the story. For example, in response to a question about how people behaved towards her when she was out with the cared-for person, one respondent pointed towards where her mother was sitting, and said:

You look at me mam now. She looks perfectly normal, until she starts to walk. There’s nothing wrong with her talking. (Lucy, 19, cares for physically disabled mother and sister).

In this instance, the decision to ask me to look as well as listen was entirely the respondent’s. The staff whom I interviewed often showed me reports that they had compiled, and publicity materials, in order to highlight their joint working arrangements. In another case, I was able to see that a respondent was probably correct in her assessment that her older non-co-resident siblings were not as helpful as they claimed to be, when the respondents’ mother pointed out of the window at some junk in the backyard that those siblings were supposed to have already moved. The sheer quantity of the junk, and the number of problems that it was causing, would have been hard for a 16 year old respondent to describe in a conventional interview setting. Moreover, because the mother had been present when the siblings promised to move the junk, and the respondent had not, the mother’s account was first-hand and clearer. The decision to show me the junk had been the mother's, not the respondent's.

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5.11: Changes to the interview schedule between rounds of interviewing and analysis Miller (2000: p18) has argued that realist biographical researchers are also producers of grounded theory, because of the adaptations to the method and analysis that occur between the collection of each biography, as a result of the researcher’s iterative build-up of knowledge. Miller stated that, in order to carry out inductive biographical research to the point of saturation (Bertaux 1981), the researcher has to be willing to adapt their tools in later rounds of interviewing, in response to emerging findings from earlier ones. It can be argued that biographical realists do not become grounded theorists simply because they adapt their schedules. An alternative term to describe the general phenomenon of adapting methods during the research in response to findings is a ‘grounded approach’ (Holt, 1997: p329). I have used this term rather than ‘grounded theory’ to relate my methodology to biographical realism, whilst recognising that such distinctions are somewhat arbitrary, particularly given the flexibility of the specification of grounded theory as advocated by proponents such as Strauss and Corbin (Corbin & Strauss 2014; Strauss & Corbin 1990). As argued by Corbin and Strauss (2014), even a fully grounded theory methodology should not, and indeed cannot, start from a completely open position. There were questions which I wanted to ask from the outset, and themes from previous literature that I wanted to explore. There were gaps in the research literature which I hoped to fill, primarily about how much being a young adult, and going through typical young adult experiences such as leaving school, had interacted with the caring role. It was, therefore, imperative that the interview schedule should enable me to explore these quite complex themes with respondents from the outset. Moreover, I was reluctant to change the focus of my research question in response to respondents’ narratives. My research did not offer an open-ended opportunity for young and young adult carers to talk in any way they chose about being carers. Instead, the issue of being a young or young adult carer was chosen as an example of a broader category of young people with responsibilities considered adult in Western cultures. My aim was to explore relationships between these young people and older generations, as discussed in the Introduction. Having a clear purpose for starting the enquiry is not in 130

any way incompatible with the principles of grounded theory advocated by Corbin and Strauss (2014).

In terms of numbers, my primary research consisted of interviews with 13 young and young adult carers, of whom three were aged under 18, and 10 members of staff. I began with four ‘first round’ loosely structured in-depth interviews with three members of staff, one individual and one joint interview, from two local authority areas; and with one young adult carer, aged 21, and one former young carer, aged over 25. There were only six questions in each of the two schedules, and only the first four questions could be answered in a closed-ended manner (see Appendix 2). These questions were: How many people are there in your household? Who are they? Who is disabled? What is the disability called?. The interview schedule was made more specific following this experience. Questions were added, for example, ‘What have you learned from being a carer?’ Existing questions were either narrowed down, or broadened, in order to better address emerging themes from previous rounds. In ‘round two’, both of the staff interviews were followed up by more in-depth interviews; and two more young adult carers were interviewed, using the amended schedule. Interviews were also completed with a service manager who had been involved in the early stages of developing services for young carers, and with a current young carers’ social worker. The question schedules were further tightened up for ‘round three’, in which three more carers were interviewed (see Appendix 2). I then proceeded directly to ‘round four’ with no further changes to the schedule other than starting to use it in a more structured way, with more focus on giving equal amounts of time to each topic. This consolidation stage involved interviews with five more young and young adult carers, bringing the total to 13, and with two more young carers’ workers, bringing the total to 10. At this stage, I judged that data saturation had been achieved. Responses to questions had become more predictable, with clear patterns of mutuality, conflict and deference emerging.

To give an example of a major addition to the schedule, the later rounds of interviewing included separate questions about what respondents had learned from 131

being a carer. The original question schedule had contained prompts to see if respondents were learning practical skills through experiences of being a family carer (Lynch 2005). It became apparent that respondents had an almost unlimited supply of anecdotes about how they had learned, and had been changed as a person, by their experiences of caring. Later schedules were therefore designed to look at such learning in depth, in terms of values, and feelings about the world, as well as the acquisition of practical knowledge.

Because the schedule was modified so frequently, it would almost impossible to present all the changes in tabular form. However, some illustrative examples are presented in Table 5.1, below.

Table 5.1: Illustrative examples of ongoing change made to the interview schedule Question in earliest version of the schedule What sort of care tasks were you doing between the ages of 16 and 21? And what did you learn from that? Did you ask anyone outside the family to talk about the fact that you were carrying out these tasks?

Did your school have an approach to the careers advice needs of young carers?

Question in later rounds of data collection What have you learnt overall through being a carer? Have you had any contact with social service. If so, did they talk to you about your caring role? What did they say? What type of conversation did you have with the cared-for person about beginning your caring role. How well did your school support you with issues related to the caring role?

5.12: The sample Carers were mostly contacted via carer and disability organisations that were known to members of the social work teaching team I was associated with, and from other local organisations, for example a social enterprise firm and a youth drop-in centre. Personal contacts also enabled me to connect to other people whom I could interview. However, I avoided interviewing young or young adult carers whom I knew directly. As noted in the section on Ethics, I had to be cautious in the selection of quotations in order to prevent these contacts being able to recognise the responses of research participants they had approached on my behalf. 132

One of the most productive sources of personal contacts proved to be public seminars, where I gave presentations of my preliminary results from the first four interviews. These sessions were attended by people who were interested in both young and young adult carers and social research, and were therefore likely to both have contacts, and be interested in helping a researcher to access them. At the time, I did not worry about selection bias, as I trusted, and still trust, that these gatekeepers would understand the need to representatively sample young and young adult carers. However, I have subsequently realised that the organisations which were most interested in taking part in research often had had issues in working with other organisations. In consequence, there might have been selection bias at this level, rather than at that of individual service-users. This may have created sampling bias towards carers whose only positive experience was of the service they were referred through, since the services that lacked effective partnerships were likely to have been the ones where such grievances were held (Heyman 2013).

The public seminars brought in five respondents who were notably less aware of carers’ services than those that had been identified through social work and young carers’ centre contacts. One of the five was a young adult carer in the 20+ range who had opted to attend my presentation himself, having seen the poster at his university. He approached me following the presentation, and asked if I needed more people, including himself and others of his acquaintance, for interview. Another three carers were recruited via a youth worker who had also found out about my presentation through general publicity, and had known little about young and young adult carers prior to finding herself working with a number of them. She also approached me herself, and offered to contact three of her service-users on my behalf. Having seen my presentation and the subsequent audience-led discussion, I felt that these seminar attendees understood, and felt a genuine enthusiasm for, the study. Moreover, I saw evidence among subsequent respondents whom the professionals attending the seminar contacted on my behalf that they had been able to convey a fuller representation of what the study was about than was evident among practitioner respondents whom I had merely interviewed. On reflection, I 133

should have written up a report of the presentation session to give to subsequent practitioner contacts, so that they could have shared the same experience as the practitioners who had attended the seminars.

Three other approaches to sampling which were attempted proved unsuccessful. Firstly, I contacted a health centre that was running a carers' week. The manager responded positively, but did not identify any potential respondents. Secondly, I approached a further education college. A contact person from that institution did give out information sheets to students but reported no response, partly because nearly all of her student cohort were aged over 25. Finally, a regional youth work contact to try and contact other youth workers. He suggested sending out a postal questionnaire to get practitioners interested. However, I did not think that this approach would contribute much to the achievement of the study aims, which required in-depth exploration of complex issues. In addition, I could have approached young adult carers from the many students with caring responsibilities whom I taught at the University. However, I ruled this out because I considered that the dual role would have created ethical and methodological problems.

Table 5.2, below, presents some relevant background information about the sample. It has been made non-specific, as including too much detail at the individual level would have risk losing anonymity in some cases.

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Table 5.2: The sample of young and young adult carers (N=13) and young carers’ workers (N=10) Pseudonym Pauline Pete Lucy

Age at time of interview 29 21 19

Paul Joanne Jack John Tom Lauren James Daniel Ryan Gemma Kate Trish Linda Jim Pam Anthony Clem Sarah Tina Tony

16 16 18 23 20 24 21 23 25 16 Early career Mid career Late career Late career Mid career Mid career Mid career Mid career Late career Early career

Role Cares for learning disabled mother Cares for physically disabled father and sister Cares for physically disabled mother and sister Cares for physically disabled father Cares for acutely ill mother Cares for chronically ill grandmother Cares for chronically ill grandmother Cares for learning disabled brother Cares for physically disabled brother Cares for physically disabled mother Cares for chronically ill mother Cares for acutely ill grandmother Cares for physically disabled mother Young carers’ project worker Young carers’ specialist worker Young carers’ project manager Young carers’ project manager Young carers’ project worker Young carers’ project worker Young carers’ project worker Young carers’ project worker Young carers’ project manager Young carers’ project worker

All but one of the carers had been co-resident with the cared-for person at the time of most intense caring responsibilities. Those who were no longer co-resident at the time of the interview continued to have a caring role of some kind, apart from one respondent who had been bereaved of the cared-for person. Although most families had had work in the past, all but one family were now headed by workless householders, and most had experienced poverty.

A demographic profile of the sample of young and young adult carers is provided in Table 5.3 below.

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Table 5.3: Demographic profile of the young and young adult carer sample (N=13) Gender Age Carer age when cared-for person became incapacitated+ Caring role within household

Male = 8 16 -19 = 5 0-10 = 4

Female = 5 20-21 = 3 11-15 = 4

Lone carer within household = 7*

Caring for which relations Primary disability/illness*** Main source of professional support in relation to caring role Work/education status (at time of interview) Deprived community (based on index multiple deprivation)? Contacted for interview via Family involvement with local authority

Social worker for Educational young or young welfare = 1 adult carer (prior to caring role) = 2

22-24 = 3 16+ = 5

25-30 = 2

Main carer for at least one person =1

Secondary carer =3

Grandmother = 3

Parent = 6

Sibling = 2

Other (e.g. advocate for disabled relative) = 2** Both parent and sibling = 2

Learning disability = 4

Acute illness = 2

Young carers’ workers = 5

Long term physical disability =8 Youth workers = 2

Social workers = 1

None = 5

Employed full time = 2

Employed part time = 1

In education or training = 6 (plus two enrolled)

NEET/full time caring = 2

Yes = 7

No = 6

Young carers’ project = 4

Youth project = 3

Educational institution/ event =5 Social worker for cared-for person and carers = 7

Social enterprise = 1

*Two of these were daughters visiting almost daily from close by **Of these one had formerly been the main family carer within the household and the other had formerly had a major secondary caring role ***Totals 14 as two people were caring for both a parent and a sibling. + Incapacitated to the point of needing a carer. Many cared-for parents had had preexisting conditions that had not incapacitated them until later in their child’s life. One carer is counted in the 0-10 age group for a disabled sibling, but mostly cared for a parent with a late-onset disability.

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The make-up of the overall sample of young carers’ workers is summarised in Table 5.4, below. Table 5.4: Make-up of the sample of young carers’ workers (N=10) Job Gender Years of experience with young and young adult carers at time of interview

Young carers’ project worker = 7 Male = 4 Over 10 = 2

Young carers’ specialist worker = 1 Female = 6 5-10 = 7

Project manager = 3 Under 5 = 1

The sampling methodology corresponded most closely to the biographical approach of Bertaux (1981). Young and young adult carers were purposively chosen for their experiences of different levels of involvement from the state. Also, as Bertaux did, the sampling strategy was kept flexible. This approach allowed themes to be given extra exploration through interviewing additional people, selected in terms of their potential relevance in relation to the emergent analysis. An iterative approach to choosing research participants is also central to theoretical sampling in grounded theory methodology (Corbin & Strauss 2014).

For example, the initial intention had been for the sample to include a high proportion of women, in order to reflect the greater number of female carers in the UK population. However, from the first two rounds of interviews, gender seemed to pale in significance compared to other factors. The carers recruited in these round were all either the only able-bodied, or the youngest ablebodied, child in a family. It therefore was unlikely that girls in this position had been chosen because of gender. Existing research by Olsen and Clarke (2003) had also found the gender of the young or young adult carer to be a relatively insignificant factor in their taking-up a caring role. I, therefore, ceased to consider gender important until I came towards the end of my research, when I began to see differences between the narratives of young

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men and young women. This made me decide to interview at least one more young woman in order to further explore these differences.

5.13: The interview process 5.13.1: The interview set-up Respondents were told, via the information sheet (see Appendix 7), that they could choose a convenient place of their choice for the interview, but their choices were constricted by their ability to travel. Had I offered to pick them up and take them elsewhere in my car or in a taxi, I feel that some would have taken up the offer. However, I did not present this option, so they chose the place that was easiest for them to get to independently. In consequence, they were nearly all interviewed locally, or in the course of their day-to-day business. This was arguably more to the advantage of the researcher than the participants, because it gave me opportunities for me to sensitise myself to issues in the respondent’s life that would be difficult or uncomfortable for respondents to portray in a narrative (Crogham et al. 2008), as discussed above. I interviewed three carers and two professionals in my own university office, and another carer in my own home. They seemed to get more enjoyment out of the interview process than people who were interviewed at their home, local youth project or place of work.

All of the respondents seemed happy to have helped with the research, and to have met me. Some carers commented on how much they had enjoyed talking about their caring roles, which they rarely got opportunities to do. At the same time, many respondents seemed ill-at-ease in their routine locations, even though we were talking in private, with no-one else in the room. In one case, the respondent insisted that we should talk in the living room with her mother present. On reflection, I would have liked to have had a budget which would have allowed me to offer respondents the option of coming into the university by taxi if they preferred. I could then have considered following such interviews up with visits for the sake of observation, and meeting the family if the respondent at was happy for me to do so. 138

Most interviewees were contacted via an organisation, and most opted to be interviewed in a private room within that organisation’s base. Three respondents were interviewed in a youth centre setting, and three in the university in which they were, or had been, students. Another respondent, identified through an educational institution, was interviewed in a quiet corner of a café in a central location, and a social enterprise volunteer was interviewed in the setting where he was a volunteer. Three of the four respondents who were contacted through a young carers’ project found it more convenient to be interviewed at home. All lived some distance from their young carers’ project, which was often accessible to them only because the organisation was able to arrange lifts. The fourth of these respondents opted to be interviewed in a quiet corner of a café near his educational institution. The peer-referred respondent was interviewed over the phone, with the interview, nevertheless, lasting over an hour.

I undertook the research aware that qualitative researchers must not assume that their work is non-exploitative simply because it uses the interviewee’s own frames of reference (Henwood & Pidgeon 1995). However, my biggest concern has been about whether I treated time-pressured respondents differently to those who were less rushed, and, thereby, gave the former less opportunity to produce their narrative freely. It also concerns me that respondents who were interviewed in their day-to-day locations due to time pressures made passing reference to those locations and the people in them, in a manner which suggested to me that they felt constricted by being in the surroundings that they were referring to. Perhaps one exception was a 16 year old respondent who seemed to enjoy showing me the equipment for the hobbies that we had been discussing.

In contrast, I saw no evidence that people who were interviewed away from their day-to-day environments felt any need for the interviewer to have seen some aspects of their 'world' for themselves, in order to supplement their narrative about their own lives and life choices. The sensitisation that I was afforded by the home environments was useful, but not to the point that the 139

lesser degree of comfort experienced by some of these respondents could be justified in future studies. My impression was that respondents seemed to enjoy the chance to discuss familiar aspects of their everyday lives in a fresh environment. Finch (cited by Henwood & Pidgeon 1995) argued that it is ethically preferable that the respondent explain their 'world' in their own words. However, it may be that the people who were interviewed at home would not have consented to the inconvenience of being interviewed anywhere else, in which case the use of their homes was justified by the need to make sure that research included the busiest carers.

5.13.2: The interview experience Overall, respondents appeared to enjoy having an opportunity to talk in depth, as some said afterwards, and to be pleased that their experiences were contributing to a research project. For example, they complemented me on the thoroughness of the schedule, asked me how many other people I had interviewed from their service, if applicable; and, in one case, asked for an update on my findings.

As argued by Henwood and Pidgeon (1995), using supposed similarities between interviewer and interviewee to draw out more honest interviewee accounts can be exploitative, unless one is a genuine insider (Oakley 2005). I felt that I was not an insider to young and young adult carers, but that I was, to some extent, an insider to professional interviewees and gatekeepers. Despite having closely experienced many environments where care of a sick or disabled person is taking place, I have never acted in this role myself. I sensed that respondents were assuming me to be of typical PhD student age, i.e. in my mid-20s, and therefore more of an insider in the generational sense than I actually was. I was in fact 15 years older than the youngest research participants, who were aged only 16. The circumstances of young people living in the UK have changed rapidly since the banking Great Crash of 2008. Five years may not seem much in historical terms, until one considers that, for instance, the 16 year old interviewed in 2010 would have had to pay fees of

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up to £9000 a year if she had wanted to go to university at age 18, whereas the age cohort I belonged to paid no fees whatsoever.

It can be similarly exploitative to pretend that service-users are as wellequipped as professional interviewees to use and critique definitions. Only one young adult carer actually critiqued the term ‘carer’ on hearing me use it, but other young or young adult carers might have wanted to and not felt able to. This is an ethical concern as well as a methodological one.

I found that I was able to identify with some respondents more than others. I was able to key into why these respondents were interested in my research, and to prompt them more easily. One respondent, in particular, proved difficult for me to relate to because she was a committed consumerist, and I am an environmentalist. However, she was so talkative, and so keen to help me by prompting me to ask her my questions, that the interview was still successful. The experience of carrying out that interview made me aware that researcher bias can result from the inability to think of a prompt in relation to unfamiliar narrative frameworks. I did impose a biographical structure on respondents’ narratives, which could be seen as an exploitative attempt to make sure that the data were usable within the scope of the project. Even when they were talking about very general feelings and unchanging aspects of the situation, I prompted young and young adult carer respondents to come back to a narrative about different life stages and arenas of life. For example, I would follow with questions about other biographical periods, such as when they were in a Further Education College. Moreover, I encouraged respondents to compare and contrast, by prompting and probing more when they talked about differences, and less when they talked about similarities. For instance, one respondent felt that school and university were similar in their approach to dealing with students’ personal problems, whereas FE colleges stood out as different. In response, I encouraged this person to talk more about the FE college.

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However, I took precautions to protect research participants from feeling exploited through me imposing my agenda. If a respondent showed signs of finding a particular prompt confusing or odd, I did not prompt further. Even if they seemed quite comfortable in giving a firm ‘no’ to the suggestion contained in my prompt, I generally refrained from trying a weaker or alternative version of the prompt, as illustrated by the following example.

Interviewer: Do you and your mam have conversations about who's going to do what, or does your mam just have conversations with your nana? Respondent: It just happens. We don't really have conversations like that. Interviewer: Does she get the shopping every week, your mam (referring back to respondent’s previous statement)?

I tried to balance definite prompts with neutral probes, and to encourage respondents into a pattern of telling their story which did not require me to prompt at all. I felt that respondents were most comfortable where my contributions were based on reiteration of their prior statements.

I assured young and young adult carer participants via the information sheet, and during the interview, that the purpose of the research was to frame the accounts around what they wanted to say. Where the person apologised for going off on a tangent, I stated that there were no irrelevant topics as long as we were talking about them and their caring. As a result of having experienced so many respondents saying that they felt like they had strayed from the focus of the interview, I made a point of saying at the beginning of the later rounds of interviews, ‘When you’re trying to explain things, whatever you want to say, don’t feel that you’re going off on a tangent – it’s all about you’.

Worrying about straying off-topic did not occur so much in staff interviews, as I was looking to get them to talk about their experiences of young carer work, rather than their identities as workers. I took ethical and methodological risks 142

with staff that I would not have taken with carers. With the former, I occasionally referred to my own personal and work-based experiences, and also brought in more positions from the literature. I felt that this risk was justified, given that staff were generally being interviewed on work time and were therefore representing their organisations as well as themselves.

5.13.3: The interview process The interview process was based on using interview schedules flexibly. Respondents were asked the same introductory questions, which gave them an idea of where the interviewer wanted to go with their narrative. They were taken through the schedule in different orders, depending on where their narratives naturally flowed. However, I ensured that every respondent eventually covered all of the areas of life and life stages that I was interested in.

As mentioned in the Introduction, the interview schedules followed the principle laid out by Wengraf (2001), that interview respondents should never be presented with the underlying research questions through direct questions. They already knew the research question through the information sheet, and I did not refer to it beyond this. I checked their understanding of the research aims prior to the beginning of the interview, before explaining that I was going to start by asking about disability, and ‘who does what’ in their household. Wengraf’s point was that interviewees should be left to expand into opinions on their own accord, which the interviewer can then probe. The aim is to avoid asking for opinions on issues which may have little importance to the respondent personally, and which the researcher has merely guessed may have indirect significance within their biography. I often followed up factual questions with prompts inviting respondents to share opinions, for example by asking them about what they saw as the cause of others’ unhelpful behaviour.

As a critical realist, I was interested in both 'grassroots' opinions that the respondents might have discussed only within their closest circles, or with noone, and with more rhetorical views. The latter might have been picked up on 143

care work courses, or from professionals working with the young person, and taken on by them as a tool for accessing services (Skeggs 1997). For example, 11 of the young and young adult carers had been identified through being known as a carer to a contact person from within an organisation. This staff member must have known enough about their caring role to decide that they could take part in the research. It is likely that these young and young adult carers had been through some kind of conversation about caring with a professional, which might have affected how they defined themselves as a carer. Some carers even described such conversations to me.

All stated that they had had periods in their lives when they had not talked to anyone about their caring role, including family members. However, in all 13 cases in which this had happened, those periods had now passed, with everyone having at least one friend whom they could occasionally talk to. These professionals and friends would have themselves been influenced by ideas from elsewhere. The professionals, in particular, would have operated under the inevitable influence of policy rhetoric in their area, which might have been youth or young carers’ work or teaching. Some of that rhetoric could have been passed on to young people in a form that might have influenced their narratives about themselves. Young and young adult carers may deliberately seek out professional terminology that can help them to assert themselves with professionals (Olsen & Clark 2003).

One carer spoke of holding a difference of opinion on one particular issue with the professional who had put me in contact with them. However, all seemed to be in agreement with the overall ethos of the organisation for young carers that they were engaged with, and would often borrow organisational terminology. Most reported that they felt that they had got a great deal out of the organisation that had put them in touch with me. This was in stark contrast to the tense relationships that they described with other organisations which they had come into contact with. On the basis of informal conversations about the research process with both carers and professionals, it appears likely that the five respondents who were presented with information sheets by their young carers’ workers discussed what they might say in the interview with 144

those workers. This allowed for answers to be based on a good understanding of what the research was about, but it may have increased the likelihood that I would not hear any direct complaints that the respondent did have about the contact organisation.

As each interview went on, carers seemed to grow in confidence and become more likely to present the organisation-backed or family-backed view that they had come in with, as opposed to answers to the questions about social structures which the research was designed to explore. Because the social structure questions sometimes made respondents uneasy, I often had to drop such lines of enquiry for practical and ethical reasons. Carers often gave more formal answers towards the end of the interview when I had moved from general questions about them and their families to specific questions about whether disability support had been adequate. For example, Daniel spoke for his whole poorly-served family, and other families in an even worse position, when asked about his own emotional support needs. No social worker, or anyone else, has come up to me and gone, ‘Do you need any support?’ … Like I said, my mum and my brother have just made a lot of phone calls to try and get stuff done. I do actually believe that you could be in a situation where you're just left at home, really ill, with almost no support and no care at all. (Daniel, aged 23, cares for chronically ill mother).

This turning of a question about the respondent as an individual into a narrative about other people occurred in the middle part of most carer interviews. Those referred to included younger carers whom the respondent helped as a volunteer, family members, and friends who were also young or young adult carers. This shift of focus may reflect a desire to present oneself as a member of a social network, whose personal decisions always take into account the welfare of one’s whole social group (Gilligan 1982). It could be seen as a mild moment of resistance to the individualistic orientation that is inevitably implied, albeit unintentionally, by biographical interview questions such as, ‘Where do see yourself in five years time?’ However, it is important 145

to ask people about the impact of social structures on them as individuals, and to glean as much as possible from their often hesitant responses. If they feel confident enough, they can redirect their focus later in the interview to their own more collective systems of reference (Henwood and Pidgeon,1995). Such shifts provide a useful source of evidence about collective, antiindividualist attitudes.

Young carers’ workers were interviewed as representatives of their organisations. They would, inevitably, have engaged with, and positioned themselves in relation to, policy and practice narratives in order to acquire their jobs and undertake training. These pre-constructed narratives should be distinguished from self-generated narratives that may derive from professional respondents’ more informal associations.

As always in interview-based research, the honesty of respondents needs to be considered. Comparing and contrasting the worker and carer responses provides some evidence of honest helpfulness towards the research from the beginning of the carer interviews. It would appear that staff responses at the start of the interview were based on official narratives. They described services in the language of organisational strategy documents. However, a different type of narrative appeared later in the interviews. For example, Kate started off with the type of language that could have come straight from a strategy meeting presentation.

We developed a specific partnership working agreement with the young carers’ social worker, so Social Services, and the Young Carers Connexions Advisor, so we had an actual three-way written down partnership, that we would share information and be able to have a three pronged approach to supporting individuals. (Kate, young carers’ worker, Area W).

However, by the end of her follow-up interview she was discussing difficulties in her work with this partnership.

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I kind of got sad when I was with kids who were on the register, because it came to the point where I had to share that stuff. I couldn't I wasn't legally allowed to - keep things like that to meself. And, obviously, you tell that to the young person. But once they register that you have to start doing that, it has a knock on effect on your relationship with the young person. So you end up in this awful position where they won't share information because they can't without everybody knowing. (Kate, young carers’ worker, Area W).

Her pre-constructed answer had come earlier in the interview, whilst her more informal response came later. This suggests that the interview format for the professionals achieved its purpose, which was to reveal through conversation a genuinely front-line view of services. However, four practitioners were interviewed in two pairs from the same two services, and this could have made it more difficult for them to break away from the service’s official view.

5.14: Reflections on the study methodology In summary, pre-construction can be identified in the respondent narratives. It became particularly apparent when respondents discussed their sources of advice and guidance. Connections could be seen between their own ideas and those of the young carer organisation with which they had engaged. Responses, usually expressed more emotionally, which opposed the official line, might involve real moments of resistance to ideology. Alternatively, they might be considered as no more than steps towards a different self-regulating form of oppression, in the manner described by Gray (2011), when he characterised resilience as a neoliberal trap to make carers take even more on to themselves.

It would have been interesting to see what young and young adult carers would have said if I had asked them to summarise their experiences of being a carer in a fixed number of words. I also consider, on reflection, that I would have liked to have had more pre-prepared prompts in the schedule for encouraging people to expand on their feelings, regardless of whether those 147

feelings appeared associated with any biographical events. Had I done so, I might have stimulated longer interviews with two of the 16 year olds, who were the only respondents to give interviews of less than half an hour. For example, when one 16 year old respondent stated that she did not need extra help from social services because she was ‘happy as I am’, I could have asked her about what made her feel that way. This question might have elicited a meaningful response, which would have been useful for understanding her overall narrative. As it stood, only one 16 year old respondent gave a lengthy interview. It is possible that the reason that she was able to do this, within the constraints of biographical interview questions, was that much of her narrative was made up of descriptions of angry exchanges with peers, family members and teachers.

However, despite the occasional missed opportunity to get full responses, perhaps due to my being overly determined to keep the interviews strictly biographical, I would claim that the biographical approach I adopted avoided some of the pitfalls of other research into the perspectives of young and young adult carers. In this other research, there has sometimes been a failure to distinguish researcher and respondent judgements about whether circumstances are as they ‘should’ be from events in young and young adult carers’ lives. This has meant that there can be oo much emphasis on how such judgements are constructed, as with O’Dell et al. (2010). There can also be a failure to recognise concepts like ‘role reversal’ as themselves social constructions, as with Tarapdar (2007). The value of being able to distinguish descriptions of experienced life-events from constructed accounts, however tentatively, may outweigh the occasional loss of information from the small number of less confident respondents who might have responded better to questions about their opinions.

5.15: Methods of analysis A modified grounded theory approach to data analysis (Corbin & Strauss 2014; Strauss & Corbin 1990), in combination with elements of a narrative approach, was adopted. I initially used QSR NVIVO to explore the interview 148

data, looking for patterns which confirmed or contradicted the findings of existing literature. Data analysis was undertaken in three overlapping stages of open, axial and selective coding (Corbin & Strauss 2014), illustrated in Table 5.5, below. Open coding involves cutting up data, and locating it in multiple thematic categories. Axial coding is concerned with identifying properties of categories such as intra-category differences; with relationships to other categories; and with relevant contextual conditions, such as the carer’s age, gender and socioeconomic status. At the selective coding stage, the data are linked together around a chosen core category, which is foregrounded, and around which a substantive theory is developed.

Serendipity (Miller 2000) is crucial to the preliminary open stage of attempting to discover theory. QSR NVIVO enabled me to draw together data which related to particular themes. At the stage of open coding, I was able to draw together items of interview data which related to emergent themes, for example, concerning interventions perceived to be supportive and unsupportive. Open coding developed naturally into axial coding through comparisons of data items. For instance, I was able to compare respondent comments concerning the roles of their female relatives in order to probe differences in assumptions about gender. The analysis was concerned both with descriptions of events and with accounts of emotions. The two were often bound up inextricably, for example, when respondents depicted heated conversations with professionals, family members and other students.

5.15.1: Examples of data coding Extracts from a sample interview transcript is provided in Appendix 5. Table 5.5, below, provides a few representative examples to illustrate how interview transcripts were cut up into data items which were sorted into thematic categories via open coding. The data are then used to illustrate axial coding through analysis of intra-category variations, relationships between categories, and links to a wide variety of contextual factors. Selective coding around a foregrounded core category is then outlined.

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Table 5.5: Examples of open and axial coding Quotation

Theme 1

Theme 2

Theme 3

Interviewer: And what kind of disability does your mam have? Young carer: Do you want the list? She's like got problems with her heart. She's got problems with her back. She's got gout. And she's got depression and stuff. And she has to be in a wheelchair when she goes out, because of her back and her chest. It's like she can walk to the toilet and it’s like she's run the marathon.

Relentlessness of care demands

Multiple health problems

Disability

Young adult carer: [After an ear operation], I was in a ward with all these little kids. I was only little myself … I was sitting on the bed, and my mam was standing up when she could. And she went, ‘I feel funny’. I had a bandage half off me head. I said, ‘Mam lie down’ … I said, ‘Just give her some air. She’ll be fine’. They said, ‘We’re going to have to send your mum to casualty’, I said, ‘Oh just leave me!’

Relentlessness of care demands

Carer’s Carer selfown needs assertion

Young adult carer: [Caring] makes the day pass by. Nothing else really to do, when you haven't got a job or anything. Interviewer: is your nanna pleased that you're going to start college soon. Young adult carer: Aye, it keeps me out of her way!

Relentlessness of care demands

Carer’s Distancing own needs

Although a data item could be coded into any number of categories, a maximum of three themes are shown in the above table. The interview extracts have been chosen to illustrate axial coding of the thematic category ‘relentlessness of care demands’. The first two quotations convey a sense of the cared-for person having needs requiring 24/7 care. However, the context is quite different in the two cases. In the first example, high demand was 150

related to the multiple health problems and disabilities experienced by the respondent’s mother. In the second case, the respondent was illustrating her perception that her mother’s behaviour, and the response of others to it, took centre stage even when the speaker, her daughter, had been a small child being treated in hospital. The third example, in contrast, illustrates relatively low demand for caring which could easily be terminated when the respondent was ready to move on. This difference can be related to the milder degree of disability experienced by the cared-for person in the third example, together with a relatively distant relationship between grandmother and grandson, conveyed by the jocular tone in which the latter suggested that the former didn’t want to see too much of him.

Axial coding allowed themes and their relationships to be explored in some depth. Selective coding involves foregrounding a single category which becomes the primary focus of analysis in relation to other categories and contextual conditions. The category is chosen because it relates, as far as the data allow, to the initial research focus, in this case intergenerational mutuality; and because it allows rich and wide-ranging connections to be made with the rest of the data. The selected category must be well-grounded in the concerns of research participants, but is not assumed to be the only one which could have been chosen. Analysis centred on the core category allows a narrative to be constructed about a problematic issue which is of concern to research participants. However, exceptions which do not fit with this narrative are not dismissed as ‘errors’, but given particular attention in order to enrich the overall analysis.

The core category selected in relation to the present study was the normalisation versus the pathologisation of young and young adult carers in response to them not fitting the currently standard template for transition to young adulthood. These interpretive frameworks were variously applied to the personalities, family functioning and developmental progress of young and young adult carers. The starting point for analysis was the observation that young and young adult carers constructed mostly positive accounts of their family life, regardless of whether children were being forced to assert 151

themselves with adults, as illustrated by the following quotation, discussed in Chapter 7: Findings from Interviews with Young and Young Adult Carers.

My brother, we were brought up the same, only he left home when he was 16, which was the only difference between us. And he's still very shy and reserved, and me I've been nice, bright, bubbly, and [the young carers’ project] gave me that much extra [confidence] to speak my mind. (Pete, 21, cares for physically disabled father). Young and young adult carers’ concerns mainly involved issues arising from the inability or failure of others outside their family to accommodate to their circumstances. For instance, they were concerned about schools and colleges which would not grant the flexibility which they needed in order to integrate home with educational requirements, and with peers who could not relate to their experiences of caring. In contrast, young carers’ workers pathologised the family conditions of young and young adult carers if they detected indications that this person’s transition to successful adulthood was going to be delayed by family circumstances. Moreover, the workers’ concerns were not confined to those young and young adult carers who were delaying transition to adulthood in order to meet the objective care needs of a family member. Their concern was at its highest when they felt that a young or young adult carer was meeting imagined or dishonestly claimed care needs. The following quotation, discussed in Chapter 6: Findings from Interviews with Young Carer Workers, provides a particularly strong example of the way in which a service-provider could view the family circumstances of male young and young adult carers, in particular, as potentially exploitative.

I know more than one [family, where] it's been mums with older sons, who probably could do a lot more for themselves, but kind of enjoy being looked after by their child … I saw [one cared-for mother] riding her bike, so is there any real need for her son to put her in the bath? And where is that on the child protection scale? (Kate, young carers’ worker, Town X). 152

Both the young and young adult carer and the young carers’ worker interviewees offered nuanced and conditional analyses of the potential for family life to be pathologised by reliance the former. Young carers’ workers offered generally negative stories about the behaviour of non-specialist professionals, such as teachers and social workers, whom they felt rarely accommodated to the circumstances of young and young adult carers. These second-hand accounts cannot be compared directly with the interview material produced directly by young carers’ workers. However, comparisons within young and young adult carer interviews showed that they considered young carers’ workers to be much more likely than non-specialists to support them, rather than to pathologise non-compliance with external standards such as those governing college attendance.

Other themes could then be related to the foregrounded core category of the pathologisation versus normalisation of being a young or young adult carer. For example, some respondents mapped the presence of problems onto carer gender, but in different ways.

I would say a lot of the young females have got very different and clear routes mapped out in their minds. More so than the young males that we’ve worked with at that age. They [the girls] do well on achievements … I can think of one lad, he hasn't achieved … We've noticed a lot of young lads that fall into that category, because usually the mothers with [has] mental health issues. And usually they hit 12 or 13, and they again begin to challenge authority, and just say, 'This [school] isn’t for me. I'm putting me foot down’. Then, ‘I'm gonna walk away from it'. And they're the ones that are more likely, when they pick up 16 or 17, to kind of go back and think about vocational routes. (Clem and Sara, young carers’ workers, area Y).

One young adult carer whom I interviewed, in contrast, believed that boys ‘naturally’ progress to adulthood more slowly than girls, eventually catching up with their sisters, in terms of their propensity to take on a caring role. For 153

example, Lauren had had a very intensive after-school role caring for her disabled older brother Peter, when she was 16, whereas she felt that her younger brother had not been ‘ready’ to care until he was 19.

I spent more time with him, my younger brother, like, less so. I don't know if it was because he was a boy. Or if, just generally, me and Peter get along better. But it would be less so. But now, when Peter comes back home, I think Jamie [younger brother] does more. He's 19 now, and he's strapping. So if there's any help needed on that side, then my brother will give it. But definitely more so me than when we were younger. (Lauren, 24, cares for physically disabled brother). The data analysis chapters which follow have been structured as a sequential narrative which draws on the coding illustrated in this section. Connections to axial and selective coding will be briefly drawn out at appropriate points. In keeping with the grounded approach (Bertaux 1981) adopted, the findings will be related to wider societal structural processes and changes in the Discussion chapter. The issues which will be particularly highlighted in relation to being a young or young adult carer will be gender, social class, and the personally and politically mobilising impact on young carers resulting from their experiences of being pathologised, instead of supported in their caring role. 5.15.2: Use of narrative analysis My approach to the data was also guided by narrative analysis, which is concerned with the ways in which people order their ideas around life events and ascribe causal roles to various ‘actors’ (Easterby-Smith et al. 2010: p183). I found it to be a useful method for separating respondents’ accounts of concrete events from their overall feelings about relationships. For example, young and young adult carers often emphasised the supportive role of third parties, such as members of their wider family, in helping them to make important decisions. However, their accounts indicated that outcomes had been unaffected, because the carer had not been able to see the decision through. This comparison could be used as evidence that respondents’ 154

emphasis upon help with decision-making may reflect the importance to them of feeling supported, rather than indicating the causal factors affecting actual decisions.

5.16: Summary This chapter has discussed the researcher’s methodology and methods, and presented analysis of ethical issues and research processes. The study has been located with respect to biographical realism, and the use of elements of grounded theory within a grounded approach. Background information about respondents has been provided. Examples have been given of changes to the interview schedule which were made between rounds of interviews in order to further explore emergent issues. The use of open, axial and selective coding, and of narrative analysis, have been outlined.

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Chapter 6: Findings from Interviews with Young Carers’ workers 6.1: Introduction In this chapter, I explore young carers’ workers' opinions about young and young adult carers' relationships with older adults. The analysis was informed by the core category, identified through selective coding, of the normalisation versus the pathologisation of young and young adult carers, as discussed in Chapter 5: Methodology. The data will be used to explore ways in which young carers’ workers sometimes conditionally pathologised the lives, family environments and future prospects of young and young adult carers. Young carers’ workers started from a position of supporting young and young adult carers in their roles, and recognising the personal gains which might result from it. However, they saw young and young adult carers as vulnerable in various ways on account of their circumstances, for example, to exploitation, abuse and loss of possible futures. This position was not congruent with that of young and young adult carers (see Chapter 7: Findings from Interviews with Young and Young Adult Carers). The latter regarded young carers’ workers as a source of practical support, not as guardians of their well-being. At the same time, both young carers’ workers and young and young adult carers were highly critical of non-specialists such as teachers and social workers whom, they felt, failed to accommodate to the circumstances of young and young adult carers. Hence the conditional pathologisation which young carers’ workers identified can be contrasted with the unconditional pathologisation which they and young and young adult carers perceived to be all too prevalent in the wider world.

The many categories derived from open coding which were drawn on for this chapter included: quality of parenting; carer competencies; family relations; abuse or exploitation of the carer; carer gender differences; transitions to adulthood; navigation of the education system; specialist versus nonspecialist support workers; and individually versus collectively oriented 156

actions. Axial coding, of intra-category variations, relationships between categories and relationships to contextual conditions informed the analysis. An important intra-category variation identified was the finding (see Section 6.9.2) that young carers’ workers differed in terms of the extent to which they focussed on the young or young adult carer’s needs and problems, as against those of whole families. Respondents who were oriented to whole families were more likely to encourage younger siblings of a young or young adult carer to participate in young carer projects than were those who were more individually oriented. The chapter will not be concerned with using young cares’ workers accounts of service-users as direct evidence of the state of young and young adult carers' lives. However, given the history of the profession as have being, at least to some extent, grassroots-led (Heyman, 2013), young carers workers’ views may shape the future direction of policy. Moreover, the way in which policy is implemented will depend on how those at the front-line of implementation balance professional categorisations of risk with their clients' expressed wishes and sensitivities. Respondents were aware of the research literature on young and young adult carers, and some of my interview prompts referred to existing studies. I therefore make direct comparisons between policy, organisational and front-line practice views below, as respondents did in the course of the interviews. The data analysed below suggest that young carers’ workers can accept the possibility of two-directional adequate care between disabled parent and child, confronting the question of what it means to care for the carer. They recognise the need of young people to exercise agency in securing their own futures in relation to alternative templates of youth as a time for education and development, and as a time of self-standing fulfilment. They avoid automatically problematising gender and class differences among young and young adult carers seeking independence. In addition, they show awareness of the difference between actual and nominal relationships, differences which undermine standard definitions of what makes a family (McCarthy et al. 2002).

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These findings suggest that the state, as actualised in the practice of work with young and young adult carers, is, or at least was, moving towards acknowledging and working with intergenerational mutuality among young and young adult carers. Even more importantly, the young carers’ workers identified problems with prevailing government and media constructions of young people as one-way dependent on adults. They suggested that all young people, regardless of whether they have disabled relatives or not, can, and should be, givers as well as receivers of care, as long as this giving stays within limits which respondents considered to be healthy. All of these problems impact directly on young and young adult carers, whether or not they use support services. The comments that young and young adult carers themselves make about their relationships with adults, presented in the next chapter, can be shown to involve more than just a ‘marginalised perspective’ , since they have been validated by specialist professionals. This chapter opens with an overview of how young carers’ workers viewed the key concepts of care, family, youth and transition. They questioned the possibility of one-way care in much the same way as it is challenged by carers. Furthermore, although the realities of young and young adult carers’ family lives seems to take specialist workers by surprise, their descriptions match those given by the former. Societal notions about youth and transition, however, are dealt with less critically by the practitioners than they are by the carers. It is here that we see some real potential for clashes between the professional view of young people and the young people's view of themselves.

It should be born in mind that the respondents mostly worked with young carers aged under 18. However, all had had some continuing contact with older carers, either through organising groups specifically for the 18-25 age range, or through more informal means. The latter sometimes involved young carers’ workers putting in unpaid hours to support over-18s.

As already noted, my main reason for making links back to the literature on young and young adult carers was that respondents themselves frequently 158

referred to such work, in which case I often prompted them by mentioning other aspects of the literature. For example, among the staff, Kate had strongly critical views of the work of Olsen and Clark (2003), and Jim had highly negative view of young and young adult carers research in general. With respect to young and young adult carers themselves, Lauren described how she had used the 'social model of disability' to counsel her brother; and Daniel used Psychology terms to describe relationships within his family. The use of concepts from the broader literature on interpersonal relationships (e.g. Hooks 1984) is standard practice in grounded approaches, since this literature is needed to explain the new categories of phenomenon that emerge from the data.

6.2: Bad parents as the exceptions rather than the norm: Accounts of inappropriate parental care Young carers’ workers’ views of care generally fitted with the analysis that I drew out at the end of my literature review chapters. They recognised that parental care can also be given to a carer by the cared-for person. They were critical of the media view of young and young adult carers as either lone heroes doing a great job for their families, or multiply deprived victims of total exploitation. Three practitioner interviewees had themselves been carers. They had an issue with mutuality, which will be discussed below, but not with reciprocation.

Trish and Kate strongly believed that risks for young and young adult carers did not arise directly from the extent of the cared-for person's disability. In terms of axial coding, they saw the level of the cared-for person’s disability and the extent to which a young person was at risk as independent of each other. The vulnerability of a young or young adult carer was not, for them, a straightforward consequence of care needs being unmet by the state or older adults. Most [parents] want you there, so they’re quite happy to take up whatever you offer to them – there’s the odd one that’s reluctant. And, to 159

be honest with you, they’re the ones that tend to turn into child protection … A lot of time you go in, and it might not be because of the caring role. It’s because they’re living in a shithole basically! Or there’s no food in the house; or they haven’t got the money to keep the house, and stuff like that; or they’re not going to school and they’re missing out socially on their development and everything. (Trish, young carers’ specialist worker, Town X, my emphasis).

I know more than one [family, where] it's been mums with older sons, who probably could do a lot more for themselves, but kind of enjoy being looked after by their child … I saw [one cared-for mother] riding her bike. So is there any real need for her son to put her in the bath? And where is that on the child protection scale? [In contrast] that emotionally intelligent input that you get - even if you are in a wheelchair, even if you are paraplegic, you can still give that to your child. You can still give that encouragement, and support, and learning. (Kate, young carers’ project worker, Town X, my emphasis).

Kate was suggesting that it is the level of parental manipulation that determines the neediness of the young or young adult carer. Expressed neediness is not determined by the disabled relative’s objectively definable disability level. The finding of alternative sources of practical care is merely one necessary ingredient, if services are to reduce young people’s caring role.

To give an even starker contrast between the impact of the caring role itself and the impact of the wider family context, Clem and Sara described a situation where the involvement of a carer, who no longer lived with the family, was causing more problems than the young person's own caring role. A young man was providing care to his disabled mother, who had also been a victim of domestic violence. The biggest issue was that the perpetrator was still expected by adult social services to provide care to the mother, even though he had been banned from the house by a social worker working with one of the other children.

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[The children’s social workers] will be saying, 'This person can't come and see his daughter, who's their half-sister’, and yet he's round there. So the court and social services are saying, 'We're going to take you to court', and yet they're allowing this person to be there when their mum has a fit. So it's like mixed messages … 'Why are you allowing my stepdad to come in … [Why don’t] you provide the services, and don't allow him in'. (Clem and Sara, young carers’ project workers, Area Z).

Although the solution to the above situation would be better disability services, the main gap to be filled by those services identified in the above account has nothing to do with the young people's ability to cope in practical terms with their own caring role. It has everything to do with the dangerous nature of the other carers who are involved. There may have been reasons to worry about the young person’s own caring role, but there were other, overriding concerns about the very high levels of risk posed by other people providing the care. Although Clem and Sara were indeed asking for disability services to take over from the stepfather, the quotation is not primarily concerned with reducing the young person’s current caring role. Moreover, the young carers’ workers were stating that young people are remarkably able to cope with the practical, organisational and time management elements of the caring role, but not with the emotional aspects of neglectful and/or abusive relationships. Clem and Sara felt that these emotional struggles could have many negative long-term impacts, including a tendency for young women to be exploited by older men with mental health problems. The next section will look in more detail at young carers’ workers’ views of 'normal' young and young adult carer family relationships.

6.3: Family choices of their children’s domestic roles according to perceived competence In relation to the core category of pathologising versus normalising the role of young and young adult carer, two young carers’ project workers who were interviewed jointly offered a nuanced view of this issue. For Clem and Sara, the personal characteristics that set young and young adult carers apart from 161

non-carer youths were forms of individual and family competence that often preceded the caring role. The apparent benefits of being a young and young adult carer could, therefore, be illusory. Clem and Sara supported this view by comparing young and young adult carers with other children within their families who did not have caring roles, and also by comparing families affected and unaffected by disability.

If you had a group of young carers and an ordinary group of young people, and you asked them to do a specific task in organising, and it was competition, I would put my hand up on the young carers because of their organisational abilities. [Non-caring siblings of young carers] are more likely, at least the ones I work with, to have complex needs. They might be accessing CAMHS [Child and Adolescent Mental Health Services] themselves, or maybe services, not a good school-attender. And then that can be put down to, they're not attending school because they've got caring responsibilities, but in fact it's probably not that. (Clem and Sara, young carers’ project workers, Area Z).

In effect, Clem and Sara were directly rebutting the co-dependency concept. They did not believe that young and young adult carers take on their roles because they are part of a cycle of emotional problems within the family. They were instead suggesting that the sibling who takes on the role will often be the most emotionally detached and functioning child.

Partly because of this inherent competence, and partly because of additional skills that their clients gained through care-giving, Clem and Sara had found high levels of achievement among their clients, provided they had managed to regularly attend, and engage with, school.

Certainly within the [14+ end of] the education system, the attainment and the way it's organised, it fits into that [young carer] mindset, of organising themselves to do specific pieces of work, to attain something, and I think they've got the edge. (Clem and Sara, young carers’ project workers, Area Z). 162

However, despite giving this apparently positive description of potential for success in education, Clem and Sara were not saying that being a young or young adult carer was beneficial to the person who took this role. Instead, they believed that young and young adult carers tended to take on such roles because they were highly confident individuals. By implication, they might have done even better at school without the ‘burden’ of caring. Also, many of the young carers they worked with had started missing school before they got to the stage in their education where individual attainment is respected by teachers, due to an inability to cope with group learning. Moreover, the young carers’ workers had found that even higher achieving young and young adult carers spent their youth in serious emotional turmoil. Their lives were often damaged in the long-term as a result. For example, several young women had got on to a career path, only to drop out because they had formed a relationship with a boyfriend who needed care, reportedly as a result of having developed an emotional need to be needed at that level.

The point that Clem and Sara were making was that it would be wrong to regard young and young adult carers as simply ‘victims’ of their nominal relationship, such as eldest daughter, to a person who happened to need care. For example, less competent siblings with the same nominal relationship did not always end up taking the same role. Clem and Sara gave the example of twin boys with very different personalities who took on distinct, complementary caring roles. Again, it was the qualitative characteristics of their relationship to the cared-for person that counted. Kate and Tina had a similar view of young and young adult carers’ personal attributes. Tina saw them as comparable to young volunteers in terms of having positive personal qualities prior to taking on a caring role. Kate suggested that the typical family containing a young or young adult carer was potentially more loving than the average family not affected by disability.

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In most of the families, when there’s a young carer in the family, there’s conversation. It’s quite loving. You can see the loving environment. Even if they’re not the best dressed, or the best looked after, you can see that their parents love each other. And [the parents] will ring you up, ‘Eeh he said this happened last night [at the project]’. Whereas, with other children, children like that [caring for someone with a low disability level but highly demanding parents], they tend to be more angry children. (Kate, young carers’ project worker, Town X).

Kate was comparing parents in terms of attributes that, in her opinion, exist independently of their disability, rather than suggesting that either positive or negative family practices develop because of disability. She believed that, in contrast, families with less adequate parents become more controlling in similar circumstances.

6.4: Parental care as the key determinant of young and young adult carers’ well-being As illustrated above, many workers believed that the occupation of caring roles was determined by personal attributes of the young carer and other family members that were independent of nominal position within the family. Pam and Anthony were the only workers who felt that the oldest able-bodied child still living at home would usually tend to take on the bulk of the care. The other workers put adoption of a caring role down to family dynamics, and differences in siblings’ levels of competence. However, despite seeing allocation to caring roles as inevitable, Pam and Anthony nevertheless drew a distinction between missing out on a positive parenting relationship, and suffering because of having a caring role. They believed that young and young adult carers of siblings feel the loss of the ‘proper’ parent more than do those of disabled parents. With respect to the core category around which data analysis was undertaken, Pam and Anthony pathologised the lives of families containing young and young adult carers more than some other young carers’ project workers such as Clem and Sara, whose more nuanced views were discussed above. 164

But we do hear sometimes where people are [saying],‘I can't wait to get out!’ And in my experience, the ones, off the top of me head, this isn't necessarily the ones where they're looking after the parent, it's mainly where there's a sibling. And it's sometimes, ‘Ah it's too hectic to live at home, I just can't wait to get out’; or, ‘I never got any attention anyway. It was always on them [the disabled sibling], so I'm leaving, me, I’m away’. (Pam and Anthony, young carers’ project workers, Town Y).

According to this view, the sibling of a disabled child could most feel the loss of parental attention regardless of whether that person had any caring role at all.

6.5: Accounts of young and young adult carers who are receiving satisfactory and appropriate parental care Not only did young carers’ worker respondents believe that the typical young or young adult carer’s family environment was a loving one. They also felt that the parental care received in most such families was to the satisfaction of the young person, and appropriate in terms of societal standards. Pam and Anthony described a very supportive family environment, which I myself had observed to be quite well materially resourced, even though the young carer concerned was carrying out a high number of hours of practical caring. Nevertheless, the trade-off, described below, between the mother working and her son enabling her to do this by working hard as a carer, is unusual in our contemporary society, and invokes suggestions of child labour.

He's done quite a bit [of caring], because his mum works or worked, but he's at college and that. He's got the motivation, and the family support behind him to get out there. (Pam and Anthony, young carers’ project workers, Town Y, talking about 16 year old boy caring for his physically disabled father).

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The above quotation describes a highly reciprocal relationship. The mother might not have been able to go out to work without her son's help. However, as the quotation implies, she probably needed to work in order to provide a materially prosperous environment for her son. Reciprocation is not the same as mutuality, since mutuality implies a relationship of equality. In contrast, reciprocity can be based on a young person acting in a certain way because they are completely dependent on the earning power of an older person. Nevertheless, the young carers’ workers quoted above were open to the possibility that a young person’s caring role could enable their parent to meet the needs of their children, including those of young and young adult carers themselves.

6.6: Views about young and young adult carer family dynamics As explained above, young carers’ workers did not expect care within families to flow in one direction. They believed that, from the perspective of families, needs have to be met within the resources available to that family, even if that means the child taking on a caring role. Better disability services would help to alleviate those needs, but the workers are describing a world in which such services do not exist, or are provided in an inappropriate way (see next chapter). However, despite feeling that young people could be responsible for tasks and take on specific aspects of a caring role without undermining the quality of parenting, young carers’ workers did not think that it was possible for the young person to become responsible for the overall dynamics of the family. Young people were assumed to be powerless when it came to determining overall family dynamics, as such power was seen to lie primarily with parents. This inability was viewed as being partly due to the parents’ position of power, and partly to the children accepting the implications of the parents’ nominal role as parents. This gap between young and young adult carers’ significant roles in supporting the family and their lack of power over family dynamics could leave them vulnerable to exploitation, or even emotional abuse. For example, Kate

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described one parent who had got her son on TV in order to complain about his perceived failings in caring for her. So the poor [young carer’s] on [TV], with his mother complaining that he puts her to bed and then stays up and plays on computer games 'til half past ten, when she thinks he should go to bed when she does. I know that sounds like I'm a nasty person, but I'm not. There are harsh realities of life, and I don't think you can go around forever thinking, ‘Poor you’, when [I] can blatantly see that you're taking the mick. You poor soul! You can't buy him clothes that fit him, but you can get him on the telly! (Kate, young carers’ project worker, Town X).

Kate was describing a situation that could exist whenever a child had placed themselves at the beck and call of a parent, rather than one that is directly linked to the parents' physical care needs. One young carers’ project manager saw children as having slightly more power to at least impact on family dynamics, even though the impact was often negative. Her project team had carried out research on parents who had ejected their child from the house when they had reached the age of 16. They concluded that better support for the parents to manage the overall family dynamics could have prevented this from happening.

[The situations of] parents of teenagers are already difficult, parents looked after by their teenagers, doubly difficult. And there was a number of them who had not been able to cope, and it resulted in asking their teenagers to leave at 16/17. And, as part of the young homelessness strategy, they asked us to do a focus group of those parents, to, obviously, try to prevent it happening. And that was really how we were picking up a whole load of stuff about feelings, about having information much earlier, needing more support both as a family and as a parent. (Tina, young carers’ project manager, town A).

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Tina did not feel that, in such situations, the parents were manipulative, or even exercising control. It was simply that they did not know how to cope with the emotional aspects of the young/young adult carer to cared-for parent relationship. On the other hand, Tina felt that young adult carers were ready to leave home in terms of their practical skills, but struggled to live away from family members after they had spent years in which they had 'always had their eye on' those people. Tina was maintaining that power struggles in parentchild relationships go both ways, and also exist in able-bodied families. Hence, she referred to parents of teenagers in general as being in difficult situations. According to her, family power-related emotional conflicts are exacerbated, rather than created, by the children having a caring role.

In contrast, Kate felt that there were often oppressive assumptions, in the sense of being unreasonably burdensome or severe (Webster 2013), about a young or young adult carer’s lifelong duty to care which originated from caredfor parents. These assumptions could be taken on by younger siblings, and directed at former young and young adult carers who had left home.

One [young carer] had an older sister who had left home. And he considered her a traitor, and considered that she'd abandoned them, and now he had to take on her role. He ‘had to do it’ which I found unbelievable! The lass was married and had her own children … He decided he would go to college. His mam at first said he couldn't, he would have to get carer's allowance and whatever … We tried to talk to him about not having to put all his eggs in one basket, not having to be a carer. [We were] trying to, maybe, not instil rebellion, but instil a sense that this wasn't his lifetime role. (Kate, young carers’ project worker, Town X). The use of ‘unbelievable’ and of ‘instil rebellion’ suggest that Kate wanted the young carer to overthrow the hold that his mother had over him, and, perhaps, even to be inspired by, rather than condemning of, his sister. Her words imply that the mother may have been ultimately responsible for her son’s negative attitude towards his own and his sisters’ need for independence. 168

Clem and Sara had also found that relationships with non-disabled, non-carer younger siblings could be affected by an older sibling’s adoption of a caring role. Sometimes this dynamic resulted in additional time demands being placed on young and young adult carers.

Very often, the younger sibling can be, kind of, in a caring role for the [carer] sibling in that situation, so that's where, I suppose really, all the goal posts have changed. The families have just, like, normative roles. And [the younger siblings] are looking at the brother and sister not perhaps as a brother or sister, but as a person with some kind of caring role as well … And it's that separation, really, of the older sibling being with us, and spending time with us. And [the younger ones are] feeling this separation, this loss of part of the ‘parent’ going when they're with us [at the project]. (Clem and Sara, young carers’ project workers, Area Z).

In this account, Clem and Sara suggested that their clients need professionals to give them the types of experiences that would teach them, and their families, how to separate being a young person from being a carer. They were not implying that being a carer makes someone inherently vulnerable to having their transitions decisions undermined. However, they were suggesting that some families affected by disability have a fundamentally undermining modus operandi. This approach is based on a family-wide belief that a certain person is responsible for all care tasks in the family, a view which can be challenged through outside intervention.

6.7: Views of youth The above section showed that young carer’s workers felt that some young and young adult carers were vulnerable to the failings, and, in some cases, manipulations, of their parents. They had found this to be partly because of the carer’s lack of power, but also because of their youthful lack of experience.

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In relation to the core category of pathologising versus normalising young and young adult carers, some young carers’ project workers expressed concern that young and young adult carers might miss out on what they believed to be essential experiences for their age-group. In raising this issue, they invoked taken-for-granted notions about essential, fixed developmental stages. Pam and Anthony pointed out that 16-18 is an age at which people can be scared of the unknown. For young and young adult carers who are starting at college, it is the unfamiliar, whereas caring is not. Hence, carers may find it easier to drop out of college and stay at home, particularly if they do not have a supportive parent. However, young carer’s workers did not only view youth as a time of vulnerability and inexperience. They also saw it as a time of opportunity. Kate put this most succinctly when she discussed the danger, as she saw it, of delaying the take-up of opportunities for independent adulthood beyond the age of 16. I think that there’s got to be a balance for [young carers] breaking away [from their childhoods]. I think [16-18] is an important stage in your life. It’s a very difficult one, but everybody has to go through it, and I think that young carers do need to go through that as well. I think that’s probably a crucial stage, when they're either going to develop their own individuality, or stay at home. (Kate, young carers’ project worker, Town Z).

Kate was being asked a question about whether compulsory education should be extended beyond age 16. In response, she suggested that a drawback of this change would be parents having ‘more hold over [young carers] … because they’re being treated [like children by the state]’, instead of being given opportunities to make their own choices in the absence of compulsion. The issue of a small minority of manipulative parents with emotional problems holding young people who cared for them back from independent adulthood has already been discussed above. The new point to be taken from the above quotation is that the opportunity for ‘breaking away’ is seen by Kate as being 170

age-specific. Otherwise it would not matter whether it happened at 16 or at older ages. All of the young carer’s workers agreed that, whatever the national figures might say, young carers in their areas were becoming less and less likely to completely and indefinitely give up on education and training at age 16. Indeed, a close look at the figures reveals that even nationally, the period of being NEET (a young person Not in Education, Employment or Training) for young carers is generally short-term (Heyman & Heyman 2013). Trish, who specialised in helping the most in-need individuals, had found the rates of participation of 16-18 year old young carers in Further Education to be fairly high. They tend to go out and do it [college etc.]. It’s very rarely - I mean you get the odd case - there has been the odd case, where … they’ve wanted to go to college, but just felt that they couldn’t really afford it. And mostly it’s been single parents, and it’s been a mam who’s got mental health problems. (Trish, young carers’ worker, Town X).

Trish saw NEETS as the under-privileged exception among young carers, rather than the norm. In contrast, the less under-privileged, ‘typical’ young and young adult carers were believed to possess a large range of positive attributes that would help them make ‘successful’ transitions to adulthood at the ‘normal’ age, despite their unusual circumstance. The role of services was seen as being about making sure that young and young adult carers recognise their own positive attributes, and have the right support and information to make good, timely use of such attributes in their decisions about transitions.

Clem and Sara described two possible routes through which young people could use leaving school to ‘normalise’ themselves away from only having confidence as a carer. They discussed the ways in which girls, especially, reinvented themselves at this age, through imaginative activities, teenage identity play, and taking up of opportunities for trips away from home. 171

And I think a lot of [female young carers] in the 16+ groups identify very much with the drama groups. And that's what they tell us they do like with drama, they can be someone else … Maybe, because they've had that role at a earlier age, it's something about, they are determined to [at least temporarily] break free from at some point. Something kicks in where they've been, 'I need to be me'. And I have seen young girls, sort of, even try to change their appearance, and things like that. Dyeing their hair and things, just to say, 'This is the person I would like to be'. With the young lads, possibly, not so much. (Clem and Sara, young carers’ project workers, Area Z).

Boys, in contrast, were thought to reinvent themselves through leaving school and throwing themselves wholeheartedly into a career at age 16, in Clem and Sara's experience.

[Going into early years work] helped [one young man] to feel that [he] wasn't different to his peers really, that he was actually a skilled young person, that had something to offer and something to give, and came up value-added. So it really gave him enthusiasm, motivation, the ability to see himself as a person … Some of the young lads I work with, it's a hidden caring role, [and] they don't become part of the lads culture until they go to college, and take up that sort of vocational thing. (Clem and Sara, young carers’ project workers, Area Z).

The point here is not whether Clem and Sara made a valid observation with regards to gender differences. The point instead is that these young carer’s workers rejected the view, put forward in academic texts and policy rhetoric, that the risk of becoming NEET increases with level and duration of caring responsibility. Clem and Sara, instead, suggested that the most significant factor in determining successful transitions is the strategy young and young adult carers use to deal with their being set apart and different. Before age 16, young carer’s workers see young carers as having little choice other than to either hide the role, or be seen as pathologically abnormal. However, they felt 172

that there were more routes available for over-16s towards being treated by one’s peers as a person who was within the bounds of being ‘normal’, albeit in an alternative form.

Kate believed that it was critically important to support young carers before they got to the age of 16, as they might already be burnt-out by that age. Don’t wait [for services to intervene] until they’re 16. Don’t wait until they’ve been doing it for years, and they’re knackered. Get them when they’re still little, still just putting the dishes away … It’s much easier to get them younger, and keep their confidence, and keep them out and about with different people, and having new experiences, and it’s a much easier transition. (Kate, young carers’ project worker, Town X).

Kate asserted, like Clem and Sara, that opportunities for young and young adult carers to develop independence are age-specific. But she was also saying that the young person needs to be pre-prepared to take up such opportunities when the time came. The next section will consider young carer’s workers’ views about what opportunities should be available at age 16 for young carers, what was actually available, and how young and young adult carers were responding to the choices they did have.

6.8: Views about transitions to adulthood Young carers’ workers considered that children should gradually separate their identities from those of their parents, siblings and community subculture as they became adults, through a process that started with their schoolleaving experience. They believed that, by the time people reached young adulthood, they should have taken steps towards becoming independent individuals, with their own distinct tastes, habits, long-term peer relationships, and ideas about the future and resources. As discussed in the last section, young carers’ project workers invoked notions of fixed developmental stages 173

requiring specific, timely inputs, right up to adulthood. Pam and Anthony expressed concern that young and young adult carers might miss out on developing the skills and confidence required for independence. We always say to them, ‘Where’s your future aspiration? You're not going to stay at home forever surely? You're going to want a flat? You're going to want to move out? If it's pre-planned, it doesn't mean it’s going to happen tomorrow.’ (Pam and Anthony, young carers’ workers, Town Y).

Workers had different views on how to inspire young and young adult carers to achieve this level of adult separation from the family of origin, particularly if their parents were not supportive enough to be providing such inspiration. Pam and Anthony would try to persuade young and young adult carers that they should study at college for a reasonably well-paid job as an alternative to full-time caring. Their rationale was that the carers' allowance would not cover costs when they decided to aspire towards a home of their own, and needed the means to pay for it. Kate, Clem and Sara aimed for the smaller steps, such as short training courses and weekends away, that might inspire young and young adult carers to take bigger ones. Either way, young carer’s workers were mostly looking to set young and young adult carers towards a different future by changing the present if necessary, rather than viewing the present as a temporary aberration to be got through. However, young and young adult carers who participated in one study (Tarapdar 2007), discussed above, said that they wanted occasional crisis support from services, rather than ongoing support to change their life trajectories.

The exception was Tina who stated that her job took place in the context of helping young and young adult carers survive acute family crises, after which they could return to their own lives, in their own time. They could then make positive use of their experience.

I think that [young and young adult carers who have already come through the crisis] would probably say, ‘Well, I would put [caring] on my 174

CV’, but that’s only because they don’t need to anymore. [We can say], ‘You’re doing fine, you’re up for it, you’re able, you can put it on your CV and see it as a positive’, I think. [They can say], ‘Well, yeah, I can talk about that’ … And it’s much easier, you'll know yourself, to say something on reflection, that, ‘It used to be like this, and I did this, and I did that, and that’s where I am right now’. So, that’s something that, individually, we treat that separately with each of those young people. (Trish, young carers’ worker, Town X). At the same time, young carer’s workers were aware of practical barriers to achieving successful transitions, even among the most motivated young and young adult carers, and regardless of whether parents were supportive. For example, the part-time employment that give young students their first work experiences were deemed unobtainable to people who might have to leave at an exact time every day, because they would be competing with other young people who were not carers. Tina and Jim had both also found that schools could be overtly hostile to people who did not fit into the normal categories of either going down the academic route, or training for the easiest available work. Jim described a situation that could be potentially catastrophic for a young person's attainment levels and job orientation on leaving school.

A young woman who, to all intents and purposes, is a school failure, but all sorts of issues going on in her life, bless her, all over the place. But, every now and then, makes a concerted effort, looks for support, tries to get back into school … Now this young person loves young children ... But the school has told her she ought to be doing a placement with hairdressers. If she's offered a work placement with hairdressing, she's going to stick two fingers to them all the way … At least what we've been able to do is, we’ve been able to get the school to agree to do something different. Even though reluctantly, they’ve agreed to supporting this alternative move [to a childcare work experience placement]. (Jim, young carers’ project manager, Area Z).

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The above quotation shows how delicate young and young adult carers' transitions to adulthood can be, especially if they have aspirations in an unacademic but specialist category. Like Tina, Jim was dealing with the young person’s immediate problems. Rather than focussing on changing the young person and their family’s attitude towards school, he concerned himself with the school’s attitude towards the young person. However, the general thrust of young carers’ worker narratives was that it was primarily their job to change and challenge any attitudes of the young person and their family that were causing them to miss educational opportunities, rather than to support them in their existing survival strategies.

6.9: Views of policy and mainstream practice I pointed out in the Introduction that young carers’ work is very much in the early stages of development as a profession, and that the lack of radical categorisations of family roles, youth and transitions need to be seen in this light. In order to demonstrate how potentially radical this group of young carer’s workers are, the following section will present young carers’ project workers’ critical views about policy and mainstream practice. These practitioners made two types of critique of policy and mainstream social work and educational practice. One was about the 'young carer' label, and how it had resulted in a norm for what a young carer was that excluded and further marginalised some people. The other was about the way that the view of young people taking-on of caring roles as inherently harmful had been turned into conventional wisdom by the media. With respect to the core category of pathologising versus normalising being a young or young adult carer, young carers’ workers, overall, resisted this tendency with respect to wider cultural images of the role, whilst also identifying vulnerabilities in the circumstances of young and young adult carers, as discussed above. 6.9.1: Critical views of the 'young carer' label One young carer’s worker gave a fairly in-depth account of her struggles with other organisations such as social services. Her aim had been to make sure that the latter’s definition was not too wide in some ways, and too narrow in others, to allow realistic identification of actual young carers. In terms of the 176

definition being too narrow, Kate wanted social services to base their assessments on the actual roles, behaviours and situations within families, rather than on formal features such as whether a young person fits exactly into a specific age bracket.

Families who are not doing anything wrong are put forward for a child protection assessment, not a young carer's assessment [if the child is under 8 and in need]. You know, ‘All these littlelies2, they’re not really young carers’. And it's trying to make the first point that, as time goes on, they will become older and take on more responsibility. (Kate, young carers’ project worker, Area W).

In terms of the definition of young carer being too wide, Kate did not agree with the idea that anyone feeling the impact of family disability could be counted as a carer.

It might be a tenuous link, do you know what I mean? A younger sibling may have ADHD …, but I personally don’t feel that just because you have a sibling with ADHD means that you’re a young carer. My bosses perhaps saw that differently, because they wanted to have the more people on board the better. So, I felt that we, to a certain extent, we’re diluting what actually was a ‘young carer’, and sort of allowing people who perhaps were young carers to be, not pushed to one side, but their problem weren’t as present. (Kate, young carers’ project worker, Area W).

Kate was not arguing that young and young adult carers deserve special treatment over and above any other group in society. But she was saying that their needs are specific, and should be met in appropriate ways. However, there was also some recognition from Kate, and from another pair of young carers’ project workers, that young people themselves can be unhappy with

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the term 'young carer'. Kate had noted an almost militant reaction against the label from young people to whom it might be applied.

The best thing I ever heard actually, we often had conferences for young people, and they always used to say, ‘Young carers are children. We are young people, then young carers. We're not young carers’ … And they were, like, ‘No, I'm a 16 year old girl. I like putting me make-up on, and going out with boys. Just because somebody in the family's disabled, and I have to pay the bills, doesn't change anything’. (Kate, young carers’ project worker, Area W).

Kate also felt that the categorisation of young carers as children in need was problematic if it was allowed to become part of direct practice. She gave the example of youth conferences where the two main categories of children in need were physically separated off from other groups of young delegates.

You get young carers and foster children, children who are in care, lumped together as if they're not real children. ‘They're children, and they're something else!’ (Kate, young carers’ project worker, Town X).

Even more seriously, Kate felt that the 'children in need' categorisation of young carers was undermining the boundaries between young carers’ work and youth offending/child protection work.

I think that I should be talking to the young carer about his caring for somebody … I don’t want to be talking about breaking and entering. That’s not my job, it’s not my field of expertise. It’s very tenuous, this link between social services and young carers, and I think it has to made separate, so that you can [make sure] that parents aren't frightened. (Kate, young carers’ project worker, Town X).

Kate went as far as to suggest that, even where there were reasons to have child protection concerns, the young person as a human-being could still be

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separated from the situation, so that workers could continue to interact with them in the same way that they had prior to identifying such concerns.

Quite often you don't even have to ask questions. You just sit and play on the computer, and he'd start saying, ‘Oh aye, me dad did this’, or ‘I tried ....’. [Social workers tell themselves], ‘You must not have positive relationships with them, you must not be emotionally involved. You must, when you talk to these people, try and get information in an underhand kind of way’. I think that's why people are suspicious, and I would be suspicious as well. So, that's definitely an aspect I would like to keep [in my own practice]. There's nothing wrong with liking the person you're working with. There's nothing wrong with saying, ‘I can't believe you like this music, I like this music’. (Kate, young carers’ project worker, Town X).

According to Kate, having too broad a definition of a young carer impacts on how you work with those who really are carers, as well as bringing in noncarers who divert service resources. Moreover, there is an implication in Kate’s account that all young carers, regardless of whether they use young carers’ projects, are being adversely affected by the negative connotations of the label, and put off from using services. The above is a prime example of a young carers’ project worker being more radically humanistic in her critique of well-documented social work practices than she can be in her critique of virtually undocumented young carers’ worker practices.

Clem and Sara, similarly, observed that, 'We identify them as young carers more than they would'. However, they believed that finding an alternative to the term 'young carer' that would still allow needs to be identified, publicised and met had proved thus far impossible.

No-one has come up with a different name that the young people like, because they get labelled. And sometimes that label has the emotional context with it that they don't want to carry with them. (Clem and Sara, young carers’ project workers, Area Z). 179

Jim, who worked in the same service as Clem and Sara but was interviewed separately, also felt that the term could be used to increase, rather than decrease, the societal exploitation of young carers, since it implied a level of acceptability based on the assumption throughout our society that 'good deeds' should be encouraged.

Well, you know, 'Let's pat this young child on the head, and call her a little star, and give her a gong, and say how wonderful'. And never think, 'Is this screwing up this young person's life?’ (Jim, young carers’ project manager, Area Z).

Jim also pointed out that the young carer label was associated with a stereotype of someone who provides physical assistance to a family member, and that this image specifically excluded the most needy young and young adult carers, who were cleaning up the blood and sick of substance abuse or domestic violence.

Kate, Clem and Sara also had a concern about the 'young carer' label being misused by other groups of professionals, as a way to get services for disadvantaged children in disabled families who were not in a caring role themselves. They discussed the knock-on effects that this could have on sibling relationships. Kate had found that social services had started to try and 'bend the rules' to get other categories of needy young people included, for example because a sibling happened to have ADHD, which was overshadowing the specific nature of the support that they were supposed to be offering for young people in an actual caring role.

As time went on it became, because of the kind of services -, we do things, and come summer holidays we take the kids away. There isn’t a lot a services that are available like that. (Kate, young carers’ project worker, Town X).

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Clem and Sara identified a slightly different scenario, where social services were deliberately directing young carer resources towards the right families, but the wrong siblings within the family, where the young carer was attending school, while the falsely identified sibling was not.

Because, even though the professionals will ask us, 'Why aren't you working with this younger one?’ But they're more likely, at least the ones I work with, to have complex needs … not [be] a good school attender. And then that can be put down to, ‘They're not attending school because they've got caring responsibilities’. But, in fact, it's probably not that. (Clem and Sara, young carers’ project workers, Area Z).

The above response followed from a question about whether professionals sometimes used the young carer designation inappropriately in order to access services for children in need who were not young carers. The implication is that a child with complex needs would not acquire the competence to become a young carer, particularly when a competent older sibling was already covering the caring role. Clem and Sara’s project was unusual in being so strict about restricting access at the level of the individual child.

It would appear from their responses that Kate, Clem and Sara may have preferred the broader and less medically based term used by Fox (1995), namely children and young people with ‘home responsibilities’, as a way of putting the focus back on to the children's role, and away from aspects of the family that they thought should have nothing to do with young carers’ projects.

In summary, Kate, Clem and Sara were simultaneously concerned, firstly, that the definition of who could be counted as a young carer had become too broad; and, secondly, that the assumptions about what a young carer’s life is like had become too narrow. Again, it needs to be emphasised that, although the workers were speaking from their experience of working with young

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carers’ project users, the pathologising of care by society at large is likely to impact on all young and young adult carers.

6.9.2: Critique of the 'Cinderella Syndrome' Those who did not have a problem with the way that the label was being used to access services, nevertheless could have a concern with the status of ‘young carer’ being categorised as a form of deprivation. Again, they believed that this type of construction could actually be the cause of young people being marginalised, and further pushed into unsupported and potentially hidden caring roles.

In contrast to Kate, Clem and Sara, practitioners in the other three young carers’ services covered by the study, felt that the term 'young carer' could be used legitimately when disability was impacting on the primary and secondary care dynamics in the family. This could be done regardless of whether a particular service-user was currently responsible for any specific caring tasks. Pam and Anthony (Town Y), Trish (Area W, different service to Kate) and Matt and Tina (Town Z) had confidence in their assessment processes, and those of other professionals, at least with respect to appropriately identifying young carers’ project clients. Unlike Kate, Clem and Sara, they had not encountered problems in relation to professionals drawing a distinction between young people with a current caring role and those living in environments where family care is taking place. If anything, they worried that not enough of the population of young and young adult carers were being identified and supported, and that those least likely to be identified might be those most in need. Nor did they have any concerns about other professionals misusing the term on people who didn't have a caring role. However, Tina felt that 'young carers' as a group were sometimes 'targeted' by services for inappropriate interventions.

They are seen as a group which is quite vulnerable. Groups, they can get targeted a bit, can’t they? Whereas it’s more about knowing they can

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get that information when they need it. (Tina, young carers’ project worker, Town A).

Pam and Anthony also wanted to empower young and young adult carers, rather than intervene in a crisis. I'm not knocking other centres’ work, because they do some absolutely fantastic work. And sometimes [the young carers] might need 12 weeks intensive support, a young person, and that means a lot to them, and can set them on their way. But, do you know [we do] preventative work, where they can just come in as much as they want? (Pam and Anthony, young carers’ project workers, Town Y).

In contrast to Clem and Sara, Pam and Anthony felt it was essential to involve the younger siblings of older young and young adult carers, even when those younger siblings had not yet taken on a caring role. The aim of this involvement was to prevent the cycle of young carer isolation and lack of positive self-esteem being repeated for the younger siblings if and when the older sibling 'escaped', or outgrew, their caring role. They, thus, saw this as truly preventative work. They made a direct contrast between their and other services, where a more selective approach is taken. Some [young carers’ services] were set up just to work with 'primary carers', as they call them. And they'll take one child out of four in the family that's been identified from social services as needing support. And they might work with them for X amount of weeks, and then that's it … And people say to us, ‘What do you do with four year olds? How can you class them as young carers?’ (Pam and Anthony, young carers’ project workers, Town Y).

Pam and Anthony had a well thought-out justification for their more forwardlooking approach, based on the assumption that almost any child in a family affected by disability could become a young carer. They also believed that

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making distinctions between carer and non-carer children takes away from the pull of their service as a fun and empowering place to be. Well, if they’re in a family where mam's got serious mental health issues, and there's two other older siblings, and one's been identified, and yes we’ll, we'll take that young person in, because we want them to come and use our service! To get away, even if it's just a day or half a day, so they see it’s not just [the older sibling] who's got to do it all, there's other people out there. And, as they get older, as they come through, it might take a few years, and then they might be the ones who take the lion's share. But, hopefully, … I’ve tried to say that there's other things out there for them. (Pam and Anthony, young carers’ workers, Town Y, my emphasis).

Pam and Anthony saw the issues arising in families of which a member needed care as systematic ones that could affect every member of the family equally at certain points in their lives. They believed that such issues cannot be solved by referring those who do not currently have a caring role to other groups of professionals. Thus, they considered that children have to be preprepared for problems with their family environment in advance. Therefore, Pam and Anthony pretty much held the opposite view to Clem, Sara and Jim. The latter viewed young and young adult carers' situations as individualised, intense, and in need of resolution. They had, for that reason, moved towards greater specialisation, and more focussed, less generalised interventions. In contrast, Pam and Anthony had brought about changes in their service in order to provide a broader range of support to a greater number of children and young people affected by disability. Wherever possible, they tried to view the young people they were in contact with as a collective, rather than as a case-load of individuals in need of specific interventions:

[Pam] got her job remit changed [from an activity worker] - we're both young carer development workers - because we just couldn't work separately ... We've seen change in the way we work, definitely ... We're able to do a lot more weekly work with them, and … awareness-raising, 184

and we got them in on policy ... If we think they need some sort of counselling, we'll work with them on whatever area that may be. We work closely with the CAMHS team with some of our young people if that's what we feel we need to do. But at the same time, we work with somebody else who might have a sibling with a disability, and they might need some extra attention around certain things. So we don't have a specific remit for the different areas, sibling-carers as opposed to parentcarers, as opposed to mental health. We just collectively work with the young people. (Pam and Anthony, young carers’ workers, Town Y, my emphasis).

Their description of how the service operates is reminiscent of Payne's writing on working with formal groups in mainstream youth-work. Although Payne’s analysis (2001) is more task-focussed, his account of how individual needs can be met within a framework of collective achievement chimes with the unwillingness of Pam and Anthony to make distinctions on the basis of need unless it is absolutely necessary, as this quotation from Payne demonstrates.

Striking a careful balance between completing the project task and paying attention to questions of process and learning: how the task will be completed … if [for example] we discover that problems are arising for some members of the group, we may need to stop one part of the task while we pay attention to process. (Payne 2001: p204).

For Pam and Anthony, support for young and young adult carers was mostly about developing the young people themselves, in order to protect them from future risk, rather than intervening to change the current situation in deprived families. They believed that, in order to appeal to those who do not currently have much of a caring role, the Cinderella image has to be dropped. For the other young carers’ project workers, the Cinderella image was equally problematic, but for a different reason. Their concern was that this image could cause other professions to act unhelpfully towards young and young adult carers whose roles are celebrated, stigmatised or wrongly blanketed with incomparable forms of deprivation. Either way, young carer’s workers 185

may be highly critical of nominal categories, but only with respect to how needs are identified, rather than in relation to questioning whether parents alone ‘should’ be responsible for the way that family relationships operate. Having discussed how young carer’s workers viewed young and young adult carers' transitions to adulthood, and how they viewed the policy context of the phenomenon, various sites of oppression in young and young adult carers’ lives have been highlighted at the micro and macro levels. It is now possible to explore young carer’s workers' perspectives on how such oppression can be resisted. 6.9.3: Views on how both oppression within the family and negative constructions of young and young adult carers as 'deprived' can be simultaneously resisted Kate, Jim, Clem and Sara were the only young carer’s workers to talk directly about using young carers' project to directly challenge oppression in the family. Jim, a manager, had set up his entire service around resisting the stereotype of a 'little star' pushing their mum around in a wheelchair. He did so partly because he believed that most young carers' lives were not like that. He also thought that children should not be encouraged to take on roles that are harmful to them on the grounds that they are doing a good deed. However, Kate was the only young carers’ worker to suggest that young people themselves needed to build alliances with each other in order to resist the manipulations of the small number of disabled parents who were actively seeking to isolate their child. There were two ladies, and their sons were friends …, but they made their sons victims as well. They were [saying], ‘My son's horrifically bullied, the teacher picks on him and the kids pick on him. He has to stay here with me, and I will protect him’. And those boys thought that, and acted as victims, and they weren't victims. When they became friends, and started arguing with each other, I thought that was brilliant. And they weren't intimidated by it, and it helped them that little bit to be able to say, ‘Push back’. (Kate, young carers’ project worker, town W). 186

Again, this comment was not about the amount of care being provided. It concerned the nature of the relationship between parent and child, and the parents’ view of themselves as ‘victims’ of their disability. Although they did not talk about deliberate acts of oppression and resistance, Pam and Anthony did suggest that where young or young adult carers were isolated, the mechanism which held back their social development was the cared-for person's creation of an emotional world restricted to family relationships. They raised this point when they were asked whether the support needs of only children caring for lone parents differed from those of children living in larger family units.

It'd be more intense for them [only children] obviously, if you've got nobody else to bounce off, and the parent's going to rely so much on that young person, for their outlet ... There's too much information, and it's the barriers like that that you can get. [The parents say], ‘Ah he's like me best mate’. But he doesn't want you to be his best mate, he wants you to be his mum. (Pam and Anthony, young carers’ project workers, Town Y).

They felt that their service had a direct positive impact in terms of providing contact with other young people who understood enough to act as reference points. They also mentioned another site of oppression, namely bullying at school.

They do benefit from coming to us, in our groups, you know, [they] socialise in groups. And when they go out on other activities with the young people the same age, they do benefit a lot with that. Because they are the type, they get bullied at school because they are more responsible. They're ‘older’, and they don't understand it, so they say inappropriate things. (Pam and Anthony, young carers’ project workers, Town Y).

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These young carer’s workers were sympathetic to the idea that the marginalised can themselves build alliances against oppression. Their more pathologising views were reserved for parents who did not at least try to support their children towards independence. However, they felt that the remedy for this was often youth empowerment work, rather than trying to end the caring role.

6.10: Conclusion In summary, many young carers’ workers’ views of care, family, youth and transitions fit with the evidence and analysis presented in the literature review. They see a need for a critical perspective, within which issues affecting young and young adult carers can be related to both broader sociocultural processes associated with the transition from youth to adulthood, and the two-way emotional components of caring relationships. However, there are important themes missing from young carer’s workers’ accounts of care, family, youth and transition, which were flagged up by young and young adult carers, as discussed in the next chapter. Firstly, young carer’s workers had little concept of people leaving the family home, and becoming financially independent, but retaining a caring role in which they frequently visited the family of origin in order to care. Such return visits present a challenge to the idea of young adult caring roles being determined by material parental power. Neither did they mention people leaving the family home and subsequently returning due to job loss or finishing university. Such returners challenge the notion of youth as a one-off opportunity. There was little mention by young carers’ workers of wellqualified young people trying to be independent, but failing due to the lack of reasonably paid jobs. Such career failures are not consistent with the view that parents are being manipulative when they say that carers allowance might be the best option. It would appear that such parents may be legitimately adverse to the genuine risk of future failure. If this fear could be removed, then parents might become less favourable towards their child receiving a carers allowance. Similarly, parents mentioned by Fox’s respondents (Fox 1995: p240) allowed their children to miss school because 188

they themselves had had bad experiences of school, and had a fear of their children being hurt in the same way. Some young carers’ workers saw the tendency to treat the young person as a ‘best mate’, rather than as a son or daughter, as a serious form of family dysfunction. In this sense, young carer’s workers rejected the idea that mutual relationships with the older generation could be a positive family attribute. However, they were also clear that being in a harmful mutual relationship with one’s parent(s) was not the same as becoming one’s parent’s parent, in the manner suggested by the Loughborough Group. They accepted that care could go both ways; but did not really accept that young people could have the creative power to work alongside, or perhaps even in opposition to, their parents, in order to change their families. They viewed families as, at best, muddling along, in increasingly difficult situations, giving as much love as possible along the way, until a time when the child would become independent, and relinquish their caring role. They viewed young people as, at worst, being manipulated into giving up living their own lives indefinitely, in order to the care for another person. Young carers’ worker respondents were, in effect, using a cautious version of the strengths model to encourage young people to recognise skills acquired or expressed through caring, and to convert coping skills into resilience. Their methods to some extent fitted with the humanistic narrative therapy approach advocated by Saleeby (2002), particularly when it came to recognising the pride and determination with which young people carried out their caring role. However, in encouraging young people away from limiting their choices to occupations that could be secondary to caring, whilst asserting that being a carer places limits on young people’s day-to-day activity, they showed more affinity with the more critical approaches of Gray (2011), Philip (2003) and Jordan (2000). The young carers’ workers whose views were explored in this study aimed to give their clients an enhanced experience of 'normal' youth, by offering the types of opportunities that children within the average socio-economic range 189

would receive. However, there are challenges that they are likely to continue to face even as they start to resolve the problems already mentioned above. Firstly, as the next chapter shows, young and young adult carers themselves resist the ‘in-need’ label once they reach adulthood, regarding the only legitimate use of a childhood spent caring as deriving from their ability to help others in the future, especially younger carers. Secondly, essentialist concepts of youth are not only gendered, but potentially sexist in terms of their longer term view of women's 'normal' life trajectories. Men can appear to be ‘losing’ more than women if the men stay in the parental home to care, while women marry and take on yet more caring responsibilities. Women are expected to juggle responsibilities for themselves and others anyway, but their acquired strength and resilience can tie them more firmly than ever to subordinate roles (Gray 2011). However, as a final point, it is not necessarily a problem that young carer’s workers have different perspectives to those of carers. In the same way that care managers have been shown to view carers' coping strategies as less successful than the carers themselves would view them, we should expect young carers’ workers to be cautious about relying on the coping strategies which young and young adult carers may adopt. In many ways, young carers’ workers are simply working to stay involved with their clients, in order to support them through future crises. For the most part, their minds seem to be open to accepting any strategy that will allow young and young adult carers a degree of informed, independent choice.

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Chapter 7: Findings from Interviews with Young and Young Adult Carers

7.1: Introduction This chapter will demonstrate the radical potential of the present generation of young and young adult carers to challenge oppressive norms about young people being in need of constant adult guidance. As with the last chapter, the literature is often mentioned because many respondents were referring to it themselves. For example, one respondent talked about the 'social model of disability'. Another mentioned the gap between the concepts which social workers are trained to use and those employed in practice.

The radical potential of young and young adult carers arises from the contradiction between their experiences of family life as a mostly normal state of affairs, which they have grown up with, and a wider cultural narrative which pathologises them, both directly, and through sanctioning non-compliance with models of parenthood. Exploring the tensions associated with the core category of the normalisation versus the pathologisation of young and young adult carers from their perspectives will be central to this chapter. Examples of the many open coding categories which are drawn on include: the relationship between the carer and cared-for person; time management; relentlessness of care work; listening to versus ignoring young carer’s views; peer relations; isolation; personal maturity; recreation; navigating the education system; leaving the parental home; collective action; social work support; and material resources. As with Chapter 6, axial coding of intra-category variations, relationships between categories and links to contextual conditions informs the entire analysis. An example, already discussed in Chapter 5: Methodology (see Section 5.15) is analysis of differences in the relentlessness of care work, and their variable relationship to levels of disability in relation to other contextual factors.

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Young and young adult carers cannot live separately to the adult world in the manner of ‘young outsiders’ (Mills 1973). Therefore, their only radical options are either to take charge of adults, or to build mutual relationships with them. The first sections of the chapter will offer evidence suggesting that, although young and young adult carers continuously seek to extend their nonhierarchical relationships with adults beyond the practical necessities of caring, they rarely experience intergenerational mutuality. This is due to the bureaucratic nature of most youth-adult interactions, which seems to impinge even on family life. One example is the system which forces parents to consider their child as part of their package of entitlement to housing benefit. In the past, families decided for themselves, often quite creatively, how best to allocate rooms according to need (Pember Reeves 1913). However, the intergenerational mutuality which does occur has tremendous practical and emotional value in fostering self-efficacy in the transition to adulthood. It also carries risks, due to closer contacts with older, potentially predatory, men, for example.

The implications of such challenges to the cultural template of intergenerational relationships are then discussed in terms of whether young and young adult carers' long term prospects for material independence appear better or worse than those of their non-carer peers. Eleven out of thirteen of the young and young adult carer respondents directly challenged the idea that they lacked the ability to make informed choices because they were young. Ten of these respondents also challenged the pathologising idea that their transitions to adulthood had been adversely affected by their caring roles. Twelve of them rejected the assumption that their disabled parents/guardians or older disabled siblings were any less a source of support than they would have been if they had not been living with disability.

Where a family member had ceased to have regular contact, respondents mostly challenged traditional ideas about family members being indefinitely obligated to care. Instead, they suggested that obligations can evolve over time, in order to fit in with changes in personal relationships and 192

circumstances. These challenges were communicated clearly in expressions of feelings and accounts of practices. Moreover, the emphasis respondents placed on young people in general, rather than just on young and young adult carers, suggests that they have adopted a wider perspective, which might equip them to become the leaders of the future, rather than to end up as marginalised workers in low status occupations.

7.2: The disabled can still look out for their families: Reciprocation as a route to mutuality? Reciprocation can exist without mutuality. However, mutuality is unlikely to exist without at least some reciprocation of care. Therefore, the first question to be asked is whether the care given by young and young adult carers was being reciprocated by the people they cared for, or whether the cared-for people had become unable or unwilling to give care.

Most young and young adult carers viewed their current relationship with the cared-for-person as reciprocal, because the cared-for person continued to provide emotional support, and encouragement to get on in life, albeit as an adult imparting wisdom rather than a mutual partner on a shared journey. For many respondents, being a carer meant that someone else was managing their activity to structure an otherwise empty day, given that nearly all of them had had some gaps between various courses and jobs. Jack had had a long period of being NEET, and had only just started a course. Caring had given him something to do while he waited for the right opportunity.

Respondent: [Caring] makes the day pass by. Nothing else really to do, when you haven't got a job or anything. Interviewer: is your nanna pleased that you're going to start college soon]. Respondent: Aye, it keeps me out of her way! (Jack, 18, cares for physically disabled grandmother).

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Jack was implying that his grandmother decided when he should be helping her, and when he should be out doing his own activities. Hence, she wanted him ‘out of the way’ some of the time, even though she needed him around to help at other times. So, in this sense she remained active in looking after him and his interests even after he went to college. However, he needed help because he was at the start of his life-journey, whereas she required help because she was approaching the end of hers. They could still support each other, but each in different ways. By affirming that the cared-for person reciprocated support, although not necessarily in kind, young and young adult carers implicitly challenged pathologising notions of their relationship with a cared-for person as exploitative.

Disabled relatives who were older than the respondents reportedly saw themselves as top-down imparters of wisdom to the young or young adult carer who was assisting them. Lauren’s disabled older brother had developed strong protective instincts, since her father had left home.

I think because [my disabled brother] was the oldest, and he was, like, expecting my dad to look after us, because, I think, he kind of felt a sense of that [falling on him instead]. When I go and see [my brother], he'll be like asking me if I've got a boyfriend, and he likes taking that role, you know, taking charge. ‘How is everybody? Is everybody doing everything right? Is everyone taking care of each other?’ (Lauren, 24, cared, and continues to advocate, for physically disabled older brother). Like most carers, Lauren did not see an older family members’ disability as getting in the way of their ‘natural’ leader and protector role, as parent, guardian or older sibling. However, younger disabled siblings were reportedly less likely to form ‘normal’ relationships with their sibling carers. They were seen to only take away from the total amount of care and concern that the young or young adult carer had formerly expected to receive from their parents. They were an exception to the patterns of reciprocity between the carer and cared-for persons.

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It can be concluded that most people did not see their families as selling them short in terms of reciprocation. Those who would ‘normally’ be expected to provide day-to-day care and attention, generally parents and older siblings, continued to do so, regardless of who was disabled and who the carer. Instead, they often saw the outside world them and their family down, especially financially.

Really just while I was at work, [we needed] someone to come in [and assist my mum and sister]. The social worker said [we weren't entitled] ‘with you being working’. I said, ‘I only get £600 a month!’ … I don't get a penny for doing what I do for me mam … I'm doing a second job. I just don't get paid and taxed, and I'm going to [meet Prime Minister Gordon Brown] about it, because I don't personally think that we should get penalised because I work … Because there's two of them, we'd have to pay twice. So, that's £10.50 an hour each. So, it means I would have to work four hours just to get an hour of care for each of them…. [If I didn’t work I’d get] £50.55p [a week]. But yes I'd get 20p an hour! (Lucy, 19, cares for physically disabled mother and sister, my emphasis).

Lucy was implying that her main reason for continuing in work, undertaking a thankless ‘double shift’ of job and a full time, unsupported caring role, was that the Carers Allowance, which at the time was £50.55p a week, paid so little. She felt that it was her mother and sister who suffered, as they were left scraping around to get their needs met by other relatives, such as Lucy’s 80 year old grandfather. From her perspective, the system was placing the entire responsibility, both financial and practical, on her young shoulders. She was forced to choose between getting services, and being in a state of jobless benefit dependency, or getting nothing at all from the social services system. She and her mother were having a mutual experience, but it was of suffering. There were some exceptions to the ‘normal’ pattern of reciprocal family relationships, which arose where the cared-for person was incapacitated from even emotional reciprocation. Despite retaining the motivation to continue 195

their role as an older, more experienced imparter of wisdom, the mental strain associated with some physical conditions can result in cared-for parents and older siblings being incapacitated from looking out for their families (Tarapdar 2007). This was the case for Daniel’s mother.

The simplest tasks that we do - just talking for half an hour -, it would make her so tired that she'd have to go to bed for hours maybe. (Daniel, 23, cares for physically disabled mother).

Once communication is fundamentally limited in that way, there is no adaption that can compensate, and it becomes very difficult for parents to fulfil their role. Daniel did very tentatively use something akin to the ‘parenting one’s parent’ metaphor that has been so controversially employed by the Loughborough Group. He compared caring to looking after a child in terms of the impossibility of taking a break. When people are [asking], like, ‘Are you going home [from university]?’, it’s just, like, you know, what they're thinking home is. Sometimes people have said, ‘Do you ever get a break?’, like a break from caring. I suppose it would be the same thing as saying to someone, ‘Do you ever get a break from your child?’ It’s like, you can’t really push that person aside. It's just the responsibility is always going to be there. (Daniel, 23, cares for physically disabled mother, my emphasis).

As discussed in Chapter 5: Methodology, in the section on data analysis, this comment provides a good example of axial variations within the thematic category ‘relentlessness of care demands’. Daniel used the metaphor of a child in relation to him spending most of his time living away from home, and trying to get information at a distance from his brother about the state of his mother’s health, then picking up on incomplete household tasks when home for the holidays. It may be as much the challenge of communicating with and about the cared-for person as the care tasks themselves which is experienced as relentless. Daniel showed deference towards his mother’s authoritative knowledge, rather than being orientated towards a mutual exchange of views. 196

This deference, perhaps, derived from his need to glean as much as possible from his mother’s sparse but highly valued communications.

Although the main caring role had passed to his brother, Daniel felt that the latter had less of an emotional relationship with his mother than he had.

My mum always says it was much easier raising me because we seemed to have a natural bond from when I was born. I think I'm more of an intuitive and emotional person [than my brother]. So, there's always been that thing between us. (Daniel, 23, cares for physically disabled mother).

The closeness of the relationship was amplified by the caring role, almost as if the family’s situation provides an explicit stimulus to deepen and crystallise emotional connections within the family. Yet, it was certainly not determined by it, even though the mother was so incapacitated that she could barely communicate. The cared-for person in this family had always been an authoritative mother. To the extent that she was still able to communicate, she remained so. This point is documented in Section 7.5, below.

7.3: The need for greater mutuality Reciprocation, illustrated above, was an element in the relationship between nearly all carers and cared-for people. Mutuality was an option within the repertoire of possible relationships. However, in general, families preferred to maintain cared-for people who were older siblings, parents or grandparents in a top-down role, as imparters of wisdom. The caring role intensified relationships, but parent-child roles usually remained along the same lines as the roles that existed prior to the child becoming a carer. If young and young adult carers are to seek mutuality with older generations, it is likely to be with people outside of the family. In relation to the core category of pathologising versus normalising being a young or young adult carer, seeking mutuality was a key goal for those who strove to achieve the latter.

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Young people will always test the boundaries by edging towards mutuality (Milroy 1987; Willis 1977). However, young and young adult carers test those boundaries for immediate allies in a struggle for education and career survival. If they cannot achieve intergenerational mutuality within the family, they must seek it from other adults in their social network. Just because a young person believes in intergenerational mutuality, does not mean that they will get it from those around them. Lucy experienced conflict whenever she was expected to submit to the authority of professionals without question. These conflicts arose because professionals’ perceptions of her mother’s needs always seemed to distract from the actual needs of the family, as Lucy perceived them.

[After an ear operation], I was in a ward with all these little kids. I was only little myself … I was sitting on the bed, and my mam was standing up when she could. And she went, ‘I feel funny’. I had a bandage half off me head. I said, ‘Mam lie down’ … I said, ‘Just give her some air. She’ll be fine’. They said, ‘We’re going to have to send your mum to casualty’, I said, ‘Oh just leave me!’ (Lucy, 19, cares for physically disabled mother and sister, my emphasis).

The tale was told with humour, but the serious point being made was that the very presence of a disabled parent can start a panic among professionals that caused the child to become invisible. The young carer was left trying, often unsuccessfully, to mitigate this situation by pre-empting the panic. Lucy felt the need to play the ‘expert’ who advises the professionals about what to do to make the situation ‘fine’. If the professionals cannot, or will not, engage with this need for the child to act as a knowledgeable quasi-adult, then they have to distance themselves from the child.

The only professionals whom Lucy trusted to appreciate her position were the young carers’ workers she had known since early childhood. She felt able to ask them for specific pieces of practical information. However, she trusted them precisely because she knew, and felt a level of mutuality with, them. For example, she was able to respond to the young carers’ worker who 198

challenged her for throwing her mother’s social worker out, without compromising the relationship with that young carers’ worker, as documented in Section 7.5. Thus, she needed the relationship to work at a level where her views and the young carers’ worker’s views were equally valid.

Lucy also felt that she put as much, if not more, into the young carers’ service than she got out as a young adult. As much as the young carers’ workers might want to change Lucy’s life, rather than act as an intermittent source of support, as required, Lucy mostly wanted to maintain a relationship with the project through lending her expertise. This desire was expressed not only through the description of valued conversations with young carers’ workers that were carried out as if between equals, but also through her accounts of instances where her practical contribution was needed by the project. She felt proud that the young carers’ projects were in need of her support rather than vice versa. I’m doing the newsletter group on a Monday. I was there yesterday, and then we’re doing a helpline. Because I secured 18 grand for Young Carers at [Town Y]. We had to go to the [satellite] centre and show these other young people what we wanted to do with the room, because we didn’t have much … [The Young Carers Connexions worker advised me about] my CV. And she actually said, ‘Put on there that you’re a young carer, it’ll look good’. So I passed it on to all the younger [carers at the project]. (Lucy, 19, cares for physically disabled mother and sister, my emphasis). The use of the first ‘because’ is an interesting feature of the above quotation. Lucy was saying that the group and helpline were only happening ‘because’ she and her fellow young and young adult carers went out and acquired money for the project. This is quite different to the conventional image of young volunteers being grateful for the opportunity to participate in the adult world. In talking about her own CV, Lucy immediately thought of passing the information on to other young and young adult carers. This thought pattern illustrates how much she saw her own needs overlapping with the needs of 199

others. However, Lucy’s behaviour was not entirely selfless or irrational. She had a great deal to lose if she did not maintain her relationship with the young carers’ project, as they were only people she felt able to go to for information and advice. Ideally, she would have had mutual relationships with project workers whose funding was secure and adequate, leaving her with one less problem to worry about in her already over-burdened world.

Daniel went a stage further than any of the other respondents in describing his need for more mutuality. He felt that most of the professionals, peers and extended family members whom he knew simply lacked the capability to enter mutual relationships with carers. You say, ‘My mum's …’ and they can see it for themselves, but they can't put themselves in your shoes. That’s what I find about a lot of people. They can't put themselves in your shoes. They just try to understand things as the way they [themselves] are. So, you kind of give up, if you know what I mean … It kind of leaves you alone sometimes, because, whereas you can understand that someone else feels uncomfortable about something, they can't understand that you're [in the situation of a young or young adult carer]. (Daniel, 23, cares for physically disabled and seriously ill mother).

The above quotation is concerned with empathy rather than mutuality, but mutuality is about sharing attributes such as a sense of humour and values (Philip 2003; Lynch 2009). Daniel was seeking a shared understanding of his reality, rather than the type of empathy that leads to practical help. Mutuality is the antithesis to feeling that you have been left ‘alone’. The second part of the quotation shows that, although he had largely given up on mutual relations in his day-to-day contacts, he still had an acute need for them. Although Daniel was talking about his peers as well as the older generation, the real shock for him was finding that the latter, even when paid to help, could not behave in what he termed a ‘reasonable’ way with regards to his family situation. This point is documented in Daniel’s comments on social workers and lecturers, presented in section 7.5. 200

In Pete’s narrative, there was an in-depth description of a special relationship between teacher and pupil, in which help was seen to be mutually exchanged. My form tutor, he had a disabled son, and he used to just say to another teacher, ‘Is there any chance you can cover my lesson?’ And the school were very understanding about that. And I think that’s why [the school understood my situation]. Me and him used to get on. And he'd say, ‘Ah, I can't get this done, can’t get that done’. And I used to say, ‘Just get around it that way, you need it done’. And if we needed anything, he'd say, ‘Ah, we've had that done, go through it this way. Ah, you're not going to get anything done like that’. (Pete, 21, cares for physically disabled father and sister). The quotation conveys a contrast between ‘the school’ as a faceless organisation and the teachers as actual people, who exchange favours with each other and with him. The conversation between Pete and the teacher is based on their ability to contradict one another, and highlight the mistakenness of the others’ actions. Similarly, Lucy, quoted above, needed to be able to counter her young carers’ worker. Pete was depicting, and valuing, a conversation between equals based on a perceived mutual intergenerational relationship.

In the above quotation, help involved information, but Pete carried out a similar exchange of practical favours with his friend, and also his bosses. For example, his ex-boss gave him careers advice in the context of a working relationship in which she was reportedly relying on him to do the driving around.

When I was in the office, I used to go out, have fun, and [my manager] used to come in and do all the paperwork things like that. But it was just because it worked out, because I had the [driver’s] licence, I had the car, and she had a little child. But, like I say, it was my manager told [me], ‘Why don't you go in for [a degree]?’, because I was coming 201

to the end of my fixed-term contract. And I applied for [university]. And then she got the money to renew the contract. And she was, like, ‘Why don't you stay?’ And I was, like, ‘Well, I've got into the university’. (Pete, 21, cares for physically disabled father and sister).

Whatever the manager might have thought, Pete did not like to see himself as a mere cog in the wheel of the organisations that he worked for. The contrast between these exchanges in which Pete almost seemed to have the upper hand, and his experience of being assessed by a social worker, could not be more striking. The experience that Pete recounted, presented below, is not unusual, but it is useful to have such a statement by way of contrast, from someone who was so confident at work and in other contexts.

I'm not too sure if it was a carer's assessment, but I've had assessments ... every turnaround. ‘OK, we'll ask you a few questions, OK?’ They ask you a few questions, walk away ... nothing. Come back maybe six months later - just need to ask you a few more. And we'd not hear anything at all from them … And the last one I was supposed to get, I thought, ‘They're coming. I'm going to ask them, what's the assessment for?’

The same person who entered a confident mutual relationship with his school teachers and bosses could not find a space in a one-to-one conversation with a social worker to ask a simple question. Pete understood why services had to be rationed. However, he wanted to understand the process that he was being asked to participate in, so that he could decide for himself what to expect from the exercise. It is questionable if he would ever have found the means to do so.

Mutuality creates the space for authentic processes in which conversations and events are not pre-scripted (Malm 2008). Some people, like Tom (see discussion under assumption 6, below), are happy with the help that they have received in the past, and do not care about the process through which they receive that help. But other people, like Lucy, Daniel and Pete, who have 202

had to find their own way alone in the past, have an understandable distrust of hierarchy, and a consequent need for mutuality, a need which is rarely met.

7.4: The small exceptions that prove the rule: The rareness of achieving intergenerational mutuality even with the cared-for parent The prevailing assumption in the adult carers’ literature has always been that the cared-for person is powerless. For Morris (1996), both carer and cared-for person are trapped in the same situation of powerlessness, arising from the fact that both are highly likely to be female, and therefore have their particular needs ignored by society. For Ungerson (1987), both the young or young adult carer and cared-for person are nearly always female, and are often trapped by the same patriarch, namely the father of the former who is also the husband of the latter.

It is generally assumed that able-bodied wives will look after incapacitated husbands, and that mothers will care for disabled children (Lynch 2010). However, the young and young adult carers who participated in the present study were not caring for the powerless wives of domineering husbands, nor were they caring alongside such women. They were caring for or alongside mothers, mostly single parents, and grandmothers who controlled the home in which they were living. In general, the family situation was one of reciprocity, not mutuality. Either the cared-for person or the young or young adult carer took the lead in each situation, rather than both proceeding together as a pair. In this situation, the leader held all of the power at that moment in time. Ryan gave the example of family finances to explain why his grandmother was a challenging person to care for. The way I am is completely opposed to the way she was. It came to me to bridge the gap. The generation thing, that's when you forgive it. But when it's something that seems a bit wrong … She'd tell me the amount [of money] after the deductions. She'd shout at me for getting it wrong. I'd be like, 'How much do you get pension-wise’ … 203

As a kid, I did [ask why]. I used to ask her questions, but she was the authority. (Ryan, 25, cared for terminally ill grandmother).

Ryan had to accept that his grandmother was the ‘authority’ when it came to her own finances, and adjust his own attitudes and feelings to suit her. However, when it came to visiting the doctor, he was the authority and he would accompany her in order to explain the doctor's prescriptions and advice.

In other families, the young or young adult carer was increasingly the one who took the lead, although not always in the sense of becoming an authority. For example, Lucy, who was aged 19, and cared for her physically disabled mother and sister, included her mother in socialising with Lucy’s friend who had had a baby. However, there was no evidence that her mother was necessary for the socialising to occur, or that she was ever the leader in those events. In contrast, Paul, who was aged 16 and cared for his physically disabled father, was encouraged by his parents to take his friends on family outings, as a means of helping Paul mitigate the effect of his caring role on his social life. However, the friends served no other function for the parents, and were regarded as in the way if they came round the house. Thus, the parents took the lead entirely in anything in which they themselves were involved.

However, one aspect of life that young and young adult carers did share on the basis of mutuality with the cared-for person involved emotional first-time experiences that the cared-for person and carer needed to undertake at the same time. The novelty of this situation created a new space in which nominal relationships of parent with child, and carer with cared-for person, become less relevant. For example, Lucy described how, after taking her mother to a slimming club, she decided to join herself.

I’ve always went with [mother], but I’ve never joined … Me best friend, it’s her mum [running it]. And I never wanted to get weighed in front of 204

her. So, when my mum reached target, we went to district final, and the week after I said, ‘I’m gonna join’ … So, of course I know everyone in the group, and they’re dead friendly, everyone knows me … So that’s our social life – shocking! (Lucy, 19, cares for physically disabled mother and sister).

Lucy expressed humorous regret that attending the slimming club was their social life, but presented its shared nature as normal. Moreover, compatibility with the caring role was not the only reason she and her mother were attending the same slimming class. Although her mother needed Lucy to assist her in attending the group, Lucy also found it comforting to already be known in the slimming club as a carer before she started attending herself. It is a step towards adulthood to be attending activities like adult slimming clubs for the first time, and it is normal to find such steps a bit daunting and seek out a mutual partner, in this case her mother. Similarly, James’ mother was planning to make use of her son’s broad circle of drinking buddies in order to access an opportunity to lend her professional skills to a social enterprise. According to James, her aim was to get back into work without the stress of her previous job. James had never had a full-time job, and his mother had not worked for some time, so they had come to the mutual decision that volunteering for his friend’s start-up business was just the right small step for them both. She’s wanting to get active and involved with stuff, like [my friend's community enterprise start up] she might want to help with. (James, 21, cares for physically disabled mother).

His mother needed James for physical assistance whilst recovering from a stress-related illness, and wanted to use his social network for her own purposes. However, she also had useful skills which could help her son to achieve his work goals via a social enterprise. Their positions appeared to complement each other, and their exchange was one of mutuality, as their relative power was irrelevant. It was a creative exchange, which created new 205

power rather than a shift in the balance of existing power (Hooks 1984). This process is not stereotypically associated with the complete dependency of a cared-for person on their adult carers, nor the, at best, reciprocal position of young and young adult carers in relation to their parents.

7.5: What young and young adult carers get from enhanced contact with adults: Challenging the assumption that youth need constant guidance from older generations To summarise the last section, young and young adult carers may seek mutual relationships with the older generation. However, they appear to rarely find them, although there may be occasions when different generations can undertake activities or exchange information as if they were equals. Nevertheless, it is useful to know that young and young adult carers are seeking to actively contribute to relationships with other generations, rather than merely to obtain additional top-down adult support. This striving for mutuality carries with it the potential for young and young adult carers to lead calls for radical youth politics. Young and young adult carers could provide an evidence base for grassroots democracy initiatives by drawing attention to their existence as young people forced to make adult-type decisions alongside, or on behalf of, adults.

The following section aims to explore the reality of young people’s transitions to adulthood in a world where they are already engaged with adults to an unusual extent. It contrasts common assumptions about young and young adult carers with the more nuanced view resulting from taking into consideration that they are seeking to use their carer knowledge to get closer to family members from older generations. Moreover, they are using their enhanced knowledge of older generations to engage with the adult world in more sophisticated ways. Examples include taking their time over important life choices, structuring in relaxation time, and striking quickly at opportunities when they came up. However, at the same time, they assert their rights to be

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regarded as full, and sometimes leading, members of their generation of young people, rather than prematurely aged adults.

Assumption 1: Young and young adult carers are isolated because they are ‘older’ in experience than their peers. One of the results of assuming a need for constant guidance is that groups who are clearly givers as well as receivers of guidance, for all the reasons explained above, are automatically assumed not to be ‘real’ children (see previous chapter). When young and young adult carer respondents identified the stereotype of lost youth, they were quick to distance themselves from it. Pauline provided the most striking example. She stated that she spent her teens positively revelling in her free-spirited identity as a pupil and student.

Given the fact that I had a mam with LD [learning disabilities], and I had a child at that point who I had at 14, I probably had bucked all the statistical information, because I didn’t miss out on anything. Nothing was ever hard. I had my gran there, who dealt with everything. And school - [my daughter] was sent to my auntie who was a child minder anyway … I didn’t have these decisions to make … [Aged 16] I studied everything everybody around me did, maybes more. (Pauline, 29, cares for learning disabled mother). The mention of 'everybody around' also studying alongside her suggests a desire to partake in a collective experience alongside one's peer group (Willis 1977). If, as the lost isolated youth hypothesis would suggest, she had already, in her teens, developed the mind-set of a mature student, then her motives for studying would have been less orientated towards her own agegroup. The assertion that she was a free spirited youth can also be seen in the statement that she did not have 'decisions to make', as others made arrangements around her, for example, that Pauline’s aunt would child-mind Pauline’s daughter. It is possible that Pauline was falsely recollecting how much or how little she had to get involved in the decision about child-minding. We could also attribute Pauline’s beliefs about her lack of decision-making 207

responsibility to having been influenced by rhetoric about individual resilience, as Gray (2010) suggests. However, if this was the case, then it was her grandmother that she was over-presenting as resilient, not her 14-year-old self. Pauline was trying to recollect events from over 10 years before the interview, in the late 1990s, as were Frank et al.’s (1999) respondents. Their unanimous view, looking back to the late 1980s, was that their education had been profoundly disrupted at the time, and that their appreciation of education only came later. Pauline’s account provides an interesting contrast across cohorts.

Pauline also refused to accept that the disparity of experience between herself and her non-carer friends was especially different to other types of diversity of experience.

I wouldn’t say [friends don’t] understand. It’s just not the norm to them. It’s like with anything. When you’re sitting gossiping with your friends, having a chat, you know, even if you don’t experience things that are out of the norm to other people, you would still say [what you think]. (Pauline, 29, cares for learning disabled mother).

This statement supports O’Dell et al.’s (2010) claim that the only fundamental difference between young and young adult carers and other young people with adult-type responsibilities is that the media pathologise the former. However, the respondents who participated in O’Dell’s study believed in this construction, whereas Pauline refused to accept the validity of negative views about young and young adult carers.

Pauline was the only young or young adult carer who reported not feeling isolated when she was young. Most of the other young and young adult carer respondents said either that they felt isolated from their peer group, or confined to a small number of relationships with friends who understood the 208

family's situation. In general, the present research findings suggests that young and young adult carers do consider themselves to have experienced the world of adults to a greater extent than their peers. Young carers’ worker respondents described conflicts with peers and teachers resulting from young carers ‘presenting’ as quite adult (see Chapter 6: Findings from Interviews with Young Carers’ workers). However, the point that I am making here is that it would be a mistake to construct young and young adult carers as an abnormal sub-category of young people, who have lost their youth and prematurely entered a ‘later’ stage of adulthood instead.

I have put inverted commas around ‘later’, in order to question the assumption that there are essential stages towards adulthood, or that any such stages are standardised throughout our society. As O’Dell et al. (2010) argued, there are many reasons why a young person might present as more adult than the average young person, and, in consequence, get into conflicts with peers who know less about the adult world. There is, therefore, no basis for assuming that only young and young adult carers are deviant for having responsibilities normally associated with older adults.

Young carers may enter a slightly different form of young adulthood, but it is certainly not comparable to the ‘norm’ of older adulthood. This is because adults who are not carers do not generally have the mindset of a carer any more than non-carer youth do (Frank et al. 1999). Young and young adult carers have to be youths, because there is nothing else for them to be. They have more in common overall with non-carers of their own age than they do with non-carer adults generally (Tarapdar 2007). The young and young adult carers who took part in the present study asserted their right to be both treated as ‘normal’ young people, and respected as carers, with more anger and less regret than has been reported in other studies. Most raised a catalogue of examples of naivety, insensitivity and grossly unprofessional

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conduct from older adults, particularly support workers who didn’t specialise in working with young and young adult carers, towards themselves and the cared-for person.

Young and young adult carers saw themselves as personally different to other young people only in the sense of being better informed, morally balanced human beings. To use Daniel’s term, they saw themselves as ‘more rounded’. They certainly did not attribute to themselves the negative personal attributes that might be associated with a prematurely old and ‘damaged’ youth. Far from thinking that there was a discord between being young and being aware of disability, Lauren suggested that young children who are naïve about disability have a more constructive attitude towards it than do adults whose understanding of disability is limited. Her argument for this analysis was that children are more open-minded.

That was the best actually, when people actually came up [to the wheelchair], like little kids. Like, ‘Why's he like that’, and just ask you, like be upfront about it. Whereas people who are kind of, like, they're staring, and pretend they're not looking. And we're, like, ‘We know you're looking’. So, little kids, I don't know, they were more like accepting. Like my little girl, she's only two, she's wonderful! She's like, ‘Uncle Peter's chair, he's sitting in his [wheel]chair’, so it's quite cute. (Lauren, 24, cares for physically disabled older brother, my emphasis).

To Lauren, it was perfectly natural that the youngest members of a household containing a disabled person would be the most inclusive. Like several other respondents who had been born into a household containing a disabled person, Lauren talked about the past and present sharing of relatively ‘normal’ formative youth experiences with the cared-for person. She felt that these experiences were underpinned by her own ability to view the cared-for person as being essentially no different to anyone else. 210

Me and me brother will fight, not in a bad way, but if he's ‘kicking off’ about something, and everybody else seems to make allowances for him. And I'm, like, ‘Just because he's in wheelchair doesn't mean that he doesn't know that it isn't right to like smack somebody, or, like, call somebody a name’. And, even in that, maybe he appreciates the fact that, maybe, I don't see him as different to my younger brother. And I just think a lot of people [make decisions], even in my family, because it's easier for them for him to do something, rather than what he wants to do. (Lauren, 24, cares for physically disabled older brother).

The depiction of two siblings well into their twenties who are still physically fighting, and who regard the fight as a positive bonding experience, does not fit with the image of somebody who has left their youth behind ‘abnormally’ early. However, the fact that one of them is in a wheelchair also separates their experience from that of non-carer siblings of any age. Assumption 2: Young and young adult carers are held back behind their peers in education as a direct result of their caring role. It is virtually inevitable that young and young adult carers will occasionally miss days of college, or be seriously distracted at college, at times when the situation at home reaches crisis point (Tarapdar 2007; Fox 1995; Aldridge & Becker 1993). The view that young and young adult carers constantly need guidance does not allow for the possibility that they and their families might have developed strategies to ensure that the young people succeed despite the demands of their caring role. One such strategy is deliberately taking their time over their education, and, in doing so, trying out different routes that will make the best use of their already specialised skills, inclinations and abilities (Heyman & Heyman 2013).

The young and young adult carers whom I interviewed had generally not liked school and education. In two cases, it was their sudden dropping out of a university course that had led to their returning to their home towns, and 211

taking on a caring role. However, despite their problems in education, they and their families were more educationally motivated than the younger children who had been observed by the professional respondents who participated in Fox’s (1995) study. Unlike the young carers included in Fox’s study, those who participated in the present project did not seek out excuses to miss school. They recognised that it was hard to get on in today's labour market, if one did not have an education.

For example, James, a university drop-out, currently caring full-time, claiming carers allowance and otherwise formally NEET, was skilled enough to be volunteering in a technical role for a social enterprise, but knew that his poor qualifications record could be a barrier to his future career.

I know a lot about computers, if I say so meself, but I don't have the little bit of paper that says I know a lot about computers. It's really just my own word that someone's got to take. So, yeah, that's a barrier. (James, 21, cares for physically disabled mother).

The reasons for the difference between the findings of my study and those of Fox may be historical. The young carers included in Fox’s (1995) study were younger than those I interviewed, and, therefore, less personally aware of the problem James was now experiencing. They were also going through school at a time when far less targeted help was available in terms of mentoring and support. As explained in the last chapter, such support has meant that nearly all young carers were now going to college at 16, although some were there to catch up on years of compulsory schooling that had been missed. Similarly, two of the respondents I interviewed had missed significant amounts of compulsory schooling. One had been able to make up this loss at the time by studying condensed hours at a youth project. She was the only respondent who had explicitly dropped out of education in order to care. A second respondent had, for reasons that both preceded and were unrelated to his caring role, lived through two years of being NEET without qualifications, but had then enrolled to start a vocational course at college.

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All but one of the young and young adult carers involved in my research were currently working, volunteering, or at college. The exception was John. He had disabilities himself, and could only cope alone with his caring role by immersing himself in practical caring tasks night and day.

[I get out to see people] about two or three times a week. [If I had extra help I would] like I used to at college, like, go out during the day, and come back on a night-time, and look after her during the night. I used to come in on a night and do, like, the housework, and make sure everything was tidy for the next day so she didn't really have to do anything. If she needed like a cup of tea, I'd make her a cup of tea, or a cup of coffee, first thing on a morning, then went to college and come back, and it was the same routine again … [Now] when you've tried to struggle by yourself most of the time, it's just generally hard with getting her in and out of the bath, and then getting the washing-up, and then doing the housework. I never really get a chance to go out. (John, 23, cares for physically disabled grandmother).

With help, John could just about carve out enough time for college, in between the constant demands of caring. Without it, he had little respite from caring tasks. However, he was completely exceptional within the study sample.

In contrast, many respondents, including some who had had no professional support for their caring role, felt that their level of structured extra-curricular experience went beyond that of the peers they grew up with, even if they had missed out on some of the typical unstructured formative experiences, such as having their friends round to their house. In Gemma’s case, the experience of watching a family member become disabled through hard work was the factor pushing her to make unusually mature and rational decisions about her activities and direction. She had decided to train for a relatively stress-free occupation for the sake of her future health, while keeping up the hobbies that she needed to maintain her present well-being.

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At the minute, I love going to cadets. I enjoy it, that's why I go. But when people [at cadets] get up my nose, I'm, like, 'I don’t need this. I've got college to go to' … My mam has worked all her life, basically worked herself to where she is now, like, basically! Sort of like, [I’ll] do my job, and do other bits and pieces, but not kill myself to do it … [Most important for the future is] doing things you enjoy, and having, like, a time out sort of thing, and [being able to] relax. Because if you don't relax, you're just gonna go mad aren't you? … I do have time to relax [now], yeah. Archery's my relax. (Gemma, 16, cares for physically disabled mother, my emphasis).

Thus, Gemma was limiting her activities, in order to look after herself, and maintain a time-balance with the caring role, but was also highly selective and purposeful in the activities she selected. She understood the importance of getting such choices right. For her, the purpose of college was to prepare for the future, and of archery to stay sane in the present. However, she was prepared to abandon cadets if it caused her too much stress.

It would appear that college attendance can remain manageable for young carers, even if it is more difficult, and less enjoyable, than it would be for peers who do not combine it with a caring role. However, one factor that might, nevertheless, make it particularly difficult for young and young adult carers to achieve their long term goals is that they can be prone to conflicts with authority figures. This propensity is due to wanting to take responsibility for the fate of disabled people in general, while being considered too young to speak up in such a way. If I think that there’s something at work [I speak up] – [for example] if I think that there’s something blocking the door. Because, if a wheelchair, [came] they’d not get through. They’re like, ‘Well, how do you know?’ ‘Well I push two. If an inspector came in a wheelchair they’d not get through.’ … The little boy I looked after [at work], he had autism, but he also had a touch of cerebral palsy, and no-one could see it. I said, ‘His speech is impaired, he’s deaf.’ … They said, ‘How do 214

you know that, you’re only 19?’ I said, ‘I’ve lived with it for 19 years, that’s how. I’ve grown up with people, who had cerebral palsy.’ (Lucy, 19, cares for physically disabled mother and sister, my emphasis).

This example illustrates how the caring role can have its most serious impacts in an indirect way. Problems arise not necessarily because college and work are impossible for young and young adult carers, but because they experience organisational practices differently to non-carers. If Lucy had been a non-carer in the same family, she would still have known about pushing wheelchairs, but she would not felt about it to the same extent. The use of the present tense in ‘I push two’, rather than, ‘I’ve been pushing two’, or, ‘I’m used to pushing two’, reflects the here-and-now quality of caring as a day-to-day experience, which cannot be left at the front door on the way to work.

Life can be even more challenging for school-age young carers. Once one enters the workplace, one at least has the status of being at the same job level as older colleagues. Those colleagues might try to use the young person’s youth against them, but the young person can answer back as one who has equal training and job status. At school, the conflicts can start from the very first day that the family's situation is made public in front of one’s peers.

Everyone knew I was a young carer, because in year seven, they talked about carers at school. So, of course, my head of year decided to open her gob [mouth], and say everything to the whole year. Because I wanted to start trusting people [before I told them], because I’d only been in school three months … I just went round, and I just seen her, and said, 'People are just staring at us’, saying, “She’s a young carer”. How do they know, because I’ve never told anybody' … She said, ‘I do apologise’, and I said, ‘Bit late now’. (Lucy, 19, cares for physically disabled mother and sister). Lucy’s problems with the school derived from the young carer label, not practical difficulties associated with the caring role itself. Only two 215

respondents apart from John reported practical difficulties in finding the time to get to school or college and get homework done, and these were dealt with by the mother in one case, and by a non-specialist youth project in the other. Assumption 3: Those siblings remaining in the disability affected family unit are victims, who are usually female, and those who leave are powerholders, who are usually male. This is one of the most problematic manifestations of the assumption that young and young adult carers have a constant need for guidance. They are assumed to be in an indefinite state of role reversal. That state will only end when they are set free from living at the parental home. In consequence, there has been little consideration of the situations of boomerang children with disabled parents who return home; or of stay-at-home children who take their time about trying out a range of career options.

One respondent who had been made to take on a caring role instead of her brother specifically because she was a girl (Joanne, 16, who cared for acutely ill mother) was now continuing the role while living across the road at her boyfriend’s house. She was also attending college and volunteering. Joanne did appear to have an unsupportive family, who showed a lack of concern about her dropping out of school in her GCSE year, but was coping remarkably well. It could be argued that she had taken more steps towards independence than the average 16 year old, albeit risky ones. In most other cases, where carers had non-carer siblings of a similar age, their expressed reason for taking on the role was that they had a closer relationship with either the cared-for person or the main carer. For example, Lauren’s description of her relationship with her disabled older brother, quoted above, illustrates this point. Skeggs’ (1997) analysis suggested that two young women with children, and a third with a child soon to be born, whom he interviewed, were subjects of patriarchy. They appeared, on the surface at least, to have advanced their lives through marriage or partnership and consumerism, rather than through their own careers. However, these participants in Skegg’s study never really 216

embraced the idea of career, and only went on the care-work course they were undertaking as something to do in the immediate term. In contrast, it would certainly not be accurate to say that any of the young women who took part in the present study regarded dependency on husbands or partners as a normal follow-on to dependency on the family of origin. Rather, like the young female carers interviewed by Henderson et al. (2007), they saw marriage as a step that might follow from a career, not the other way round.

If I had to, I would [move away for work]. But I would still keep in touch with me mam and dad and stuff … Because you're not allowed to work in your area [in chosen profession], because you'll know people in your area. (Gemma, 16, cares for physically disabled mother).

Gemma wanted to move away altogether before even thinking about starting a family. Quite a few of the respondents interviewed by Henderson et al. (2007), both male and female, and middle and working-class, ended up staying in their home towns, having been similarly determined to move away, because they fell in love with a local person. However, they still viewed themselves as broadminded ‘cosmopolitan’ people rather than ‘localists’. Even if Gemma were to end up living close to her parental home, her trajectory would still be quite different from that of respondents interviewed by Skeggs (1997). They defined themselves in opposition to geographical outsiders, and put family before career. The idea of a ‘well brought-up girl’ who uses the young caring role to prepare for a life of caring for husbands and children was cited by disabled parents (Aldridge & Becker 1990) in the early 1990s. It would not make sense to those who participated my study who were also young parents. They saw their disabled relatives as having an active role in their children’s lives, rather than regarding the ‘burden’ of caring for those relatives as being comparable to that arising from looking after a child.

Aw, [my disabled brother] absolutely loves [my daughter]. Because, obviously, the chances of him having a child is quite low, so he really 217

takes her on. That's why I made him god-father as well. I thought it was quite special for him. Things like on father's day, as well, I think you can actually buy godfather cards now, so I think we'll get him a little present, and things like that. But he really loves her as much as she loves him, I think. It's nice. (Lauren, 24, cares for physically disabled brother).

[Disabled mother] always looked after [elder daughter] as a baby. I was quite young when I had her. And nothing was ever said. Social services were involved then, because I was so young. But nothing was ever said [by social services]. [My mother] was fine. She was happy and secure, and very, very capable of looking after children as well. (Pauline, 29, cares for mother with learning disabilities).

The young men who participated in the study were even more inclined towards individual independence, and were resistant to early marriage and young fatherhood.

Interviewer: What do you see yourself doing at age 25? Respondent: Hopefully, in a stable job and that, by then. In my own house and stuff. Interviewer: And do you think you'll have kids and stuff? Respondent: Don't know, not at 25 like! (Jack, 18, cares for physically disabled grandmother).

Only Tom explicitly stated that he would make a better dad as a result of having been a carer. Moreover, their non-carer siblings’ lives were often in a far worse state than their own in terms of readiness for an independent, breadwinner role. Gemma had an older brother in prison and two brothers of a similar age, also carers but to a slightly lesser extent, whom, she felt, had a less developed career plans than she did. She attributed both her caring role and her careermindedness to her willingness to be inspired by her father, the main carer, a 218

highly motivated individual, who had formerly owned his own businesses, and shared her love of archery.

My dad says I'm better at doing things [around the house] than my brothers because I get to do a lot more [outside of the house]. So I understand why I have to do [domestic work], well I don't have to do it, but why I don't moan as much. But my brothers moan because they don't want to do [domestic work], and they don't get as much as me, but they don't want to … They don't want to go to archery, and they don't want to go to cadets ... Some weekends, they don't want to go to scout weekends, but my dad pays for it anyway, so they get this life experience and stuff. I love cadets, me. (Gemma, 16, cares for physically disabled mother, my emphasis).

Gemma saw herself as someone who should have been a boy, and her father, the primary carer and nurturer, could be regarded as a challenger to gender stereotypes of the type advocated by Philip (2003), and discussed in Chapter 2: Context. Being a young or young adult carer can be seen as part of a wider strategy for coping with the family’s negative situation, in which the young person engages with the older generation as an asset, rather than regarding them as antagonists.

Interviewer: So, what do you think would be different if your dad wasn't there then? What do you think you'd have to do differently? Respondent: I'd have to take more on than what we're already doing. Interviewer: And would that be just more work. or would it be more responsibility as well? Respondent: More responsibility and more work. (Gemma, 16, cares for physically disabled mother). Gemma’s is not an unproblematic strategy as the negative situation still persists, and may involve reciprocating the parents’ ‘bribery and cajolery’ with domestic work. However, it is not the worst strategy either. Refusing to engage with the family’s situation, and getting into conflict with parents, can 219

be a far worse option. They may be the only people looking out for you, for example, by being prepared to visit the college and stop their child from getting expelled for non-attendance, as Pete found out through his siblings. My brother, we were brought up the same, only he left home when he was 16, which was the only difference between us. And he's still very shy and reserved, and me, I've been nice, bright, bubbly. And [the young carers’ project] gave me that much extra [confidence] to speak my mind. My brother, he was taught he needs to do certain things [in the house]. I was always left, because I'm the youngest in the family. And my brother was always there, and he would always begrudge that he ‘had to’ do it. But me and me [disabled] sister, we got on, we're like friends … And my older sister, she just begrudges the attention that [my disabled sister] got. My oldest one was 10 when [my disabled sister] was born. So I think now its one thing for me dad and my [disabled] sister to say, ‘I'll take these tablets, I'll take these ones’, things like that, because there's no conflict in the house whatsoever. So my [older] sister's living in Ireland, my brother, I've got no idea where my brother is to be quite honest with you. (Pete, 21, cares for physically disabled father and sister, my emphasis). Pete’s statement that his brother is still very shy and reserved suggests that they kept touch until fairly recently, and he saw little sign of personal growth, despite his brother having ‘escaped’ into the world. As the elder sibling, his sister was presumably expected to do as much, or more than, his brother, but, according to Pete, it was not this that became an issue for her. Rather, it was sibling rivalry. Hence, he was comparing her with his brother to highlight that his brother was the only one who minded being told what to do. In contrast, his sister’s feeling of losing out to a younger disabled sibling is relatively normal, regardless of whether the older sibling has a caring role (Opperman & Alant 2003).

However, Pete had stayed at home, and his caring responsibilities had grown, due not only to his father becoming disabled in addition to his sister. It was 220

also to him no longer being protected from domestic work as the ‘baby’ of the family, since his older non-disabled siblings had left. He had found that his tasks had become more manageable despite growing in volume. In a sense, the quality of the informal working environment had improved. Thus, ‘escape’ and ‘left behind’ may be inappropriate phrases to use in order to make a point of contrast between siblings in cases where one or more have left. The biography and relationship of the cared-for-person with one sibling will usually be quite different to those that they have with others. Pete had a close relationship with the cared-for person, because he was not told by his parents to carry out caring tasks. Gemma has a similarly close relationship with the main carer because she was told to carry out caring tasks, as part of a general pattern of allowing that main carer to influence her activities and views, on leisure and other aspects of her life. However, neither had siblings who could be considered better-off, in terms of their place within the family, or their life outside. Being female might make it more likely that people will be somehow nudged by their parents into a caring role, but it does not automatically follow that the girls are relatively worse-off as a result, or even that they are more likely to stay in that role long term. Gemma, for example, had a viable career plan that involved her moving far from home. However, one aspect of young and young adult carers’ lives that did appear highly gendered was the extent to which caring was an explicit influence on future career. Whereas the young men would link non-carer professions with caring, the women distanced themselves from any suggestion that their career choices of care work were influenced by their family caring experiences. This fits with Harriet Bradley’s (2005) research suggesting that unemployment is far higher among young women than young men, but is hidden behind categories such as temporary absence from work, part-time study, and not seeking work on account of caring for family. Meanwhile men, have a far better range of options to access or move towards the labour market. In particular, they are far more likely to engage in the option of selfemployment, which could potentially lead towards a more stable labour market position than that of almost any employee (Bradley 2005: p105). Even 221

within the category of ‘casually employed’, Bradley suggests that different levels of risks exist according to gender, class and ethnicity. Those from advantaged groups might deliberately use a strategy of pursuing high risk, high opportunity, short-term employment contracts, whereas those from disadvantaged groups can get no other work (du Bois-Reymond et al. 2001 cited by Bradley 2005: p109).

The following four quotations concern two young men who wanted to link career choice to caring, and two young women who rejected the idea that their career choice was linked to caring.

I can see where the restrictions [on services for the disabled] are coming from. It's not coming from the social workers. It's coming from the accounts department. I find that if I [go into local authority accounting], maybe I can change something … No matter where you work in a company you can always make a difference somewhere along the line. (Pete, 21, cares for disabled father and sister). [I’m studying] multi-media computing … My final year project, I’m doing for [young carers’ project]. So that should be something else to help them out. (Tom, 20, cares for learning disabled brother). Respondent: I think you’re coming along the lines of, ‘[I chose the care work course] because I’ve had experience with [family caring]’. But I can’t honestly say that’s the reason I did. Maybe it is. But I just found I didn’t actually know what I wanted to do. I trawled through all the courses, I just thought, ‘I can do that’ … Interviewer: Did you consider anything that is completely removed from caring? Respondent: Journalism, but I never got round to doing that. (Pauline, 29, cares for learning disabled mother).

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Interviewer: What field within [care work] will you go into? Respondent: Definitely not disability. It’s too close to home. (Lauren, 24, cares for physically disabled brother). Pauline’s quotation fits with the popular assumption that both the caring role and the caring professions are natural for women (Lynch 2009), and therefore that the caring role does not need to be the factor leading individuals into the caring profession. However, the really interesting point of contrast between respondents of different genders is where Pauline stated that journalism, the career she would have liked, but was not in a position to take up, was completely removed from care work. It could be argued that journalism is the ideal profession to promote the interests of disabled people and carers through sensitive reporting of activities such as sport and politics.

Pete and Tom, in contrast, felt able to try to pursue lucrative career options that are not obviously related to the generally underpaid and undervalued caring professions. However, they also thought that they might find the power to change the position of disabled people and carers. They both talked about exercising creative power (Hooks 1984) in relation to both their career choice and their broader social cause. It is through this mechanism, the gendered labour market, rather than gendered family roles, that gender inequality between siblings in families affected by disability may have the biggest impact. There is no way of knowing the extent to which the aspirations expressed by the two young men quoted above would be actualised in the future.

One final difference between the genders needs to be mentioned, which is that female young and young adult carers were more likely than males to mention having been bullied or negatively targeted at school because of their family situations. The targeting of Lucy has already been discussed. She had been actively bullied to the point that a disability organisation had had to be brought in to the school to correct misconceptions held by other students.

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Meanwhile the young men who participated in the study stated categorically that they had never been bullied for being a carer. They had, in many cases, been surprised by the helpfulness of others. They had had problems in romantic relationships, and some had been disappointed by their friends’ lack of understanding. Some had responded by breaking off relationships with friends, because they felt that they could not trust them to react well to their being a carer. However, it would appear that they had at least made the choice to cut those friends off, rather than have those friends drop them.

In contrast, Gemma had been rejected by her friends and forced into conflicts at school, by other pupils’ prejudices.

I haven't been going out much with me mates. Even when I was little, I didn't go out much. We'd go up the fields to play football or something. But as they got older, they started to become totally idiots, and that, so I went apart [from them] after they changed. So, … when I went to the seniors, left the juniors, I didn’t see my mates anymore. And when I did see them, they had their mates, and they told us to, basically, nick off … A couple of students were complaining about me jacket, because it smelt like a dog, basically! … Me dad was screaming at [the teacher following the jacket incident]. She says, 'No'. [I said], 'Fine, put me in with the mentors or put me in with senior management, I don't care. I'm not going back in your classroom'. (Gemma, 16, cares for physically disabled mother).

This possibility that girls might be being bullied and forced out of education by their peers contradicts the view held by some practitioners that it is primarily male young carers whose education and peer group experiences are negatively affected by being in this role. At the very least, girls should be seen as being equally at risk of being bullied. The mistake of assuming that girls are less as risk is a consequence of focussing too narrowly on educational participation at age 16, particularly the issue of whether the family of origin is a barrier to such participation. A broader perspective is required. This perspective would take into consideration the likely long term consequences 224

of negative school experiences, in the context of already having narrow life chances on account of one’s gender and social class. Assumption 4: Social class is not as important as it used to be. This assumption is illustrated by Blair's statement (see Chapter 2: Context) that the UK now consists simply of the 'haves and the have nots' (BBC 1999). The idea that young people might still have different aspirations, or approach life in different ways, depending on their class background, as documented by Willis (1977), was dismissed as outdated by proponents of the New Labour project. Young working-class people were to get a ‘hand up’ to the brave new world of predominantly white collar jobs. There was going to be no government support to expand the blue collar job market, regardless of how well such jobs suited some people’s skills and inclinations.

However, current research suggests that social class is still relevant to young people’s schooling and transitions to adulthood. Macdonald et al. (2005) followed the experiences of working-class children who wanted to train for ‘traditional’ working-class jobs requiring manual, practical and informal social skills, rather than formal education and qualifications. They concluded that these children’s experiences were comparable to, but worse than, those of similarly orientated working-class children in the days of Willis’ (1977) classic study. The purpose of schools is now entirely to deliver formal education and qualifications, as if the children were on a production line. In the past, it was accepted that children went to school not only to acquire assessment-based accreditations, but also to grow up, develop relationships, and receive informal education (Rogalty & Taylor 2008).

Although a majority of respondents were from working-class backgrounds, there was little evidence that their disputes with school were a direct result of conflict between social classes. It was more common that such disputes would follow from a short term crisis that caused the child to miss school, not do homework or come in badly dressed. Overall, working-class young and young adult carers who took part in my study had not been as badly treated by teachers as had respondents interviewed by Macdonald et al. (2005). Most 225

had an instrumental view of education as a means to achieving their goals, and had achieved at least some level of accreditation through engagement with the education system.

However, many of the working-class participants in my study had struggled with the mechanistic nature of school and college teaching, to the point of dropping out of education at least once. As in many other settings, a crisis in relations was triggered by the feeling that professionals were unengaged as human beings, rather than by specific practical problems. Respondents found some interactions between teachers/lecturers and students to be unprofessional and disrespectful.

My tutor used to make sly comments. There was a lad who came out, that he was gay, and he wanted to speak to the tutor because he was having a mixed-up head. He was from a strong Catholic family, so he decided to speak to the tutor, and I think it was a couple of weeks later that the tutor made a sly comment … [Someone should] teach [the tutors] what confidentiality is at the end of the day! (Pete, 21, cares for physically disabled father and sister).

The incident did not directly concern Pete, and it had happened two career choices ago. However, he saw it as relevant to his account of his own career, as lack of professionalism from tutors was one of his main reasons for dropping out of that course.

Working-class respondents tended to say that they were happier with their new career choice, as compared to the route that they’d dropped out of. However, it might have been more economical for them to complete the course they were on, and then do some type of conversion course or specialism. The middle-class respondents who participated in my study had tended to do the latter.

Some of the middle-class respondents also expressed feelings about their teachers’ and lecturers’ lack of engagement with their students (see Daniel’s 226

comment above). However, they were less likely than working-class respondents to enter into conflicts, and drop out as a result of disappointing exchanges. This may have been partly to do with family class background, in terms of whether their parent or guardian had experienced further education themselves. It would appear that middle-class respondents’ parents were able to subtly prepare their offspring for the reality of educational hierarchy, whereas working-class respondents had no such context.

Moreover, there was evidence that, for working-class respondents, parenting felt supportive if it backed up their offspring’s decision to drop out, while generally agreeing with the principle of education. If I've wanted to do something, my parents have encouraged me. If I've started to get bored with something, they'll say, ‘Give it a break and then go back to it’ … Regardless of what happened, they didn't really care. They were just encouraging me to go out and do my best, and as long as I had funds, ‘Do what you want’. (Pete, 21, cares for physically disabled father and sister, my emphasis). My nan asked what I wanted to do at university, and then she said, 'What's that?’ My mum said, 'What job is that getting you into?’ My nan said, 'You're going to university, that's enough' … [My nan] never pushed me to do anything, [when I quit my postgraduate course]. She was just, 'OK, it wasn't for you, you felt that way' … I've just recently finished a qualification in personal training. I can’t think of a career I want to dedicate to. I'm not steaming ahead into working in a gym… Building up a client base through schools or privately – I do get boxed in. (Ryan, 25, cared for terminally ill grandmother, my emphasis). Ryan’s grandmother knew little about the specific benefits of different educational routes, but had a general sense that a university education was a good idea. She was able to respond to how her grandson felt, but was hardly in a position to give him any specific advice or encouragement not to drop out. 227

Ryan had eventually decided to retrain into a vocational occupation, and work freelance. However, his education had not been in vain, as he had acquired the articulacy and confidence to go out and get organisations such as schools to be his clients. However, he did this against a backdrop of fear about becoming vocationally trapped.

According to Pete, his parents would support him in whatever life choices he made.

Regardless of what I wanted to do, my parents would encourage me. I remember, I was 15, and I wanted to go for a drink with my dad, to the pub. We went to the pub, and the bloke said, ‘Can I see your ID?’, knowing full well I wasn't 18. And my dad said, ‘I'm buying the pints. Give them to me!’ There was just things like that. I used to go to Ireland on me own. In the summer holidays, I went to see my sister and that, and I remember there was someone saying, ‘Do you fancy coming to the pub with us?’ And I went in, and I got stopped by the bouncer, and he said, ‘You're not old enough’. I've never been held back whatsoever. (Pete, 21, cares for physically disabled father and sister). Pete’s parents took him to the pub at his own request, despite him being under-age. They also actively made room for him to pursue his career dreams. After many struggles in education, he was, at the time of the interviews, close to achieving his aspiration of becoming an accountant.

It would seem that social class background can profoundly affect young and young adult carers’ transitions, and contribute to educational drop-out. However, this inhibiting factor may be mitigated by working-class male carers having the support to try things out at their own pace. As a result, they can have more time to build social networks, and can often use these to access more options.

I'm training in accounts. I'm off to America for six months in February. It's just, the owner of the hotel [where I work], they've got a [inaudible] 228

in Las Vegas. I'm going over there for six months, just get some [accounts] experience. (Pete, 21, cares for physically disabled father and sister).

It was quite weird, I was in the pub one night and I saw me [current] boss there [whom he used to volunteer with]. And she says that they needed a male worker, because it was all female staff, and that building's still practically all female staff. In fact, I think there is only female staff in the building. So they wanted a male worker, so they could make residentials [for both genders]. So at least they can take boys and girls now. (Tom, 20, cares for learning disabled brother).

The above two examples relate to obtaining paid work, but there were similar examples of emotionally crucial friendships (Daniel), and educational support (Pete) following on from chance meetings. In contrast, working-class female carers appeared to face a much narrower range of choices, which often confined them to more obvious social networks within their families and communities (see Lucy’s and Pauline’s comments above). It may be that the girls are well-aware of their limited window of opportunity (Bradley et al., 2000). They may, therefore, be more likely than boys to seize the moment at age 16, and ‘reinvent’ themselves in the manner described by Clem and Sara (see Chapter 6: Findings from Interviews with Young Carers’ workers). Policymakers are right to be concerned about working-class young people, particularly young women, who miss crucial opportunities within ‘key’ chronological age ranges, but only because of the odds that are stacked up against them if they wait until they are of typical child-bearing age.

For middle-class respondents, in contrast, parental support included firm advice and guidance. Middle-class parents could draw on their own educational experiences, in order to guide and inform their offspring about how to succeed in education despite carrying caring responsibilities. For example, Lauren had ended up going into a similar highly paid care work related career to her mother. The latter had always known from first-hand experience what Lauren would need to do to succeed. 229

It was [in] her early 30s when [my mum] did the degree, so it'll be about 15 years [that she has been in her job], maybe a bit longer, I think 16 years. For a long time. She won't do anything else now – this is her career … [As a teenager] it was like, ‘Right you've done everything that you need to do [for your brother]. Do your homework’. I didn't have room to leave it till the last minute! I had to do it … No, she knew what she was doing. (Lauren, 24, cares for physically disabled brother, my emphasis).

Lauren was told to undertake caring activities for her disabled sibling, and Pete was left to decide for himself, which would appear to make Pete the unexploited one. However, being told when to stop assisting the disabled person, and concentrate on one’s own educational needs, may have greater impact. This did not happen to Ryan, for example, whose mother and grandmother accepted his choices, not understanding that a potential career requiring higher qualifications had been permanently dropped. It is far easier for a parent to prevent drop-out if they have experienced further and higher education themselves. Nor does a parent need to stay in touch with the worlds of education and work, as Lauren’s had, in order to pass on an educational advantage to their offspring. Daniel’s mother had been forced to abandon a high flying international career because of her illness, but knew how to update her knowledge, in order to advise her son. My mum got in touch with this man … He writes this book [where] you compare Bristol with Oxford, or whatever, what's their ... grades, what they're taught, and we used that, and we talked to him on the phone … And my mum was saying, ‘It would be better to keep your options open. Don't go for sociology,’ which is what I wanted to do at that time. (Daniel, 23, cares for chronically ill mother, my emphasis).

Such middle-class parental advice was authoritative and, in the latter example, based on systematic research. In that sense, the contrast with Pete and Ryan, whose origins were working-class, could not be more striking. 230

Nevertheless, all four of the respondents quoted above perceived their parents to have been supportive of their decision to pursue careers requiring higher education. The only significant factor separating the drop-outs from the successful students was a difference in their parents’ levels of knowledge of the educational system. This is a difference which is inevitably linked to social class, and it is best alleviated by supporting and encouraging young and young adult carers to take extra time over the transition to adulthood, rather than by trying to normalise the transition to adulthood along middle-class lines. Assumption 5: The main pressure on young and young adult carers is that of time. The assumption of the need for constant adult guidance also implies that young people should be continuously acting in prescribed ways, by getting educated, and building up a CV. Carrying out of a caring role is likely to impede, or interrupt, the actions prescribed to normal youth by the state. These prescriptions preclude consideration of the ways in which young and young adult carers might take the initiative and use time differently.

Young and young adult carers who participated in my study had been forced to approach education and occupation differently as a result of their caring responsibilities, especially during times of acute family crisis. Joanne’s was the most extreme example, as she had been forced to drop out of school before the end of compulsory schooling, and do her studying in a condensed form at a youth project. However, she now enjoyed a reasonably varied life, living with her boyfriend, going home to continue to help mother, pursuing a career in nursing, and volunteering at the same youth project. I'm not bothered – I'm not fussed really. I have my own time … most of the time [I’m free to see friends], but I don't really go out with them now. I just really stop in … Most of me friends are moved [out] now, so I just stay with me boyfriend … I just wouldn't want to [get professional carers in]. I'm just happy how I am. (Joanne, 16, cares for acutely ill mother). 231

Joanne’s narrative refuted the idea that she had lost her friends and other youthful experiences due to lack of spare time. Like Gemma, she suggested that, whereas her peer group had gone one way, she had made a positive choice to go another.

Albeit with notable exceptions, most respondents had reasonably varied lives in terms of work, education and structured leisure, with the only ‘loss’ being that they spent relatively little time ‘hanging out’ with their friends. This stands in contrast to the pattern among the population of known young carers under 18, who have a high likelihood of being NEET (Heyman & Heyman 2013). The difference is hardly surprising, given that known young carers have generally grown up experiencing long-term disadvantage in families affected by long term disability (Newman 2002). In contrast, all but two of the young carers who participated in the present study cared for relatives with late-onset disability. This difference highlights yet another reason why looking only at young carers who are easy to identify can generate misleading impressions about the range of coping strategies operated by families affected by disability.

Young and young adult carer participants in the present study were particularly restricted in terms of friends spending time in their family homes. However, this restriction did not arise from embarrassment, but from their own caring responsibilities. The main factor was concern that their friends’ presence would impact on the smooth running of homes in which care was taking place. This would have been an issue regardless of whether the young person had a caring role.

If my mum and dad were coming in late, and they were tired, they wouldn't want other people like being around. Just because they'd had a long day at work, and then coming home and seeing to Peter. (Lauren, 24, cares for physically disabled brother).

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However, their extra-curricular activities were often linked to their families and core social networks. In consequence, the family might be seen as an enabler trying to make up for being an inhibitor.

There was a particular child in our class who caused a lot of problems, and there were quite a few incidents, em, to do with me and him, and he used to bully this other girl as well, who had a brother with cerebral palsy. I don't know whose idea it was, whether it was the school or either of the parents, and then they arranged to get [someone] in to do some sign language and everybody loved it. [The bullies] really, literally, all changed from then. A couple of us were in a church [with our families], a couple of us ended up going along to her group there. So we did a couple of shows and things, they were like songs, you'd sign to songs and you'd do, like, a little show. So we got to meet some deaf people through that. (Lauren, 24, cares for physically disabled brother, my emphasis).

Some special activities, such as trips to a festival for young and young adult carers, were organised by young carers’ projects. However, there was generally no difference in day-to-day educational and extracurricular activity between those who had attended young carers’ projects and those who had not. Instead, projects were seen as offering support in relation to key tasks. These tasks included putting together one’s first CV in a way that would present the caring role in a positive way, choosing a career, and getting paid assistance into the house for the first time. The projects were also cited as important for providing opportunities to meet fellow young and young adult carers in order to destress. Respondents seemed to be unaware that projects had a remit to stop them becoming NEET (Not in Education, Employment or Training) in the future. They had quite individualistic attitudes, which made it hard for them to view themselves as members of a high risk group. I’m not really bothered [about peers who don’t do any housework], 'cos it’s their life at the end of the day, and they have to learn. I'm quite an

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independent person. I like to do things on me own anyway. (Gemma, 16, cares for physically disabled mother).

Gemma saw herself as experiencing events that have to take place in all young people’s lives, and it was only the ordering of events that was unusual in her case. Only one respondent felt overwhelmed by his caring responsibilities to the point that he excluded all other activities, both now and in the future. As noted above, John did not even hope to go out in the evenings, and looked back wistfully to a time when he had been able get out each day.

[I would prefer] like I used to, like go out during the day and come back on a night-time, and look after her during the night … I wouldn't like to think [about the future] at the moment! I wouldn't really know. I'm just going to take each day as it comes … I've had some [careers] advice, but, like I say, I've just been looking after me nan a lot. I've had opportunities to go back to college, but I just haven't took them because of me nan. (John, 23, cares for physically disabled grandmother).

in the past, John had managed to continue at college while caring, and he had not ruled doing that again if home-helps could finally take over some of his caring tasks. He was finding it very hard to see, or plan, a way forward, even in terms of looking for a stress-relieving activity for the immediate present. However, he was notably atypical of the sample, because he was completely estranged from his parents and had disabilities himself.

Every other respondent was either in the process of starting or studying on a course, or working/volunteering in the area for which they had trained. As mentioned above, in the case of Gemma, young and young adult carers often take part in highly structured leisure activities in order to do more with less time. In consequence, they may end up with a greater breath of meaningful experience than almost anyone else their age. This was most dramatically the case for Pete. 234

With Young Carers' I've got my Duke of Edinburgh Award. I've done kayaking, skiing. I've been in Egypt, built the school house in [East European Country] for a small community. Things like that. I wouldn't imagine it. A lot of people wouldn’t imagine it. My friends come to me and say, ‘You’ve done quite a lot. It's quite hard to believe’. And my history has allowed me to do this, and services on offer have allowed me to do this … I don't begrudge [caring] at all. I don't mind helping out. It's helped me mature, beyond me age and that. I've only been just recently able to act myself, and be my age. (Pete, 21, cares for physically disabled father and sister).

Pete attributed his being ahead in his development to the caring role itself, and valued being able to access high quality structured activities as a result of being eligible for a Young Carers’ Project. Nevertheless, there is a touch of wistfulness in the statement that he now felt ‘able to act myself, and be my age’, which he had been previously unable to do freely. This comment implies that, in an ideal world, everyone would be able to ‘be’ the age that they are ‘supposed’ to be, i.e. conform to cultural norms for their age-group.

Middle-class respondents were less concerned than those from working-class backgrounds about losing ‘normal’ childhood to caring. However, this difference was probably not due to variations in day-to-day activity patterns. It was more likely to stem from differences in perceptions of what those day-today activity patterns meant in terms of abnormality. Middle-class respondents had relied solely on their friends and families for meaningful leisure opportunities, support and guidance. They had not relied on the input of young carers’ projects. In consequence, they were perhaps less likely to feel that their family situation had created a need for intervention. We used to go when we were younger – me dad had quite a well paid job – we'd go to Florida, to the theme park. And [my disabled brother] would absolutely love to go there again … I think [caring] has brought us together as a family, like, with or without my dad, [who had 235

subsequently left the family]. It doesn't matter. It has had a positive effect. So I've been grateful to learn about all of this [on her care work course], because it's given me a different perception on it. (Lauren, 24, cares for physically disabled brother).

Lauren may have been looking back at her past with a certain amount of nostalgia because her brother now lived independently, and could not afford to go to Florida, while her father had become estranged from the family. Nevertheless, she was talking about a positive youthful experience that started and ended with the family. Lauren had not had to rely on a specialist young carers’ service to frame her experience, or mitigate her loss of ‘normal’ childhood.

The difference between working-class and middle-class respondents is not one of time pressure, but of material resources. Lauren did state that her younger self might have liked to attend a young carers’ project had she known at the time that they existed. However, she was thinking about a need to have someone to talk to, rather than for additional youth activities.

Respondents of all social classes felt themselves to be highly adept at handling time pressures. For example, Ryan. who had working-class origins, had taken on the heaviest caring responsibility of all the respondents. He had acted as lone carer, with no professional support, to his terminally ill grandmother. However, he had been surprised by how easily he was able to manage the time practicalities, even though he had found relationship aspects of caring for a family member harder to handle.

She was getting direct payments [which I got paid out of], but it wasn't much, so I got a part time job. It was perfect - extremely flexible. I'd be away maximum a few hours … Being the age I am, and having other experiences as a support worker - I'd done so much of it that, when it comes to my nan, it wasn’t a chore. It wasn’t strenuous. It was handleable. It was easy. [But] being a family carer is mentally taxing. Being a professional, you take a professional persona naturally. 236

Whereas at home … it's someone you know on a very personal level. (Ryan, 25, cared for terminally ill grandmother, my emphasis).

Finding a few hours to go out and earn some money for yourself might not sound like much of a luxury, but to Ryan it was an unexpected bonus.

To summarise, many young and young adult carers plan their time formally, rather than in the casual manner that is considered ‘normal’ for youths. However, they do not necessarily miss out on ‘normal’ youth experiences. They are surprisingly good at recognising the benefits of such activities, and identifying opportunities that fit in with their time constraints. Nevertheless, as in the case of John, opportunities will not be taken up unless the carer is able to cope emotionally, given that any activity, and even the planning of an activity, can impose additional stress that the carer may not feel able to cope with. These stresses are compounded if the young or young adult carer is from a family who have limited material resources and lack knowledge about educational pathways. Assumption 6: Use of a young carers’ project leads people to view other services more favourably. One of the reasons for the establishment of state-funded young carers’ projects was to provide guidance to a group who are considered to be more likely than other young people to face problematic transitions to adulthood (Heyman 2013). However, this was by no means an easy task for the project teams, not least because the young people themselves did not see themselves as disadvantaged, or in need of guidance. They mostly regarded the projects as a source of advice and information, rather than of guidance, which would imply a challenge to young and young adult carers’ ability to make their own choices.

Almost all of the young and young adult carers who had had contact with disability professionals such as social workers had complaints about them, regardless of the extent, if any, of their use of young carers’ projects. Daniel and Pauline, who had not used young carers’ projects, went so far as to 237

suggest a deliberate lack of professionalism. Pete and Lucy, who had used young carers’ projects for many years, were equally scathing. Daniel believed that social workers were not complying with government policy and the law. No social worker, or anyone else, has come up to me and gone, ‘Do you need any support?’ Nobody has ever done that, and I thought that was the whole point of their job … That money that the Labour Government brought in to support people, the local authorities don't necessarily use in a useful way ... And they'll be, like, ‘That's the law, but we don't have to tell you’, and that's the sort of attitude these people take. (Daniel, 23, cares for physically disabled and chronically ill mother, my emphasis). A young carers’ project might have helped Daniel see a context for the lack of help from social services, but it would probably have brought him to the same ultimate conclusion about there being little help for those in genuine need. Daniel also made it clear that their family could not cope without the services they were being refused. As a result, they had decided to actively seek out a more generous local authority. [After] nearly a decade of the same treatment, it's, kind of, try and move somewhere else. There's reports and analyses of different regions in the country - which council has a slightly different approach. So, really, we can try and change the situation. (Daniel, 23, cares for physically disabled mother). Daniel understood government policy, and knew how to get information about local authority performance. He realised that he and his brother would not be able to continue their education without access to services designed to prevent them needing to care full-time. He was resistant to the idea of accessing the help of a young carers’ project, because he insisted on being in control of what services were provided. It was not acceptable to him that services could have assessed his needs, and then made judgements about what he needed. 238

Pauline had not accessed specialist carers support either. Like Daniel, she had felt that she knew what social workers were supposed to do, and that the problem was that the required services were not being delivered. To be completely honest, I don’t have anything to do with [social services]. I’ve tried not to. It’s funny. They’re told not to be judgemental, and to go in with all this systemic thinking, and stuff like that. And it doesn’t happen in my experience. Whether it’s because they’re hardened, and they see lots of things and that actually counterbalances what they’re taught, the fundamentals of it. But what I’ve seen, they are very confrontational, and you can just see their heads ticking over, and thinking, ‘What’s going on?’ (Pauline, 29, cares for learning disabled mother, my emphasis).

In relation to the core category for the analysis presented in this thesis, the above quotation provides a particularly good example of young and young adult carer resentment about what they saw as the fundamentally pathologising tendency of services other than specialist ones for young and young adult carers. Pete and Lucy had accessed young carers’ project. They had initially been open to putting themselves in the hands of social services, and to being assessed to see what support was needed. However, they had both come to the conclusion that social services were capable of delivering effective help.

Social work, like what my sister was receiving, she received nothing off them for years, because they couldn't decide what help she needed. They knew she needed help. They just couldn't decide if she needed one of two packages, and if they could see that she needed one of the two, they just couldn’t make up their mind which one. They could offer some help, but they didn't, and that put more responsibility on me. (Pete, 21, cares for physically disabled father and sister).

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I was telling [some social work students], what [social services] haven’t done for me. It’s true, they haven’t. A social worker came - she sat on that chair. She spoke to me mam - fair enough, she spoke to me mam which I thought was good - but I also wanted to put my input. [The social worker] said, ‘Lucy can you shut up, you’re just a child?’ … [The social worker] said, ‘Personally, I don’t think we can help you’. (Lucy, 19, cares for physically disabled mother and sister).

If anything, the quotations from Lucy and Pete, who had received young carers’ project support, are more damning of the social work profession than are the quotations from Pauline and Daniel. They had not received young carers’ project support, but had started out with hopeful ideas about what social workers ‘should’ do from other sources.

Unlike the other young and young adult carers who participated in my study, Tom and Jack did not have any direct complaints about professionals. However, they stayed out of the room when the conversation with social workers did not concern them directly.

Me mam deals with that, something to do with like social services, something like that. I mean, she offered counselling for us for a while … It was like a 6 week course, and, I mean it, was worth doing - got a lot off my chest. (Tom, 20, cares for learning disabled brother).

John had also had positive experiences of both adult and child social services. He had disabilities himself, and had been removed by social services from his mother to his grandmother as a child. Some of the most enthusiastic young carers’ project users were also the most angry about their experiences of school and social care. Three very regular young carers’ project users, Pete, Lucy and Tom, were building their lives around trying to deal with the issues they had experienced. The earlier quotation from Pete, a past user of young carer project, on his reasons for becoming an accountant is the most obvious example. Lucy also stood up for 240

disabled people in general on a day-to-day basis, as documented in the second quotation below. She saw little point in engaging with disability services. [The social worker] said, ‘Personally speaking, I don’t think there’s anything we can do with you’. [I said], ‘Get out again then’. I told [the young carers’ project worker] this, and she was, like, ‘You didn’t tell a social worker to get out?’ I said, ‘I did Jayne, if she’s not going to do anything’. I do everything meself. I never ask for a cleaner. I’ve never asked for help … Anything we want [for my sister], I find out off [the young carer’s worker] what sort of things I can get. (Lucy, 19, cares for physically disabled mother and sister). Lucy’s account conveys a tone of amused acceptance in the project worker’s response. She had a long history of attending, and then volunteering for, her young carers’ project, and a willingness to let them to get involved in many aspects of her life. Nevertheless, the quotation shows that her view of social work was non-negotiable. There may be implications here for work with other ‘hard to reach’ and ‘service-resistant’ groups.

In contrast, some of the young and young adult carers most satisfied with support from professionals had been the ones who had had no contact with specialist young carers’ projects, as in the case of John

Some people, I thought, just didn't care. But now I've realised that most people do care. And when you need somebody, they're always there for you. Me auntie, social services have been there quite a lot. Care Link's been there a lot when I've needed them. Quite a few people – the doctors. (John, 23, cares for physically disabled grandmother).

In summary, there were, as might be expected, angry people who had not had young carers’ project support, and non-angry people who had had such support. However, there was also the reverse. The experience of young carers’ project support does not seem to have been a major determinant of 241

attitudes to other services, at least for this group of respondents. Young and young adult carers are likely to learn over the course of time that their situation is too complex to allow any one organisation to single-handedly change their lives. By this age, a young carers’ project, if being used at all, becomes a source of additional stress-relieving structured activities, an arena for political activism, a place for offloading stress with people in similar situations, and somewhere to get information about, or access, to very specific forms of support.

As well as being led by their own experiences, respondents who had previously used young carers’ project were also keen to distance themselves from their childhood vulnerabilities. Young carers’ projects were seen retrospectively as having had a major role in boosting their younger selves’ confidence, and connecting them to other services. However, former young carers’ project users opposed the idea that services could have such a role in relation to their young adult selves. They had moved on from the position of being vulnerable, unassertive children, even if the volume of their caring role had increased.

When I was younger, I was, for some reason, against me [disabled] brother apparently, according to me parents. But I suppose any sibling's like that, you know at a young age, when you know someone else's getting all the attention. … Eventually I got used to [my parents’ constant hospital visits]. But the idea of it [bothered me] at first, thinking, ‘What's going on?’ … I suppose I know what [young carers] are going through, you know, like when people will turn around and say, ‘You don't know what I'm going through’. You can relate to them though, because you've been through the same thing. (Tom, 20, cares for learning disabled brother, my emphasis).

Tom, like Pete, whose positive experiences with a young carers’ project were quoted above, still volunteered with their project after they had left it. At the time of the interviews, Pete had a much greater caring role than he had had in 242

the past. However, both considered themselves to now have the ability to cope effectively with their caring roles whilst getting on with their own lives. The use of the past tense at the end of the above quotation from Tom is particularly interesting. Equally significant is the vividness of his description of his past self’s vulnerability, as a very young, unknowing boy, sitting at home without his parents, and in need of service support to help him make sense of the present.

7.6: Chapter summary and conclusions The interviews with young and young adult carers showed that they mostly, although not entirely, rejected the loss-of-youth hypothesis held by many practitioners. Most young carers’ workers expected parents to take responsibility for mitigating the young person’s caring role, and to encourage them to complete the child-adulthood transition within ‘normal’ time. As shown in the last chapter, many of these workers felt parents should sustain the template of authoritative parent-dependent child, and take responsibility for ensuring that their child completed formal education in a standard time-frame. In contrast, the young and young adult carers who participated in my study saw benefits to themselves from the caring role, not just in terms of learning from the caring experience itself, but also in terms of developing closer than ‘normal’ relationships to members of the older generation.

Young carers’ workers tended to see the negatives of being a young or young adult carer as outweighing the positives. One reason for them taking this view may have been because they were unable to step outside of the normal paradigm of authoritative adult-dependent child, and appreciate the realities of the young and young adult carers’ situations as the latter saw them. This sort of mismatch resulted in the latter’s perceptions being misunderstood or ignored, and their needs not being met. This failure of systems designed to support them may have resulted in high rates of educational drop-out, emotional isolation and, particularly for girls, restricted social networks.

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It is impossible to know what young and young adult carers might have given up trying to express, even to a researcher, having tried and failed so many times to explain their perspectives to professionals and outside family members. By encouraging respondents to reproduce conversations that they had had within their informal networks, I tried to mitigate the artificiality of the interview. However, it should be recognised that their constant story retelling may have had an impact on how fully young and young adult carers were able to express the reality of their experiences, regardless of whether they were talking directly to me or relating past conversations. The phrase ‘so bureaucratic they don’t even know that they’re bureaucratic’ is often applied to professionals, but it could also be applied occasionally to former young carers’ project users, who almost become part of the bureaucracy in their battle against the bureaucracy. This study may, therefore, be full of understatements. Nevertheless, it at least it begins to address the relationship between personal incidents, such as educational drop-out, and historical trends, like the increasingly mechanistic nature of education (Macdonald & Shildrick 2005), which impact particularly on young and young adult carers.

Practitioners mostly prefer that parents avoid any change to the fundamental relationship of authoritative parent-dependent child, so that every disabled parent can order their wavering child back to college. In contrast, the young and young adult carers whom I interviewed saw positives in the caring role. The benefits they identified derive not just in terms of learning from the caring experience itself, but also from developing closer than ‘normal’ relationships with members of the older generation. However, the disadvantages of having a caring role which young and young adult carers identified tended to outweigh the perceived advantages. This may have be, at least partly, because so few people are willing to step outside of the normal authoritative adult-dependent child paradigm, and hear the realities of young and young adult carers’ situations as they see them.

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Chapter 8: Discussion

8.1: Introduction The study discussed in this thesis addressed the following two overarching research questions: Research question 1: How do young and young adult carers see the nature and value of their relationships with older generations to have been affected by their caring role? Research question 2: How do young carers’ workers’ perceptions of the impact on relationships with older generations of being a young or young adult carer differ from those of these carers themselves?

The findings chapters have provided an analysis of the study data in relation to these questions, in relation to contrasting views of the impact of being a young or young adult carer on education, personal development and the ‘problem’ of being a NEET. The findings chapters were organised around the selected core category of pathologising versus normalising young and young adult carers in terms of their personalities, family functioning and developmental prospects. As noted at the end of Chapter 5: Methodology, the Discussion will provide an analysis of the wider societal context around which this issue was played out (Bertaux 1981). Social class, gender, and the personally and politically mobilising impacts on young and young adult carers of being pathologised instead of supported will be considered.

Young and young adult carers mostly normalised their experiences, focussing on positive impacts of being in this role. The positive impacts on their education, personal development and careers of being a young or young adult carer which they identified often involved the discovery of creative new ways to relate to older generations. Such discoveries allowed them to increase selfefficacy in their interactions with adults, through being able to assert their own frames of reference and time-frames for managing tasks. The problems which 245

they identified did not relate to their mental well-being or developmental progress, the issues raised most frequently by young carers’ workers and other authority figures. Instead, they were most concerned about here-andnow problems, particularly isolation from peers who had not had their experiences, and the inappropriateness of education, social and health services in relation to their needs for support. Young carers’ workers, overall, expressed more ambivalent attitudes to the impact of being a carer on a young person. They recognised that young and young adult carers often showed greater maturity than their peers. However, doubts were expressed as to whether such differences resulted from the experience of being a young or young adult carer, or caused a particular sibling to be selected for the role in the first place. Young carers’ workers did not pathologise the role of young/young adult carer in itself, but identified many vulnerabilities which they believed could place such young people at risk. These risks included being exploited or even abused, missing out on supposedly critical experiences of young adulthood, and getting trapped in a caring career trajectory which they might not have otherwise chosen.

Despite such relatively small differences in starting assumptions between young and young adult carers and young carers’ workers, the former expressed more or less universally positive attitudes towards the latter. Young and young adult carers contrasted the helpful, supportive attitudes of young carers’ workers to the rigid and hostile approach, as they saw it, of most nonspecialist support workers such as social workers, teachers and health care staff. Young carers’ workers sometimes expressed not dissimilar views, for example, concerning the inflexibility of schools and colleges which would sanction young and young adult carers for not fitting to their timetables, instead of trying to assess and adapt to the constraints which the latter had to work round.

The present chapter uses the findings already outlined in the two preceding findings chapters to discuss the extent to which this research project has

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addressed the issues and gaps identified in the young and young adult carers and carers literatures reviewed in Chapters 3 and 4.

Key findings will be framed in terms of important debates on intersectionality, the nature of youth rebellion against the mainstream, the potential benefits and costs to the individual and society of such rebellion, whether the relationship between family carers and society are essentially exploitative, and the theoretical desirability of replacing family carers with state employees. The nature of the topic means that a wide range of literatures must be drawn on, in order to position the present study in relation to existing knowledge. In addition, as pointed out in the findings chapters, the research was undertaken in a world in which respondents themselves were aware of debates and controversies, for instance about whether young people should be carers, how much support the state should provide. Hence, the published literature is itself part of the social context of the study. For these two reasons, I opted to interleave the review of my own findings with analysis of previous studies. Finally, the chapter will offer a reflection on methodology, framed in terms of key methodological debates in the literature.

8.2: Discussion of findings in relation to intersectionality A major challenge which needs to be made to current literature arises from the tendency of those writing about young and young adult carers before about 2010 to treat different age groups as homogenous. Subsequently, there has been a recognition, particularly in Australian research, that young and young adult carers, as they would be currently referred to, are a heterogeneous group. However, this work lacks meaningful analysis of how the supposed negative impacts of caring might differ for different subgroups. There has been little analysis of the impact of social class on the circumstances of young and young adult carers, and little consideration of family dynamics as a variable factor.

The present research was based on the assumption that young and young adult carers are a highly heterogeneous group, in terms of both intended 247

destination, and distance travelled. Moreover, unlike in previous generations, age norms for various aspects of child-adulthood transition have become highly variable, so that comparisons with non-carer young people involve moving targets. Relationship formation, having children of one’s own, establishing an occupation and acquiring a home no longer have a set order or a standard time-frame. Young and young adult carers often benefit from this ambiguity, as they no longer have to present a delayed transition as a case of having been ‘held back’. They, can, instead discuss their family caring role as part of a portfolio of activities that they have spent their lives juggling.

Did the sample meet my aspiration to fully reflect the ways in which young and young adult carers are heterogeneous? It is not possible to answer this question conclusively without knowing the distribution of young and young adult carers in the population with respect to relevant demographic and personal factors. However, the heterogeneity of the sample is still worth considering. Apart from one respondent who was of mixed race, and had had little contact with his ethnic minority father, all of the young and young adult carers who participated in this study were White British. Other than in this respect, they were very diverse. Some had been born into a family with two parents, and others to single-parent families. Some cared-for people had been disabled since birth, whilst others had developed late onset illnesses or disabilities. Some were middle-class, some upper-working-class, and some raised in workless households. Some had large family networks, but others had been brought up in isolated family units. Their use of support services had ranged from building their lives around helping the young carers’ project that had formerly helped them, as in the case of Tom, to actively rejecting professionals, even from within mainstream services, who had tried to offer support, as Daniel had. When the caring role intersected with these characteristics, caring tended to impact on the negotiation of key relationships for transition in different ways. The clearest intersectionality was between gender and young/young adult carer status. All of the girls felt that they had been targeted, or made to feel negatively different in some way, by their non-carer peers, because of their 248

family member's disability. In contrast, most of the boys felt that their being a carer had led to them being treated with relatively high levels of kindness by others. This difference may be linked to the increasing acceptability of boys spending time at home (Henderson et al. 2006), which has not been fully matched by an increased tolerance for young females in the public sphere (Bradley 2005). Boys staying at home to look after parents can be seen as an extension of the now acceptable stay-at-home geek role. Girls living ‘abnormal’ home lives tend to be targeted for the same reasons that they were in the late '80s to early '90s period studied by Skeggs (1997), for example for being ‘impure’ girls from 'broken homes'. Had I had a bigger sample, for instance more carers who were also disabled themselves, I might have been able to depict the intersectionality of being female and a young or young adult carer with other types of disadvantage.

There was also an intersectionality between carer status and social class, although there was no sign of overt discrimination against working-class carers compared with their middle-class counterparts. Most respondents still relied on the cared-for person for support, advice and encouragement in making career choices, to the extent that they tended to struggle to complete courses in the absence of advice which middle-class parents were bestequipped to provide. This finding suggests that parent-child roles have not been reversed as a consequence of a child caring for one of their parents. The term 'role reversal' is inaccurate, off-putting, and potentially a cause of resource misdirection. It is also a major barrier to societal recognition that some young and young adult carers suffer from a intersectionality of disadvantage, between not knowing how to navigate the education system and being disadvantaged in this system on account of being a carer.

Social class is a family-of-origin characteristic. The sample of young and young adult carers was less diverse in terms of personal qualities and distance travelled. All were strikingly strong individuals, and most were aware of the abilities that enabled them to carry out their caring role. Even the respondent who himself had disabilities felt that he had discovered many 249

personal strengths through being a carer, qualities which he believed he would someday transfer to other roles. All but one of the young and young adult carers whom I interviewed were taking tangible steps, albeit often informal ones, towards transition to a career that, in the case of the socially disadvantaged, would bring them above the level of their parents in socioeconomic terms. The most recent research also suggests that young and young adult carers generally see themselves as strong individuals (see Chapter 3: Literature Review). Therefore, the personal strength found among this sample may correspond to that of the young and young adult carer population as a whole. However, the NEET data show how much the young and young adult carer population as a whole struggled, even in the preausterity era (Heyman & Heyman 2013). The sample may not have included enough of the most desperate strugglers.

It is entirely possible that less assertive, more compliant, young and young adult carers are underrepresented in the sample of this and similar studies. Advocates for young and young adult carers may be less willing to put them forward for fear of diluting the average strength of the collective voice, and they may be less willing to engage with researchers. To develop a fuller understanding of intersectionality in future research, it will be necessary to actively seek out former or present young and young adult carers who are furthest from organisation-based volunteering, education or employment of any kind. A good example of the privileging of assertive carer voices concerns the gender-blindness of young carers’ project work (see Chapter 6: Interviews with Young Carers’ workers). I met both men and women who had become young carers’ workers after having been young and/or young adult carers themselves in previous decades. However, they were unlikely to have felt the same as the young women I interviewed, who wanted to avoid a career that would take them too close to their childhood experiences. Two of the young women who participated in my research were well into their 20s, and therefore similar in ages to the young carers’ workers who had pioneered services in their areas. One reason that such a strong emphasis has been placed on 250

young and young adult carers developing resilience (Gray 2011) may be that so many writers, practitioners and campaigners have themselves been resilient former carers. Resilience and rebellion should be seen as dynamic variables that influence future life chances, both positively and negatively. They are not merely the outcome of a caring role intersecting with other background circumstances. Future researchers should consider deliberately seeking out rebellious and conformist carers who are otherwise comparable in terms of background characteristics.

8.3: Can rebellion be beneficial, or does it just reinforce the oppression of women and young people under neoliberalism? As detailed in the findings chapters, young and young adult carer participants in the present study demonstrated a capacity to rebel against their peer group, professional services, and, where applicable, oppressive parents. To some extent, the young carers’ worker respondents had encouraged them to do so, by prompting them to get organised around political and social goals. This raises the question of whether young carers’ services are inadvertently pushing young and young adult carers to feel they are obliged to become more resilient (Olsen and Clarke 2003); and, in the longer term, more isolated in their responsibility for holding their families together (Gray 2010).

However, my research findings support the promotion of activism by leaders of young carers’ projects. Despite feeling an obligation to find their own solutions to family problems, while getting involved in the problem-solving of organisations on behalf of supposedly more needy families, young and young adult carer respondents did not appear to be isolated from mainstream youth networks. Instead, they joined in, boys especially, with a wide range of work, education and leisure activities. They managed to combine such activities with caring for a family member by using their time in a more careful and structured way than other young people.

These findings stand in contrast to those of Becker and Becker (2008). They concluded that teenage young and young adult carers felt held back from the 251

stereotypical youth activities of frequent nights out, and preparing to leave home, as a result of strained relationships with the cared-for person. The young and young adult carers who participated in the present study mostly did not want to be like the typical hedonistic young people that they saw around them. Many had constructed rounded narratives about the perils of wasting one’s youth in a state of disconnection from the adult world, and failing to make purposeful preparation for an independent future. These narratives enabled them to construct normalising accounts of being different from the majority of their age-group. In the cases of Daniel, Gemma and Joanne, this attitude may have been strengthened by awareness that their mother’s condition was life-threatening, and that they would not be able to wait until their 30s to benefit from parental advice. The difference between my research findings and those of Becker and Becker may also be due in part to my adoption of a biographical approach. This approach may have attracted respondents who were particularly interested in thinking and talking about their futures (see respondent information sheet in Appendix 3). In consequence, the sample may have been biased, in comparison with that of Becker and Becker, towards young and young adult carers who particularly valued achieving relatively early maturity.

Where young and young adult carers did participate in youth activities, these were generally of a structured kind, and were undertaken with a clear purpose, such as relaxation, advancement of a political cause, or pursuing a career interest. They saw themselves as advantaged rather than disadvantaged when it came to being ready to leave home, particularly if they were girls. Two girls had achieved an unusual feat for their generation, namely leaving home at the age of 16 in a non-crisis situation. One lived across the road from her mother, and still cared for her. The other had moved away to live with her aunt. Nevertheless, they still cited these moves as acts of freedom and independence. It was the boys who occasionally expressed guilt at the thought of being away from parents who needed them, although perhaps not to the extent that they would have turned down a career opportunity that required them to move away.

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On the other hand, the findings do fit well with those of Becker and Becker (2008) on the issue of vulnerability to problems in relationships outside of the family. It may not be a coincidence that three out of five girls who participated in my study fell pregnant while still completing their education, and that two out of these three were no longer with the baby’s father. Both of these girls were from relatively well-off families, and were therefore going against the norm for people from such backgrounds, by having children so early in life. As with the respondents interviewed by Skeggs (1997), early motherhood potentially contributed to their being tied to a future in which they would have less options than the male young and young adult carers who participated in this study.

There was also evidence among research participants of strained personal relationships with peers. As with Becker and Becker’s research participants, they expressed a need for an understanding ear, and had difficulties maintaining relationships with friends and intimate partners who did not possess this apparently unusual attribute. Pete was the only person who had found a complete, durable group of friends who understood his situation, and even he stated how rare and surprising this was.

A final question that needs to be asked, with regards to the role of rebellion in shaping young and young adult carers lives, is whether the young and young adult carers would even be living in the family of origin, if they had not been rebels. I concluded Chapter 4: The Literature on Adult Carers by suggesting that a particularly relevant piece of literature concerned with adult carers was the Phillipson et al. (2001) study, which showed how personal financial circumstances alone can cause someone to return to living in the family of origin. Phillipson et al. found that it is at that point such people begin to gradually ‘drift’ into a caring role. This was not the trajectory followed by all of the participants in my study. Some had a caring role dating back to before they reached the age of 16. However, the two young men who had taken on a caring role at older ages, for a relative who had not previously required support in each case, had moved away from home, and then ‘drifted’ back after dropping out of university. They were not pulled back to a state of 253

dependence by their concern for a newly disabled family member. Instead, they were pushed away from a state of independence by a break-down in their lives outside of the family. Once fully engaged in a caring role, both were able to rebuild a degree of independence outside of that role. However, sustaining this independence depended on their ability to get their care tasks and responsibilities into some kind of manageable order. Their personal situations were not as extreme as those of the respondents who took part in the study undertaken by Phillipson et al., who took up a caring role after a major biographical disruption, but they were similar. In general, there may be a two-way causal relationship between lack of acceptable alternatives and becoming a young or young adult carer. I have also highlighted the relevance of Lewis and Meredith’s (1988) finding that some people have no concept of separating from their parents, and are prepared to stay on as carers until late middle age, at which point they can achieve independence through inheritance. However, many of the young and young adult carer participants in the present study had parents who were so poor that their children were unlikely to inherit much. Moreover, if there were non-carer siblings, then the latter would probably be given similar shares of any inheritance. Many of these respondents expected to do better than their parents, but only because those parents were living below what respondents considered to be the minimum necessary level for a decent life, managing on benefits, or on a typical single woman workers’ income. Some worried about ending up in the same circumstances as parents, who, in many cases had been made ill by undertaking too much work for too little money.

The young and young adult carer research participants were mostly training for relatively secure jobs that also met their need to be socially and/or politically useful, rather than for highly paid or conventionally high achieving jobs. They were aware that their career routes would take them above their parents in terms of education level and disposable income. However, they were nearly all materially dependent on their parents in the here-and-now. Most seemed to have settled indefinitely for partial independence, whereby they lived at, but had a career outside of, the parental home. They were 254

aware of the challenges that had had to overcome to achieve even this state of affairs. They felt undervalued by a society that would not recognise the dynamics of their circumstances. As much as they were proud of having built up resilience in the day-to-day interactions that helped them carry out the caring role, their rebellions did appear to be based on resentment that they had been placed in a position of needing to develop such personal strength.

8.4: Do mutual relationships correspond to equalised power? Gray (2010) has raised concerns about the least powerful and hardestworking members of society being trapped by societal demands that they become resilient. Similarly, Philip (2006, 2003) has argued that mutuality may become a trap through which individuals exploit youth. At worst, she found young people being put at risk, when they perceived themselves to have mutuality with ‘dodgy’ adults who were, supposedly, their mentors. At best, she found that natural community mentors in deprived communities were likely to confirm oppressive gender stereotypes. There is not enough information in my study to comment on whether respondents were being exploited by people outside of the family. However, young carers’ workers did suggest that exploitation and manipulation, most often involving cared-for parents, occurred inside families. It is possible that these types of family practices may be becoming less frequent, at the same time as intergenerational mutuality within families is increasing. The inclusion of mutuality in the caring relationship between a young or young adult carer and a cared-for relative offers a powerful means of normalising their situation. Comparison of the time of study (2008-2010) to that when the ‘young carer’ concept entered the national vocabulary (the early 1990s), shows that huge changes in the fundamental nature of how families operate have occurred. These changes involve both relationships between parents and each parent’s relationships to their children. The traditional gender roles that Aldridge and Becker (1994) described as impacting harmfully on disabled women and their children have been replaced by a loosening up of ideas about what constitutes a ‘normal’ family structure (see Chapter 2: Context). There has 255

also been a weakening of hierarchy within family household units, leading to more open communication between parents and children (Simon & Ward 2003). In consequence, many young and young adult carer respondents’ households had come to be dominated by powerful mother figures, including strong disabled women, whose perspectives on life young people greatly respected. Others had developed a fluid structure, in which no-one was in control, and family members were actively encouraged to follow their own inclinations as long as they were able to help other family members.

If there is any exploitation going on within households, it is likely to be far less visible than that found in the original Loughborough studies. This is because the ‘exploiter’ and ‘exploited’ would be sharing hobbies and family insights, like Gemma and her father; or planning a future in which the child can lead the parent towards major new shared interests, as when James got his mother involved with a new social enterprise. In this way, the historic changes in parenting documented by Simon and Ward (2003) have impacted greatly on the perception of mutuality between young or young adult carer and caredfor person. These changes have challenged gender norms in the way advocated by Philip (2003).

There is one aspect of mutuality present in the study, which is particularly likely to broaden young and young adult carers’ life choices, namely the ability to disassociate the caring relationship from the other relationships that make up family life. The overwhelming concern for families as a whole mentioned by respondents who participated in the study undertaken by Fox (1995) was notably absent in the accounts given by young and young adult carers who contributed to my study. Without exception, they identified major differences in the levels of closeness obtaining between different pairs of members within their household.

Young and young adult carer research participants had ambivalent attitudes towards their acquired coping skills, which they saw as the result of the unfair and unequal burden of understanding others better than others understood them. In contrast, they were thoroughly positive about any additional 256

closeness that they felt to the cared-for person in comparison to other siblings. Pete, Lauren and Daniel reported having always been closest to the cared-for person, despite other siblings having been, or having become, the main carer. Lauren had used this particular kind of caring experience to help her in her move towards advocacy as a career. Whereas the young carers discussed by Fox (1995) had reportedly been concerned for each and every member of their family, Lauren was proud to have stood up for her brother against other family members.

8.5: Should more care be provided by the state? The five young and young adult carers who had had some kind of caring role since early or middle childhood felt that they should have had more help in the past, to either reduce the demands of the caring role, or to support them in that role. However, some respondents said that they had made a choice to continue caring as a young adult. Three of the eight young and young adult carers who were new to their caring role stated clearly that the decision to take on that role had been a conscious one that they had made themselves, as an alternative to hiring paid help (see first section of Chapter 7: Findings from Interviews with Young and Young Adult Carers). It may be that, in the future, and with more distance from their caring role, they will come to feel that they ‘should’ have had more help from the state at the time. In the same way, the longer-term carers, looking back to their childhood from the present, stated that they should have had more help at that time.

The majority of the young and young adult carers who participated in my study did not see themselves as victims. They were confident in their own decision-making with regard to their caring roles, and other aspects of their lives. They also supported the choices made by a cared-for relative that had led to them becoming carers, for example when the main carer, most often the mother, had decided to allocate care tasks to the children so that she could go back to work. In defence of their parents’ choices, both the young men and the young women who participated in my study expressed the idea that being used to housework would help them with independent living. In 257

Aldridge and Becker’s (1994) follow-up study of cared-for parents, it was the parents, not the girls themselves, who associated their daughters’ caring abilities with being well-brought up girls. Moreover, there was a clear implication from parents that well-brought up girls care for others, such as future spouses, children and other relatives who might require care in the future. In contrast, all but one of the female young and young adult carer participants in my study had been brought up to enter careers. In Lauren’s and Gemma’s cases, these were to be secure, relatively well-paying careers with a pension, rather than ones that would leave the young woman in lifelong dependence on a higher earning husband or partner (Skeggs 1997). None of these respondents suggested that domestic skills could be used to care for future spouses and children when they were asked about what they had learned from caring. The two young women who had children of their own, and a third, who was pregnant, did not relate their mothering to their caring role in any way.

It is, therefore, hard to see how young and young adult carers might be persuaded on the basis of their own needs to hand more of the caring role to professionals than the families are already trying to organise. It may be that they are more likely to be persuaded on the basis of disability rights, rather than the rights of young people or women, to try a range of assistance arrangements, as Lauren had been. An optimum strategy in contemporary circumstances for professionals might be to start with disability rights, and use the disability rights movement’s concept of self-determination to introduce the rights of women and young people.

8.6: Do young and young adult carers need specialist projects? Olsen and Clarke (2003) suggested that the families of young carers need services, including housing and accessible family facilities, to take away the need for a young family member to adopt a caring role. Olsen and Clarke further argued that young carers’ projects are, therefore, both a waste of precious resources, and a possible means of unintentionally setting the children of disabled parents apart from other children. The present research 258

supports the idea that the failures of disability services are a more serious problem for young and young adult carers than any direct impact of their own role. However, they mostly believed that young carers’ project support was helpful for younger children who were carers.

The present research also shows, to the best of my knowledge for the first time, that there are a small minority of young and young adult carers, particularly those caring for someone with an acute condition, who do not regard their families as being in need of any services, and who show no sign of failing to cope with any aspect of their role. What does concern them is the risk of their family deteriorating, losing their carefully constructed life balance, and becoming more and more isolated. There is a need for young carers’ projects to sensitive their users to be ready to seek support, or opportunities, if and when there are future deteriorations, or improvements, in their family situation.

8.7: Methodological debate: Depth of biographical detail versus comparability Qualitative research is not primarily concerned with generalising about categories in order to compare them. However, qualitative researchers do compare and contrast subgroups within their sample, in order to uncover structural or deep-seated personal reasons for the differences between people. A classic example is Willis’ (1977) comparison of rebels’ and conformists’ attitudes towards education and society. The question for a realist qualitative researcher is not whether comparisons and contrasts should be made, but whether they should be pre-planned, and perhaps written into the sample design, or allowed to emerge from the data. I tried to do both by taking a grounded approach to sampling, and to some aspects of the question schedule design (see Chapter 5: Methodology). I will now discuss the effectiveness of my approach to identifying who and what to compare, in relation to previous research on young and young adult carers.

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I have tried to avoid the problem of underreporting less confident respondents by using negative case analysis. Strong, rebellious characters, like Pete, Lucy and Gemma, were frequently contrasted with quieter, more deferential people, like John and Tom, who were grateful for any support they could get from family or services. The latter may be less interested than the former in mutual, as opposed to reciprocal, relationships with people from older generations. However, quieter people may be less likely to put themselves forward as research participants. In consequence, the sample was probably biased towards more confident and critical respondents. The approach to sampling (see Chapter 5: Methodology) of accessing potential respondents through a variety of sources may have mitigated this bias to some extent. Nevertheless, it has to be taken into consideration, although qualitative research is not particularly concerned with generalisation, but rather with what exists. Even among the professional respondents, the most confident and critical voices may have predominated. In compensation, the research has generated detailed biographical narratives from young and young adult carers, complemented by the perspectives of young carers’ workers, which can be drawn upon in future research.

8.8: Is there a problem in being a female interviewer predominantly interviewing young men? Gender has emerged as a major contextual factor influencing young and young adult carers' biographical trajectories. This section will discuss how I dealt with being a female researcher who was aiming to counteract the bias in the literature towards females and femininity. Other aspects of reflectivity are discussed in Chapter 5: Methodology. This discussion concerned the day-today reality of doing research with people living surprisingly varied lives in highly challenging conditions. My only final reflection on the points raised in the methodology chapter is that they caused the data analysis and write-up to take longer, as I struggled with wave after wave of my own anger at society's failure to recognise talent among the disadvantaged.

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The sample was biased towards young men, particularly young men who were building unusual and potentially lucrative careers (see Chapter 7: Findings from Interviews with Young and Young Adult Carers). This was an unexpected result of the many informal methods of sampling that I used, which allowed unconventionally thinking workers to opt in and become gatekeepers. I was unprepared, as I had expected women to be overrepresented in the sample. Also, much of my professional experience had been in female- dominated settings such as Sure Start. Moreover, I was unable to find much current literature to draw on in order to assess how typical the male respondents were of male young and young adult carers in the population, even in terms of basic biographical characteristics such as housing and relationship status. It is, therefore, not possible to assess the extent to which these young men represent the ultimate disproof of the ‘Cinderella syndrome’ notion, or were unusual among young male carers in the population. The men generally felt themselves to have either chosen their caring roles, or to have drifted into them due to closeness to the cared-for person, and/or lack of alternatives for themselves. However, the broader picture may be that that many male young and young adult carers are indeed trapped into a role which they would prefer to escape from.

8.9: The value and limitations of retrospective accounts Perhaps the most important issue affecting the validity of the study is that stories were being retold that had almost certainly been narrated before. These stories may, therefore, have become uncoupled from the events they referred to. This risk was mitigated to some extent by repeatedly asking respondents to recall the conversations that they had about events, alongside the events themselves, so that I could see the history of the narrative, as well as the 'facts' about the respondent's history that were supposedly being revealed. However, the issue remains of how far it is valid to rely on retrospective accounts, particularly when young adults are recalling the emotions of mid-childhood, over half their life-time away.

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In Chapter 3: Literature Review, I suggested that Frank et al.’s (1999) retrospective accounts showed methodological strength, in that respondents appeared to be being honest about long dead relatives in a way that they might not have been when they were alive. The only case of a bereaved young adult carer in the present study supports this impression. Ryan was able to talk jokingly with me about his now dead grandmother’s most challenging eccentricities, in a way that he said he had formerly only been able to do with his closest friends. No other respondent talked about the cared-for person in that way. For example, Lauren only discussed her disabled brother’s faults in the context of conveying that she considered herself to be relatively good at talking openly with him about his behaviour. Other carers discussed their strategies for dealing with their cared-for person’s faults, but always in a matter-of-fact manner, or as a way of demonstrating their coping ability.

A useful question sequence that I might have used to obtain information about perceived problems with the cared-for person would have been, ‘What is your [disabled relative] like? How would you find them to care for if you didn’t know them?’ However, some respondents might have been uncomfortable with this line of questioning. Since there are likely to be many young people caring for people with late-onset acute or terminal conditions, this would be an ideal age group with whom to carry out retrospective interviews immediately following the end of the caring role. If I had waited a month, I could have interviewed James after the ‘official’ end of his caring role, following his mother’s recovery. Similarly, I might have spoken to Joanne after her mother had got over an illness which she was expected to recover from. However, the advantage of present accounts is that they provide a here-and-now perspective on how the person feels. Examples include Daniel’s fear of his mother dying while he was away at university, and Joanne’s feeling of confidence that her situation would improve in the near future.

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8.10: Sensitisation One criticism that I made of Frank et al.’s (1999) methodology was to question their assumption that interviewing current young and young adult carers would automatically sensitise them to the accounts of those who were no longer in this role. As a researcher, I came in to this project having interviewed a large number of people from various disabled service-user groups, and also their carers. This experience did help me remain sensitive to issues of terminology. However, my main sensitisation came from having been a professional researcher and evaluator looking at programmes and policies in Sure Start, schools and family-friendly workplaces. For the most part, this combination served me well in terms of understanding the carers’ views of both their disabled family members, and their own transitions to adulthood.

However, my relative lack of experience with carers did occasionally cause me not to prompt when young and young adult carers talked about how they came to be carrying out certain care tasks. For example, when Ryan said that you either have to accept your disabled family member as they are or walk away, I did not ask him how possible it would have been for him to do the latter. This would have been a revealing question to ask someone whose grandmother had received no professional assistance whatsoever with her social care arrangements, and also had few other family members to assist with her care.

8.11: To what extent should biographical researchers try to predict the future on the basis of respondents’ expressed attitudes? My research has documented ongoing culturally-derived assumptions about gender differences between male and female family members that go beyond the surface characteristics of immediate caring roles. Girls and women are generally assumed to be ‘naturally’ capable of taking on caring roles, both at home and in the caring professions, while men and boys are often deemed to be ‘natural’ choosers and actors. Hence, men are quite likely to link their career choices to their history of caring, so that they get the advantages of

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being informed and driven to bring about change, without the material disadvantage of entering the often poorly paid, insecure caring professions (Skeggs 1997). In contrast, women are likely to talk about distancing themselves from jobs which are too similar to their family roles, even though they are nevertheless entering some kind of caring profession.

For young and young adult carers like those who participated in the present study, any impact of this difference is likely to be felt in the future. At the time of the study, respondents were either studying, in training, beginning to build a business, or seeking career change. Thus, none of the young and young adult carers felt that they had already arrived at the place where they wanted to be indefinitely. Research into the lives of young and young adult carers tends focus on what is already happening, or has already happened. In addition, it is often predicated on assumptions about ‘normal’ life courses, for example that a smooth ride through education without any twists, turns and distractions is inherently beneficial. Detailed comparisons of the specific viability of individual young people’s career plans can help researchers to avoid the assumption that current educational success predicts future career achievement. However, quantitative research is needed to actually predict future success, whereas qualitative research can only raise questions about existing assumptions.

8.12: Does the study of young and young adult carers require a grounded approach? My methodological benchmark for carrying out this study was Ungerson’s (1986) work, which was based on a grounded approach (Bertaux 1981). This approach was combined with a grounded theory methodology (Corbin & Strauss 2014; Strauss & Corbin 1990). As I did, Ungerson used a flexible, flowing, semi-structured interview method. Her analysis also flowed in a way that avoided artificial separation of respondents by age or gender category. Instead, she allowed any such relevant distinctions to emerge from the data. My analysis was not quite so seamless. For example, the distinction I drew between middle and working-class families of origin was somewhat artificial in 264

terms of where to draw the line. Nevertheless, I have at least gathered seamless biographies. For all respondents, I obtained information about what happened before, during and after their most intense period of caring. Furthermore, each step towards independence was placed in the context of the preceding period of dependence. In contrast, most other critical studies (Smyth et al. 2011; O’Dell et al. 2010; Olsen & Clarke 2003) have provided mainly a snapshot of young and young adult carers' feelings about their lives, leading to a critique of how this category is constructed. Such snapshots are only of limited usefulness even in terms of critiquing the category. When asked about terminology in the context of other life events, young and young adult carers and practitioners will often give a critique of the category that is far more insightful, albeit less straightforwardly dismissive. Snapshot critiques may be better in terms of broad applicability, but only a grounded, biographical approach can yield examples of inappropriate categorisation of people as young or young adult carers having a direct effect in real cases.

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Chapter 9: Conclusions My conclusions largely mirror those of Skeggs (1997) with respect to the relative powerlessness of young and young adult carers, particularly those who are working-class and female. Like Skeggs, I identified their limited use of agency. This use was largely confined to bringing themselves up to minimal standards in relation to current expectations, with respect to needs such as material resources and the avoidance of social isolation. Their powerlessness was related to the core analytical category of young and young adult carer normalisation of their role and family circumstances versus its conditional and absolute pathologisation by young carers’ workers and non-specialist professionals, respectively.

Young and young adult carers mostly wanted support services, peers and family members to take their caring role as a given, and to offer better support. Young carers’ workers also started from this position, but emphasised the vulnerability, as they saw it, of young and young adult carers to abuse, exploitation and developmental disruption. Without exception, young and young adult carer respondents did not want young carers’ workers to scrutinise them and their families in this way. Respondents from both of these groups related many stories about teachers, social workers, peers and family members who had made life difficult for young and young adult carers by not taking into account their untypical circumstances and roles.

The pursuit of relatively close relationships with authoritative adults was one of most important ways in which young and young adult carers attempted to exercise agency in order to merely survive at a minimal level relative to contemporary standards. However, in acquiring the ability to deal closely with adults, they also found the means to develop self-efficacy beyond this level. The young men who participated in the present study often used such relationships to pursue various routes into social entrepreneurship and intrapreneurship. The young women tended to use the same sorts of relationships in a much less personally ambitious way to try to right perceived 266

wrongs in their immediate world. At moments of heated discussions with authoritative adults, young female working-class carers would not only assert the rights of their community of interest, namely disabled people and their families. They would also challenge societal conceptions of themselves as the mere 'foot soldiers' of caring (Lynch 2009).

Young and young adult carers routinely and frequently step into the fully adult world for reasons that go beyond immediate practical necessity. They want, and need, to attain different types of relationships with adults, as compared to those enjoyed by other young people. They do so in order to conform to the roles and identities that have already chosen in response to their family’s situation. They mostly seek mutuality with older adults, including the cared-for person. This overall orientation can be combined with a flexible approach, in which they become a leader for some activities, and a dutiful follower of the nominal authority figure, for example a cared-for parent, for others. The latter is not usually experienced as reciprocation for the care that the young person is providing. The only possible element of reciprocation is across time, as adult offspring pay back the care, consideration and guidance that older family members gave them earlier in life.

Much of this thesis has been an attempt to reframe research conclusions about the lives and aspirations of young and young adult carers, so that it becomes more grounded. This approach makes it possible to move beyond descriptions of current feelings and social constructions. For example, those who are, or are soon to become, parents seem least likely to use the term ‘like a parent’. Perceiving non-resident family as useless may be due a more general clash of worldviews. Instead of merely reproducing carers’ expressions of their emotions, or analysing how these expressions may be socially constructed, a wider analysis can contribute to a sociology of how these emotions may differ from those of people who are not carers. Walkerdine’s (2010, 2007) sociological studies of class and emotions are based on similar principles.

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9.1: Implications for youth studies and gender theory The evidence contained in this thesis suggests that youth studies researchers such as Campbell et al. (2005) are right to argue that the older generation in general often oppress youth in general, especially in the personal arena. Interviewing adult women and men about their girlhoods and boyhoods is a bad way to find out about the oppression of individual girls and boys. Only young people themselves know what it is like to be a young person, particularly in terms of lived experiences of exercising agency.

However, carers and former carers of all ages are likely to have an insight into youth dependency because they have experienced the contempt with which powerful forces hold care work and those who depend on it. In this sense, both carer and cared-for person are trapped (Morris 1996). Even carers and disabled people who do not feel constrained by their day-to-day situation are nevertheless facing a trap, due to the inability of society to fully acknowledge their needs and attributes. Similarly, young women workers are still being widely discriminated against merely because of the possibility that they might bear children in the future, an attitude which has required legal challenge through sex discrimination legislation in the UK and elsewhere. One can be deemed ‘risky’ through abstract association with care work or vulnerability, even if one is not actually caring or vulnerable. If young and young adult carers can be helped in their quest to prove that care work skills have value in other contexts, then the ‘risky’ label might be removed from a whole host of groups who are currently being given second class status on account of that label.

Women and girl carers are, in addition, likely to have their informal caring role dismissed as ‘natural’, and unrelated to any ‘drift’ into the caring professions influenced by their life circumstances. They are likely to remain financially dependent on either male relative or male partners, instead of being able to use their life experiences to access higher status and better-paid, more reliable jobs. In contrast, young men are more likely to be able to pick and 268

choose which parts of the informal caring experience to capitalise on in their careers, and can make alternative uses of their formal care work experiences. The dependency of adult woman who were formerly carers tends to persist, regardless of high motivation and ability levels, strong political literacy, high motivation and long-running contributions to society. Young female carers are, therefore, a group worth following into the future, both as a barometer of how our society marginalises competent voices, and as a source of knowledge about the underlying reasons for social policy failures. Gender comparisons of the same people across several stages of the life cycle may reveal trends which snapshots cannot.

However, even longitudinal research has a flaw, in that the researcher is forced to reread data that they gathered years before, and reinterpret it in the light of the follow-up research. This may inadvertently privilege the newer data from the now older respondents, and devalue the older data that those same respondents produced when they were young, particularly given that policy contexts will have changed. There is a need to somehow bring together research on current young people’s lived experiences and knowledge with research that documents the journeys already taken by people formerly in those types of situations. It is necessary to ask not only whether young people are acquiring knowledge and exercising agency, but whether these acquisitions will enable them to overcome the societal restraints that they are likely to face in the future. Better understanding is needed of informal harm mitigation strategies, such as preparing children to take over the house if some hypothetical need arises in the future. Such strategies may appear to be associated with oppression and poor outcomes, but may prevent even worse ones.

Neoliberals tend to think about social mobility in terms of enabling the most able individuals to move up the social class hierarchy. They assume that such people need only aim harder or faster for the same goals that middle-class youth can reach in easy steps. In order to develop a more successful society, people of all social classes need to be enabled to make ground-breaking 269

achievements that create new spaces, rather than merely having the most successful working-class youth swapping with the least successful middleclass ones (Henderson et al. 2007; Hooks 1984). The challenge for social democrats is to provide spaces for such people, for example James and Ryan, discussed in Chapter 7: Findings from Interviews with Young and Young Adult Carers, to succeed away from the mainstream. It is also necessary to create services with the resources and confidence to help those significantly disadvantaged youth who do want to be part of the mainstream.

Even within mainstream employment, young people whose outlooks have been affected by their experiences of caring responsibilities are likely to want to operate in a somewhat different way to those who have not. There are similarities to what, in the business world, are called ‘intrapreneurs’. Intrapreneurs work within conventional organisations, but take hands-on responsibility for making sure that innovation happens. They persist with their goals, and, in doing so, challenge established boundaries between departments, disciplines and organisational functions. They are disinterested in conventional rewards, and are more likely to be motivated by the promise of generating more resources to achieve collective goals (Pinchot 1985: p1). In relation to the present study, intrapreneurship was displayed even by Lucy, a consumerist. She led one of her young carers’ project’s fundraising efforts because she wanted the project to have high quality furnishings.

9.2: Implications for studies of carers: Dependency structures impacting on young and young adult carers Despite relatively high levels of organisational skill and practical ability, young and young adult carers are disadvantaged in other ways relative to their peers. Many are materially under-resourced in comparison to most of their peers in education. Some seek to take on employment on top of their caring duties, in part to keep up with the consumer standards of their friends. Such jobs may be experienced as a respite from caring, and as an impetus to share the domestic workload with others. For example, Pete and Lucy both made arrangements for someone to cover their caring responsibilities solely when 270

they were at work. However, employment may also add to the long-term problems of a group of people for whom time-poverty and stress are common experiences. Given that three-percent or more of their age group (Carers Trust 2013) are young or young adult carers, and are more likely to be found among the lowest socio-economic groups, the difficulties which they have in participating in the labour market may impact on overall social mobility at the national level. As the evidence presented in the preceding chapters suggests, there is not necessarily a link between exercising agency in day-to-day interactions and overcoming structural constraints to self-efficacy with respect to developmental transitions. This is primarily because agency is so often exercised by carers on behalf of the cared-for person, or other needy associates, rather than for themselves. Some young and young adult carers, like Gemma, may be willing and able to put themselves first in the longer term. However much they help out while living at home, they do not plan to stay there forever, or to follow the type of path that is ‘normal’ for their family, and do not primarily identify as ‘carers’. In contrast, for those whose role in helping their disabled family member is part of their primary identity, even for a short space of time, the transition to adulthood may be easier if there is a sense that carers and cared-for people are changing together.

Such a dynamic seems to demand that they share a common journey through the cared-for person’s life changes, and agree about what needs to happen to improve both of their lives in the future. This was the case for Lauren and her brother Peter. According to her narrative, they shared the aim of making him more independent, while she also needed to establish an independent home with her new partner and daughters. Similarly, James and his mother both wanted to get involved with the same worthwhile but unconventional work project during her period of recovery.

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However, the other young and young adult carer research participants did not appear to have either Gemma’s independent mind-set or the mutual relationships with the cared-for person achieved by Lauren and James. Many, like Daniel and John, were motivated primarily by loyalty and admiration towards the cared-for person, whose decline they might well find harder and harder to cope with as time goes on. Others, like Lucy and Pauline, looked back with regret to a time when another, now absent, person used to be the main carer. They had antagonistic attitudes towards state services, relationships with which might deteriorate as the cared-for person’s needs become greater, and their families become more dependent on those services. Both antagonistic service use, and loyalty to the wishes of the caredfor person, constitute forms of emotional dependency which exist over and above the material dependency that has been created through intergenerational inequality.

On a larger scale, both carers and cared-for people fall under similar intersectionalities of disadvantage. Most are victims of a combination of disablism, sexism and working-class dependency on the state for housing. This combination can impact badly on disadvantaged families. Particular issues arise in traditional gender-segregated families when the mother or grandmother is disabled, and in families in which one person is both disabled and providing care. From a disability movement standpoint, Keith and Morris (1996) argued that society’s treatment of disabled, working-class mothers from childhood onwards prevents them giving their children a ‘normal’ childhood, or, by implication, young adulthood, if they stay at home.

However, Keith and Morris were discussing a time when being dependent on state services was less stigmatised within working-class culture (Skeggs 2005). Moreover, this was a period when the availability of housing to young adult carers who did choose to leave home was much greater than it is today. Nowadays, it is the fate of a whole generation of young people not to be able to afford to leave home for the foreseeable future, regardless of their own or their family’s employment status (see Chapter 2: Context). The choice for 272

young and young adult carers between being ‘trapped’ caring for a disabled person and being ‘free’ to start an independent life does not hinge only on appropriate services being available to support the disabled person. There is also a need for emotional and practical support to help young people to cope in the wider world. In this world, they may experience a clash between the skills and knowledge they have acquired from caring and society’s current template of youth. This template renders youth as a state of inexperience, hedonism and powerlessness, and is one that young people may buy into to some extent.

The disability movement relies on the assumption that both the cared-for person and the carer regard their situation as oppressive, and would prefer assistance from the state (Morris 2006; Olsen & Clarke 2003). This argument may be convincing in the case of young carers aged under 16, whose parents have been consistently shown to feel that their children are being cheated by society at large in order to save the state money (Olsen & Clarke 2003; Aldridge & Becker 1994).

However, the analysis offered by the disability movement is not always so convincing in the case of young adults. For example, Ryan and James clearly chose to take on their caring roles for a limited amount of time as a form of occupation. Ryan did so because he had already had professional experience of supporting disabled people. James made this choice because he had returned from university, and was available to take over a paid role that his mother had had a neighbour doing. These two cases illustrate the importance of looking at young people’s narratives in terms of the tangible and critical details of their own lives, rather than projecting an analysis of the cared-for person’s position in society to explain the young person’s behaviour. In the case of sibling carers, the caring role might change as both the carer and cared-for person grow up, and both become more independent, as with Lauren whose disabled brother had left home, but still needed her to attend his care planning meetings as advocate. 273

This thesis has presented evidence that young and young adult carers want and need closer mutuality with the older generation than they currently achieve. It represents the opposite of the pathologisation of relations between young and young adult carers and cared-for persons. Such mutuality helps them to obtain appropriate recognition at college and work for their caring roles. It also makes it easier for them to carry out informal, non-stigmatising negotiations in order to obtain practical help with meeting the challenges that they and their families face. However, mutuality is not about young people claiming special favours from the older generation on the grounds that they are carers. They want all members of both generations to come closer together, and recognise a reality in which day-to-day tasks need to get done. Some are conformists, some instrumentalists, and some rebels in their views of how society should support people with disabilities and how professionals should conduct themselves. Nevertheless, they identify a challenge which is broader than that of on-the-ground service provision for people with disabilities. Instead, it concerns entire societies needing to be able to recognise and appreciate the potential for mutuality between different agegroups.

Most young and young adult carers need to be around other young people, and wish to experience similar leisure activities and socialisation, even if, ironically, this brings them into conflict with adults. This need does not arise from a universal of human development associated with youth, but from the specific circumstances of young and young adult carers in contemporary society. Taking time out to relax by doing something that is as different as possible provides a break from the responsible part of their lives that is characterised by necessity. The youth leisure scene offers a refreshing contrast with the world of caring because it is fast-paced, informally structured and egocentric. It is the polar opposite of spending ones’ days in a series of often futile social services meetings and doctors’ appointments on behalf of someone else (Lynch et al. 2009). The latter is characterised by a state of constantly acting decisively in a state of uncertainty, whereas the former is characterised by a state of freedom from the need to act or decide other than in the immediate present. 274

This thesis has highlighted the depth of prejudice within society against intergenerational mutuality. The reproduction of family and community are assumed by policy-makers to be the appropriate work of adult able-bodied, middle-aged women (Lynch 2009). Too often, such women are expected to carry on without acknowledgement or thanks. If anybody else takes on the work, such as young people, or people who are themselves disabled, they are either cast as victims, or forced to remain invisible. In the final analysis, sexism and disability discrimination are the societal forces which create challenges for young and young adult carers. However, at the time of the experience, young and young adult carers of either gender may not feel themselves to be victims of sexism. Even girls who believe they are in their caring role because of their gender will say that they are ‘happy as they are’ , and proud to be from the ‘nicer’ sex. It is later in life, when they become more and more dependent on the men that they marry or partner, and find themselves carrying out ‘women’s work’ that is not even appreciated by the family beneficiaries of the work (Skeggs 1997), that women may come to feel how negatively our society views caring roles.

9.3: Long term impact of the caring role Considering young and young adult carers in terms of their immediate situation, boys would appear more likely to be NEET (Not in Education, Employment or Training), and more tenuous in their steps towards independent adulthood, than girls. However, there may be a greater long-term risk of young women carers ending up as ‘hidden’ unemployed despite their apparently high ability to cope and move towards independence. Staying on at school after 16 is the norm in the North-East region and elsewhere in developed countries. Despite being a necessity for almost any career, it is rarely enough on its own to ensure career success. Girls often move towards the types of care work careers that will lead them to be a reserve labour force, looking after their families, and financially dependent in times of low labour market demand. This analysis suggests a 275

cutting of ambition at the point at which teenagers first start to seriously consider their career decisions. However, perhaps even more importantly, the most talented girls are not following the types of routes that would allow them to realise their collective ambitions for disabled people and carers more generally. These ambitions may be well-developed in young women’s minds, but be unconnected to their career choices, even in the sense of using a conventional career to pursue alternative goals. The young women whom I interviewed displayed agency in response to their situations, and were thereby opening up new possibilities, as Giddens (1984) would have predicted. However, they were not breaking through the gendered labour market because they perceived gender hierarchies as a 'natural' given. In contrast, for example, they constantly challenged hierarchy between professional and non-professional knowledge.

There has been long term failure of ‘left-wing’ power structures to attract to the top those who have the greatest personal interest in collectivism and equality of opportunity, namely working-class women with significant family commitments (Skeggs 1997). It may not be a coincidence, related to small sample size, that young male and young female carers who participated in this study tended to pursue different career aspirations. Many of the former aspired to careers in which they could contribute to changing social provision in favour of their collective goals. In contrast, young women carers frequently viewed their choices of care-work careers in terms of opting for what was achievable. They pursued collective goals, if at all, through their unpaid, dayto-day practices. They thereby inadvertently reinforced the idea that their political activism, like their informal caring, was ‘women’s work’, to be devalued and marginalised.

9.4: Young people, carer roles, and dependency dynamics There were essentially three factors behind carers’ dependency on their families and state services. The first, economic marginalisation, is not unique to carers. However, it may be exacerbated by having caring roles. This is 276

because the extended stays in the family of origin that many young adults are now experiencing may come to be lengthened further because of difficulties such as having less opportunity to meet life-partners (Phillipson et al. 2001). As compared to previous generations, today's young adults find it far harder to obtain their own place to live, and to secure a long-term job. However, employment is still considered essential, in line with the demands of the Protestant work ethic, which still defines the routes to respect that are available in poorer UK communities (Macdonald & Marsh 2004). This makes it near inevitable that young people will stay longer in their family unit of origin, or the homes of other relations such as grandparents, and either be pushed or pulled into caring if one of these relations comes to be in need of care.

Young women have the option of leaving with a man, often older than themselves, who has obtained the necessary level of income and housing, and can then start up their own family household unit (Skeggs 1997). However, they often find themselves either caring for another sick or disabled person at a younger than usual age, or struggling with the additional disadvantages of being a young mother. This trend can be attributed to some extent to young women having to enter a new structure of dependency when they rely solely on a sexual partnership to obtain a home away from their family of origin.

A second factor behind carers’ dependency on their families and state services is psychological, but the cause of its high level in carers can be understood in Foucauldian terms. This is the tendency identified by Gray (2011) for carers, and female carers in particular, to take pride in adapting to conditions of oppression to the point that their self-imposed need to make themselves resilient and develop coping strategies becomes part of the oppression. A good example is the self-described 'cheekiness' that Lucy had gradually developed to cope with the rudeness and material unhelpfulness of the people whom she dealt with while going about day-to-day business with her mother and sister in wheelchairs. It might have helped her psychologically, 277

and made it more likely that requirements such as supermarkets opening their disabled checkouts would be met. On the other hand, it also made it harder for her to accept outside help, or admit to helplessness. The conditions which cause carers to self-regulate in this way do not arise solely from individual people behaving insensitively and unhelpfully. They derive from the state via structural inequalities which professional practices which disempower both the disabled person and their carers, and from legal definitions that mark young and young adult carers as 'other' (Banks et al. 2001).

The third factor is a product of culturally sanctioned power. In contemporary Western culture, young people are not considered fully adult until they have a home or a family of their own (Pilcher 1995). In the case of the young and young adult carers who participated in my study, their being considered ‘nonadult’ meant that all parties accepted the legitimacy of more powerful ‘adults’ labelling, and attempting to control, their actions within the home. Family need to be re-conceptualised, so that young people can be viewed as having a proper place among their relatives by right. This will require working positively with family units that have been brought closer through the young person being a carer. Such work must be balanced by efforts to encourage young and young adult carers to strive for more self-efficacy in the transition to adulthood.

9.5: Recommendations for practice: What can be done to improve support for young and young adult carers? One of the drawbacks of biographical research is that it often leaves the researcher struggling to make concrete practice recommendations. The researcher is left offering general advice about the need for greater sensitivity to service-users’ biographies and narratives. However, the research findings can be used to suggest some specific points at which a more sensitive approach can be applied, by social workers, young carers’ workers and link workers. Some tentative proposals are outlined below.

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In practise, young and young adult carers are already being allowed to connect their identities with those of the services that help them. This is being done through them being encouraged to get involved in policy campaigning, direct volunteering and fund raising. However, the sense of professionals and carers being part of the same community needs to be acknowledged more in documentation and terminology.



In assessments, young and young adult carers should be treated as people who have been affected by their family’s different situation, rather than as being different in themselves. They should be classified according to how their situation affects them, for example, missing college or other specific activities in order to care, or facing a limited choice of people to form relationships with. Circumstances should be considered rather than behaviour, for instance the numbers of hours a week spent caring, or the tendency to form relationships with boyfriends who also require care. It should not be assumed that, because the family appear to have positive attitudes to education, they therefore know how to navigate around further and higher education. Traditional working-class families are nearly always disadvantaged when it comes to such navigation, and the families of young and young adult carers have additional difficulties in finding the time to learn about these unfamiliar environments. Even the most resilient and entrepreneurial young or young adult carer can be disadvantaged through trying to make decisions on the basis of insufficient information.



In specialist youth work provision, greater focus should be placed on providing the types of leisure activities that will best help young and young adult carers to relax and destress. Less effort should be put into trying to ‘normalise’ young and young adult carers’ lives and leisure activities. For some, this will rule out any type of carers’ group activity.

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When young women carers, in particular, talk about their education and career needs, and their aspirations seem unnecessarily low, feminist consciousness-raising techniques can be used to try to help them to find options that may make them happier, more motivated and more stable financially. The assumption that gender is irrelevant because boys also have caring roles, should be challenged. Even where the immediate impacts seem to be being felt more by young women, and young women seem to be accessing more career opportunities than their male counterparts, it should not be assumed that this pattern will continue in the longer-term. An intersectionality of disadvantage between being a carer and being female should be recognised.



When young and young adult carers express a desire to become involved in political activities that can change the future for younger carers, they can be encouraged to think of themselves as part of a broader movement which is using the voluntary sector to challenge mainstream institutions. Other historic examples include tenants associations working both for and against the Labour Government’s community renewal policies (Alcock & Scott 2002), and the women’s movement working both within and against the trade union movement after the Second World War.



Differences between older disabled siblings, who can also be givers of care, and younger disabled siblings, who may need to mostly receive one-directional caring, should be recognised. Such differences can be blurred by the blanket label ‘disabled’.



Similarly, it should be recognised that the term ‘family’ can undermine important distinctions that young people make between different family members with whom they have different types of relationships. Steps that some recently disabled parents may have made prior to becoming disabled to prepare their children for an uncertain future should be recognised and supported as appropriate.

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9.6: Coda: Policy-making is personal Think how preposterous [the co-dependency concept] would seem not only to a man whose daughters had just been killed by a terrorist bomb, or someone who was hungry, but to someone, anyone, in Croatia, the Soviet Union or South Africa … more worried about what will befall their real children than what has befallen their inner child. (Rieff 1991, cited by Anderson 1994: p678)

Since the financial crash of 2008, our society has gradually been moving away from the affluent, navel-gazing one referred to in the first line of the above quotation. We have instead, in many parts of our country, moved closer to the desperate wider world that is being depicted in the rest of the quotation. When I started this thesis, colleagues and I could worry about the long-term psychological well-being of young and young adult carers who were temporarily foregoing a ‘normal’ youth, in order to carry out their caring role, as if this were one the worst fates that could befall a young person. As of 2015, disabled people and their families are being left to depend on foodbanks, and are increasingly the victims of government propaganda-fuelled hate crime (PSE 2014).

In February 2014, a mentally ill man starved to death following benefit sanctions, despite a letter from his doctor begging the assessors to accept that the patient was unfit for work. His family could do little more than ask that the families of mentally ill people who have been sanctioned be informed in future, so that they might step in to feed the person (Gentleman 2014). The family probably felt that there was no longer any point arguing that relatives should not have to step in and feed sick or disabled adults, in order to keep them alive. The concepts of social insurance and entitlement are being eroded, even though workers still pay the contributions which were supposed to protect people in the event of incapacitation or unemployment.

One day, the UK might try to rebuild the welfare state, and it is worth asking where both the original policy architects who formulated this state after the 281

Second World War, and the social scientists behind them, may have gone wrong. It has often been argued, rightly, that their greatest mistake was to ignore the needs of women (Bochel 2002). However, social scientists have tended to assume that the consequences of ignoring women's needs are going to play out in their narratives. In particular, Morris (1996) highlighted that a majority of disabled people are female, as are most long-term family carers. However, it is often the grandsons, sons and brothers of disabled women, frequently working alongside a full time long-term female carer, who will have travelled the furthest in trying to right perceived wrongs. A classic example is that of former prime minister Tony Blair, who invited a group of carers to Downing Street before any other group of people, after having grown up watching his mother rehabilitate his father following a stroke (Blair 1999). Former male carer perspectives may be more retrospective than those of women who have spent a life time on the margins, but they are nevertheless worth hearing.

There has never been a more important time for feminists to look at the issue of care work in a way that is neither excluding of male carers, nor genderblind. Young women carers and working-class male carers alike suffer from an intersectionality of disadvantage. However, the evidence suggests that young middle-class male carers would be happy to work towards remedying these inequities on behalf of their whole community of interest. After all, intersectionality is a matter of technical detail, and, as Aldridge (2014) pointed out, young and young adult carers thrive on technical detail.

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Appendix 1: Abstracts from published outputs of this project Heyman, A (2013) Partnership Working between Young carers’ project and Social Services: The Need for Young Carers Work to Establish itself as a Profession, Social Services and Social Sciences Review, 16 (3) This article draws on in-depth qualitative interviews with ten practitioners who specialise in working with young carers, to examine how members of the emerging profession of ‘young carers’ worker’ view their partnerships with social services. It focuses particularly on one case study area (Town Z), where partnerships between social services and the voluntary sector around young carers were relatively highly developed. It explores the practitioners’ comments about the impact of their organisations’ partnerships with social services on their work. This is done in the context of their conceptualisations of care and family relationships. In particular, the themes of identifying young carers and working with the family as a whole are discussed, and young carers’ workers views are compared to the conceptualisations that come across in literature from both disability studies and social work perspectives. It is concluded that young carers’ workers conceptualisations of care and disability do differ markedly from the perspectives that appear to dominate both social work theory and practice, and that this is impacting on how the former view their partnerships with the latter. Heyman, A and Heyman, B (2013) ‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer. Health, Risk Society, 15 (6-07): 561-579

In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such concern is predicated on cultural assumptions, now being 304

undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a timelimited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation (Beck and Beck-Gernsheim, 2002; Beck 1992; Giddens 1991); transition to adulthood in late modern society (Roberts, 2012; Roberts, 2007; Wyn and Woodman, 2007); and risk management for those deemed vulnerable (Alaszewski, 2013; Spencer, 2013; Thing and Ottesen, 2013).

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Appendix 2: Question schedules for young carers’ workers, and young and young adult carers Schedule for interviewing young carers’ workers

(Which year did you start working with young carers?)

1: How many 16-21 year olds come in to the project regularly (including volunteers)?

2. What sort of things do they ask for help with?

3. Who else do you partnership/joint work with?

4. Who else do you signpost carers to?

5. Do schools have an approach to the transitions/careers advice needs of young carers?

6. Thinking of the time from when you started working with young carers as compared to now: do you think that the client-group of young carers’ centres is changing over time (e.g. age of young carer, type of need)?

7. Do you think there is a typical set of circumstances whereby a young person becomes a young carer, or is every case different? 3

3

The round 1 schedule did not contain this question which was added in response to data received in this round.

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Schedule for interviewing young and young adult carers (first round)

1. How old were you when you first started doing care tasks by yourself including supervising your family member and helping them get to places? What sort of care tasks were you doing between age 16 and 21? What did you learn from that? 2. Did you go to anyone outside of the family to talk about the fact that you were carrying out these tasks and any issues related to caring? 3. What sort of things did you ask them for help with? (Did they help?) 4. How much did they help? 5. Did your school have an approach to the transitions/careers advice needs of young carers? 6. Did you know people of the same age who looked after their disabled parents/siblings? How did they compare to you in terms of the amount that they helped out? (If they pick up on females caring more than males, ask why they think this is). Schedule for interviewing young and young adult carers (final round) How many people live in your household? (Who are they?) What kind of disability does X have? (What sorts of things does he/she have difficulty doing for his/her self?) Anyone else in the house disabled or suffering from a long term sickness? Timeline exercise: I am interested in how families decide who is going to do what to whom when their disabled parents and siblings need help and assistance: Draw support network of the household. How much do you do and how much do other people in your family do when it comes to helping out? [Prompt for factor behind any recent changes].

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Do you have anyone outside of the family to talk to about the fact that you carry out these tasks? (How do help) (How have they helped in the past)? Did your school have an approach to the needs of young carers? What about your college? What about Connexions? I now want to find out more about the things that you do to help your parent/sibling: When you were younger, were there things that you wanted to do for your disabled parent/sibling but couldn't? Why couldn't you? (Prompt: time, information, understanding). Were there things that other people wanted you to do that you didn't do? (Prompt: time, information, understanding). What have you learnt overall through being a carer? How do you feel about the amount of time that you spend helping your disabled parent/sibling now? (Do you feel its too much, too little, just right?) (Why?) Do you know people your age in other families who look after their disabled parents/siblings? How do they compare to you in terms of the amount that they help out? (Prompt: If they pick up on the fact that females tend to do more caring than males, ask why they think this is). I would like to find out how your family as a whole is affected by disability: Do you find that you have enough time for coursework and revision? (If difficulties: do you find the college helpful or unhelpful?) Do you have enough time to get ready for work in the morning? Do you have enough time for socializing and spare time activities?

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Do your parents work? If yes: Have they always worked? (Why did they decide to go back to work?) If no: Have they ever worked? (Why did they give up work?) Do you ever have problems with other people's attitudes/ reactions to [X's disability]? Do you ever feel that people could do more to help? Plans for the future: What do you see yourself doing at 25/30? Where do you think you'll be living (prompt: own home, married, kids?) (For each substantive point made by the respondent prompt: What might help you? What might stop you?) Have you had any advice? When do you think you'll finish your education/training? Social services Any contact? Was it helpful?

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Appendix 3: information sheet and consent form for young and young adult carers

Would you be willing to talk to me in confidence about your family’s experiences of providing care?

Thank you for taking the time to look at this leaflet. I am a tutor at the University of Sunderland who is also carrying out a PHD about young people who care for/ help to care for disabled people in their family or people suffering from long term sickness. 

I want to find out how you balance your own needs in terms of relationships, jobs, and education with the any help or care that you give your family at home.



I would also like to find out whether things have changed in your family as you have moved from being a child to being a young adult.



Most importantly, I would like to find out whether colleges, youth project, carers' project, Connexions and other organisations could be doing more to help, or whether what they're doing at the moment is just right for you.

If you say “yes”, then I would like to get in touch with you to arrange a time and place that are good for you, so that I can come out and interview you. The interview will be very informal and focused around what you want to say about things that are important to you and your family, and the things that do or could really make a difference. It will last between half an hour and an hour. Anything that you say will be kept confidential (I will not share it with anyone and will not write down your name). Once I have interviewed 20-30 people I will look at everybody’s comments together and write a report to say what I have found out. I can then show the report to workers and trainees in colleges, youth project, carers' project, Connexions and other organisations, so that they can think about changing their ways of working, to better meet your needs. 310

I very much hope you will say “yes”, in which case I will look forward to hearing from you. However, if you want to say “no”, then that is fine too – it is entirely your choice whether you want to take part.Please fill in and return this slip to Anna Heyman, Post-graduate Academic Assistant for Social Work and Social Care, Priestman Building, University of Sunderland, SR1 3PZ or use the pre-paid envelope provided.

Name ……………………………………………………………………………………….

I would like to be interviewed for the research on young people who care for/ help to care for disabled people in their family

O - Yes O – No

Telephone number or email address: …………………………………………………….

Alternatively, you can get in touch with me by email, my address is: [email protected]

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Appendix 4: Ethics approval

UNIVERSITY ETHICS COMMITTEE

APPLICATION REVIEW FORM (RV1)

Application Number: 2008.105 Project Title: Barriers and enablers of self-efficacy in transitions to adulthood for young carers. CONDITIONS: These conditions must be completed before you commence the work.

APPROVED

RECOMMENDATIONS: The committee recommends the following are completed before the work commences. Note: If you require to make any significant changes to this approved protocol, you must apply for a new ethical review. Conditions have been completed…………………………..….……Date………… Chairperson

.

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Appendix 5: Extracts from sample transcript Carer interview ten

So firstly can I ask you, how many people live in your household?

Just me and me mother.

And when did your sister move out? (I already knew he had a sister)

Two years ago or over two years ago to study in [place X]. I did as well. But I came back in July of 2008 and I've been a registered carer since then. I've been caring for me mother.

And what were the reasons that you came back?

Em, it was personal, in that it was me, I didn't want to continue studying [there]. So me mother had been er getting this fund off the council and she'd been asking some people locally that she knew, just when she needed the help she would get it kind of thing. And she give ... the money for that but when I came down, I just took over the money every week kind of thing, just 7 hours, but obviously it wasn't as formal with me mother; I could go over that, under that, but quite often over but it was just – yeah I think we're on a tangent here.

No it's alright this is interesting: do you use some of the money to pay other carers or do you do all the care now?

I do any care work that needs done, kind of thing.

And roughly how much care did your mum need when it was sort of at its worst? (He had already told me that she was getting better).

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At it's worst, like she couldn't push the hoover round, she might not be able to stand for too long like to cook the tea or wash the dishes or whatever, so like when she's like that I obviously step in and take over and when she's not she likes to do it herself kind of thing. Like I do most of the, like I put up shelves everything like that that need done, obviously i would do it.

What about cooking the dinner and doing the shopping and things like that?

Yeah I mean normally I do the shopping and then me mother'll pick is up kind of thing. Like I go round the shops, put the shopping away.

So she can stay in the car rather than having to come out of the car and then get Aye – yeah I would say more often than not. Obviously lately, the past few months in particular, she's been absolutely fine, I mean - her condition was kind of onset, she was working as a community worker in [estate X], quite a deprived area and it was a pastoral care organisation called [Trust X], and basically they had all manner of er social problems come to their front door, kind of thing. Like anyone, any problem, who didn't know how to fix it, it was always stress about paying the rent or whatever – a whole myriad of things and she was there for about 7 years or so and just day in day out having to deal with all these problems, so it was obviously very stressful environment and it brought on the onset of her condition, which is rheumatoid arthritis. It had been building slowly for over those years, but I think she's been out of that job two years now and I think to be honest she's looking to do something. She's sick of being idle. And she doesn't need me help as much as she used to, so that's kind of nice.

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Appendix 6: procedure to protect all respondents at the level of a 16 year old (as accepted by the ethics committee).

Risks and Hazards What do you consider are the risks to the subjects? Although aged over 16 many respondents will still be in a vulnerable position within the family or be struggling to come to terms with issues from their recent childhoods. There is a small possibility that the young people may, during interview, disclose for the first time any of the following: current or past abuse, neglect or some other risk to their health, welfare or development. There is also a risk that simply talking about such issues (whether or not they have been previously disclosed to professionals at an earlier date) may cause emotional distress or a resurfacing of psychological trauma. State precautions to minimise the risks: In most cases, a professional contact person will have approached the young carer on the researcher’s behalf and will have passed on information about their situation, which should allow the researcher to pay particular attention to the way that she asks certain people about certain topics. If any disclosures are made that raise the prospect that the young person may be at risk then the researcher will ask them if they have discussed the situation with anybody and what was done about it. If it emerges that the issue has not be dealt with at all/sufficiently then the researcher will ask the young person’s permission to take the issue up with an appropriate professional - I anticipate that this would usually be the person through whom the researcher contacted the young person unless there is some reason that this would be inappropriate, in which case the researcher would identify a more appropriate professional linked to the service or college, or if this would also be inappropriate, then the researcher would seek advice from qualified professionals working in the university. What discomfort (physical or psychological) danger or interference with normal activities might be suffered by the subject? None – other than that which has already been discussed above.

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