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Journal of Intellectual Disability Research 342

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families over the life courseG. Grant et al.

Supporting families over the life course: mapping temporality G. Grant,1 M. Nolan1 & J. Keady2 1 School of Nursing and Midwifery, University of Sheffield, Sheffield, UK 2 School of Nursing, Midwifery and Health Studies, University of Wales Bangor, Bangor, UK

Abstract Background The present paper addresses a rather neglected dimension of family caregiving, its temporality. Many accounts of caregiving assume a state of stasis, and therefore, overlook factors which shape the evolving experience of family caregiving over the life course. Methods The paper begins by offering some reflections on theoretical and methodological issues identified by life-course researchers. Results Based both on theoretical propositions and a growing body of empirical evidence, this paper offers a heuristic for thinking about caregiving stages applied to families supporting people with intellectual disability. Conclusions This heuristic is used to suggest further avenues of research and development. Keywords life course, mapping temporality, supporting families

Introduction Epistemological and methodological issues concerning research and the life course have come under Correspondence: Gordon Grant, School of Nursing and Midwifery, University of Sheffield, and Doncaster and South Humber Healthcare NHS Trust, Samuel Fox House, Northern General Hospital, Herries Road, Sheffield S AU, UK ([email protected]).

©  Blackwell Publishing Ltd

increasing scrutiny in recent years (Adam ; Rutter ; Giele & Elder ; Fingerman & Hilkevitch Bedford ; Levitt ; Mayer ; Mills ; Heinz & Kruger ) since the landmark contributions of Elder () and Zerubavel () more than  decades ago. On the one hand, this appears to reflect a greater appreciation of different time constructs and how these may help to improve an understanding of human behaviour, and on the other, a recognition that different disciplines have a role to play in this, most notably sociology, social anthropology, demography, developmental psychology and social geography, especially where they can work together (Mayer ). However, much of the life-course literature is still discipline-bound. For example, the considerable volume of research on child development is frequently underpinned by work on attachment theory as the route to understanding links between parenting, family functioning and child development (Bowlby ; Sroufe & Fleeson ; Pianta et al. ). Despite such groundwork, it remains unclear as to how attachment classifications in adulthood might have evolved from infancy. Therefore, for example, we find that the formidable volume of research within social gerontology, much of it focused on social networks or social support, is often devoid of developmental perspectives which take account of earlier life-span influences. Some valiant efforts have recently been made to bridge such a divide by bringing child and human development specialists together with social

Journal of Intellectual Disability Research

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343 G. Grant et al. • Supporting families over the life course

gerontologists in an effort to synthesize ideas about the life course (Fingerman & Hilkevitch Bedford ; Levitt ). According to Mills (), life course research ‘focuses on how social processes such as the family, education, employment, health and migration domains are structured over the individual life span’ (p. ). Therefore, empirically, the focus here is on such factors as the occurrence, timing in life stage or age, sequencing, duration, or interaction among life events and domains, although there is an equal interest in seeking to comprehend how individuals also shape their own (and possibly other people’s) life course, introducing the notion of agency. In this sense, the life course should be distinguished from the life cycle which, according to Elchardus (, cited in Mills ), is a predictable circuit of life stages. For Heinz & Kruger (), the life course is ‘a major institution of integration and tension between individual and society that provides the social and temporal contexts for biographical planning and stock-taking as well as for ways of adapting to changes in public and private time and space’ (p. ). These writers argue that, with modernization proceeding apace in many countries around the world, lifecourse arrangements are becoming more dynamic and less predictable, but more self-directed. In such contexts, agency, and with it the linked notions of choice and control, is central to any understanding of the relationship between social change and biography. According to Heinz & Kruger (), ‘the trend towards destandardisation and increasing individualisation of the life course has been leading to more individual diversity in the timing of transitions, duration of institutional participation and sequencing of transitions’ (p. ). In contemplating life course research, commentators have used different concepts of time. For example, Zerubavel () differentiated private time, which is designed to prevent or discourage the formation of human contact and to separate people from one another, from public time, which is designed to achieve the opposite. Summarising much of the contemporary life course literature, Heinz & Kruger () suggested that there have been three main (temporal) research perspectives: historical time (generations and cohorts), individual time (life history and biography) and institutional time (careers,

sequences and transitions). Mills () further drew attention to natural or cosmic time, which is based on relatively fixed or cyclical rhythms of the natural environment, as opposed to biological time or psychological human development, which have other rhythms and trajectories. Drawing on Adam () and others, she additionally differentiated cultural time, referring to the subjective conception, use and meaning ascribed to temporality within different cultures, from social time, which includes norms, values and rules about the time at which life events are expected to occur. Finally, Mills () defined forms of time in relation to different institutional calendars, claiming that these are often neglected or underestimated. Amongst these are religious, family, educational, work/production and gender-based calendars. We might add the calendars of public, private and not-for-profit services to this list since they place a significant part in the lives of people with intellectual disability (ID) and their families. Of course, these calendars, or clocks, are ticking away in parallel, each with their own trajectories. In this sense, we begin to gain some idea of the complex of temporal factors shaping decision-making across the life course. Therefore, as Clausen () has suggested, the life course can be likened to a developmental process in which the individual moves from helpless organism to more or less autonomous person that ‘(a) takes place in a changing cultural, social structural and historical setting; (b) increasingly involves individual choices as to the action taken; and (c) almost always entails both continuities and discontinuities’ (p. ). The path(s) or courses taken are comprised of twists and turns which are the result of complex interactions between a ‘minded self’ and an environment. Using similar language, Rutter () reviewed the role of transitions and turning points in psychological life trajectories, suggesting that turning points be viewed as involving a lasting shift in direction of life trajectory. The above author suggested that, although there is convincing evidence of the reality of such changes, it is important to determine the extent to which it is the manner of the transition per se earlier in life that has a long-term effect and not just continuities in behaviour. He further suggested that there is a need to assess how the effect of one transition alters responses to some later transition. Rutter

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() is of the view that there is as yet little empirical evidence of such effects.

The life course and intellectual disability Interestingly, there are perhaps one or two examples of what Rutter () was driving at in recent research with parents with children with disabilities. For example, Scorgie & Sobsey () have identified a range of transformational outcomes associated with parenting. The above authors refer to these as personal transformations in relation to the acquisition of roles or traits, relational transformations with regard to family relationships, advocacy relationships, friendship networks and attitudes towards people in general, and perspectival transformations, which concern changes in how people view life. Importantly, though, Scorgie & Sobsey () make two points of direct relevance to the present discussion: () that such outcomes may not be so evident in research in which investigators examine only shortterm responses; and () citing Palus (), they suggest that, although challenging events and circumstances may produce negative results initially (e.g. disclosure of disability), positive outcomes are usually slower to be realized, enduring and of a higher order (e.g. a change in values or the ability to form satisfying relationships). Similar results have been reported in coping research on partners of men with HIV/ AIDS (Folkman ). Furthermore, Todd & Shearn () have shown how the parental career involves making many incremental changes over the years, and that its meaning is subject to re-evaluation as well as redefinition as its long-term implications are progressively revealed. Experience indicated that parents had indeed become ‘perpetual parents’, entrapped by the ticking away of different clocks and calendars which constrained their control and choice-making. The present authors return to this point below. Although most families ‘do their caregiving’ for many years, some until they die or can no longer cope, there is little knowledge about how family caregiving is influenced by different institutional calendars (Mills ; Heinz & Kruger ), or how these calendars influence the use of private and public time (Zerubavel ) over the life course. Drawing from Mills (), it is also suggested that little attention has been paid to the relationship between

cultural time (the meaning of time in different cultures) and social time (normative expectation about when life events should occur) over the life course in families supporting children or adults with ID. The net effect of these apparent deficits is that we are left to make sweeping assumptions about the interplay between agency and environment (Heinz & Kruger ) as influences in decision-making by families across the life course. By and large, family-care research has relied on temporal categorizations based on the chronological age or developmental stage of the child (e.g. Baker et al. ) or on rather arbitrary, age-based groupings of parents (Grant & Whittell ). The danger is that caregiving comes to be construed as a response to or a typification of these categorizations, rather than as something that is shaped by the wider constellation of life course factors considered earlier. However, there is an emergent body of research that has attempted to map constructions of family caregiving along pathways which tell us something about contingencies and contexts, as well as the purposes and outcomes of this endeavour (Bowers , ; Nolan, Grant & Keady ; Seddon ). In the remaining part of the present paper, the authors consider one such model in relation to the lived experiences of families with children or adult members with ID. However, their purpose in doing so is to make some links to other life-course calendars in order to identify further prospects for research and development.

Mapping temporality in family caregiving Tasks (Parker & Lawton ), functions (Bowers , ; Lewis & Meredith ; Wenger et al. ) and norms (Finch & Mason ) all permeate discussions about constructions of caregiving. For this reason, there is no universally agreed definition of family caregiving. However, some of the literature provides insights into temporal aspects of caregiving. Bowers’ (, ) work in dementia care led to the development of a caregiving model that linked caregiving purpose to the stage of dementia. The types of care which emerged were termed ‘anticipatory care’, ‘preventative care’, ‘supervisory care’, ‘instrumental care’ and ‘protective care’. Although distinct, these were all viewed as overlapping. Nolan et al. (, ) have applied and extended this


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Journal of Intellectual Disability Research 345 G. Grant et al. • Supporting families over the life course

Table 1 Family caregiving stages

References Variable

Bowers (1987, 1988)

Seddon (1999)

Nolan, Keady & Grant (1995)

Caregiving stage

Anticipatory care Preventative care Supervisory care Instrumental care Protective/preservative care

Managing uncertainty Trial and error Getting to grips Establishing the upper hand Keeping going

Premise

Understanding caregiving purpose

Reappraising changing conditions, needs and responses

Building on the past Recognizing the need Taking it on Working through it Reaching the end A new beginning Caregiving as transactional and requiring cumulative expertise

model, suggesting two further elements, i.e. (re)constructive care and reciprocal care. (Re)constructive care is concerned with a family caregiver’s efforts to help their relative to construct or reconstruct a role or purpose, or to locate a sense of identity in the face of their difficulties. Reciprocal care highlights the importance of sustaining give and take in relationships so that feelings of indebtedness do not arise. Although Bowers’ (, ) work did not set out to provide a temporal account of caregiving, it can be looked upon in this light. Two other models which perhaps had more explicit temporal perspectives threaded through them were developed by Seddon () and, again, Nolan et al. (, ). Once more, both come from dementia care where there is great interest in understanding how family carers over time recognize and deal with the new and changing symptoms and behaviour of their relative. Seddon’s () model was developed as part of a study concerning the ways in which family carers strove to balance caregiving with employment. Demonstrating that this is not resolved at a single point in time, but rather, by a continuing process of response to the changing conditions in which carers find themselves, and the success or otherwise of their coping, the above author identified ‘key transitions’ signposting types of assistance that were most useful at a given point. These were termed ‘managing uncertainty’, ‘trial and error’, ‘getting to grips’, ‘establishing the upper hand’ and ‘keeping going’. Similarly, Nolan et al. (, ) devised a stage-based classification of family caregiving based on a recognition of two sets of processes: () the transactional nature of caregiving and () the development of caregivers’

expertise over time. However, in analysing these processes, transition points were discernible which appeared to reflect a shift to a new stage. These were termed ‘building on the past’, ‘recognizing the need’, ‘taking it on’, ‘working through it’, ‘reaching the end’ and ‘a new beginning’. In outlining these models (Table ), the present authors suggest that they be looked upon as work in progress rather than definitive. However, although they each appear to be based on different ways of looking at caregiving, they seem to share certain features: • initially family members may not be aware that they are ‘caring for’ someone else; • transitions in perceived caregiving competency can be discerned; • the stages provide some insights into factors shaping agency and expertise; • passage through all the stages may be incomplete (because of death or role changes); and • under certain circumstances, the stages may be largely predictable. In offering some further detail about the third of these models by drawing on literature from the child health and ID fields, the present authors seek to make some connections with other dimensions of the life course so as to identify challenges and prospects for further research.

Building on the past (before caregiving begins) It may seem paradoxical to suggest that there is a caregiving stage before caregiving begins. However, the emergence of the human genome project, and the



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development of genetic counselling and improved prospective health screening have created a climate of increased interest in and awareness of genetic and environmental factors associated with disability and life-threatening conditions (Pilnick et al. ). Families are becoming increasingly sensitized to risk factors for ID. This can have major consequences for families as they begin to contemplate alternative risk scenarios in the light of family histories, preconceptions and coping resources: hence, the notion of ‘building on the past’. At this stage, families, particularly prospective parents, might be depicted as ‘caring about’ their as yet unborn or even unconceived child, as well as themselves. They typically engage in a lot of cognitive work in which ethical and philosophical tussles about human life and the right to life predominate. Ethical frameworks to guide decision-making are a major consideration here, together with good information and access to sound professional advice. However, it seems that there is still a lack of consensus about how the counsellor role and the counselling process should be characterized in this context (Pilnick et al. ). Given that family members may also want to keep knowledge about hereditary factors within a close network of family and friends, decision-making is likely to be a byproduct of family socialization where culture and tradition may shape outcomes. This perfectly mirrors the tensions between private and public time which Zerubavel () and Heinz & Kruger () described. The management of private and public time by families in this context is far from being well understood. Anticipatory though it may be, this type of activity engages the hearts and minds of prospective parents very fully (Edelson ), but its very nature may render it invisible to third parties, including those with a professional interest in supporting families. Therefore, it is easy to understand how the ‘precaregiving’ support needs of families in these circumstances can be overlooked. However, there is evidence to suggest that ‘anticipatory care’ (Bowers , ) is something that remains with families throughout the life cycle (Grant ; Todd & Shearn ; Prosser ), meaning that, whilst issues are having to be worked out in the present, they are often concerned with major, potentially lifechanging circumstances in the future predicated on

the need to restore structure, certainty and meaningfulness in the lives of family members.

Recognizing the need ‘Recognizing the need’ arises when families become aware that they have become or are about to be responsible for the care of a child with disabilities. This often occurs at the time when disclosure of disability is made, typically by a paediatrician or other health care worker. This can present as a form of ‘biographical disruption’ (Bury ) where normative expectations about the present and the future, or social time in Mills’s () terms, are thrown into a state of confusion. Despite good practice guidelines for disclosure and early counselling, Cunningham () reported that there continue to be problems with the manner in which information is conveyed, with the information itself, and with organizational aspects of the arrangements. Family narratives confirm this (Mittler ; Edelson ; Murray & Penman ), and further suggest that fathers, close kin and associates can be easily neglected in the process. The lasting effects of disclosure and the mediating factors involved are still not well understood. However, in their study of how mothers resolved their disabled child’s diagnosis, for example, Pianta et al. () have even suggested that ‘parents must eventually focus attention on the present and future, maintain an accurate, undistorted view of the child’s skills and abilities, hold a balanced view of the impact of this experience on themselves, and regulate their affective experience’ (p. ). Integrating these perspectives within one’s own sense of biography and against an emergent script about one’s own child whose future from a state of infancy may be less than clear would appear to take considerable cognitive skill that only few parents may possess. For some families, disclosure is not a singular event. There may be delayed recognition where diagnosis is not clear, leaving families to make sense of shifts in patterns of symptomatology and behaviour. Such a ‘diagnostic limbo’ between suspicion and confirmation can be extremely stressful (Edelson ), and may recur with the onset of new, hitherto undiagnosed conditions over many years. In turn, this gives rise to further anxiety, unpredictability and stress likely to test even the most resilient of families.



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In fact, Todd & Shearn () have referred to the entire parenting career as ‘improvised’, suggesting that there are few fixed rules and norms to follow. This is certainly the case during this phase where learning is largely experiential. ‘Recognizing the need’ would readily fit Rutter’s () conception of a ‘turning point’, one from which there can be no turning back.

Taking it on Having come to accept the reality that their child has a lifelong disability and made a conscious decision to ‘take on’ caregiving, parents enter territory where instrumental and supervisory care (Bowers , ) is necessary, this perhaps being more readily equated with ‘manifest’ caregiving activity. It is during this stage that families begin to discover the usefulness of routines and structures for managing care at home (Glendinning ). The strength of previous ties with spouses or partners may be severely tested under these circumstances, and may even predict family cohesion. In these relatively early stages, parents may doubt their own problem-solving capacities (Grant & Whittell ) as if to underline their status as ‘novice’ caregivers. Because of the weight of organizational and family care management demands on their shoulders, parents can perhaps too easily begin to feel isolated and marginalized: their obligations towards the extended family and friends may become compromised; and they may face opportunity costs in relation to careers, employment, hobbies and in their wider social relations, none of which will be helped by gaps in or waiting lists for important family support services such as respite, short-term care and in-home support (Stalker ; Cotterill et al. ). During this phase, parents may also struggle to maintain a sense of normalcy as they begin to discern differences in what they are required to do compared to their peers (Todd & Shearn ) at a similar stage in the life cycle, once again underlining the relevance of social time (Mills ). Such early experiences may well shape a family’s views of prospects for social inclusion for their child and themselves. There are still too many accounts from families reporting that their children or relatives are ‘hard to place’ or, even worse, have been rejected by services. Families cannot be blamed for retrench-

ing under such circumstances. By contrast, if they are to be liberated in ‘taking it on’, they need to feel prepared for the role, be able to set limits on what they can do, know what the outcomes are likely to be, and be aware that the role of services is to support, relieve or empower them (DoH , ). This illustrates the need for the family caregiving cycle and the institutional calendar (Mills ) of services to be brought into closer alignment with regard to the timing, sequencing and responsiveness of supports for families.

Working through it The ‘working through it’ stage connotes a proactive stance by families to establish a sense of coherence (Antonovsky ) in managing their affairs. Lying at the heart of this endeavour seem to be forms of ‘biographical’ work by families aimed at sustaining or promoting the identity, dignity and personhood of their growing child. Qureshi et al. () have more recently reported family carers as identifying these and other factors as important outcome goals in caregiving, strides towards which provide families with a sense of fulfilment and reward (Beresford ; Nolan et al. ; Grant et al. ; Stainton & Besser ; Scorgie & Sobsey ). As stated earlier, these ‘transformational’ outcomes (Scorgie & Sobsey ) may take time to be realized, and may not be obvious to parents and families at an earlier stage. Furthermore, as families begin to realize the links between what they do (processes) and what they are beginning to achieve (outcomes), even at the level of discrete tasks such as lifting, bathing or simply managing everyday communication with their child, they can quickly establish an awareness of their own expertise and insights. Professionals may not always recognize such expertise in families, or if they do, they can too easily defer to it without either properly acknowledging or reinforcing it (Grant & Whittell ). In this sense, families, particularly parents, may find their dependency on private time (Zerubavel ) being inadvertently reinforced by the asynchronous clock of the service system. During this stage, families seem to become particularly adept at the art and craft of caregiving. One of the ways in which they seem to manage this is by keeping to a minimum their growing child’s aware-


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ness of the many things which are often done on their behalf so as to enhance their child’s autonomy and sense of self-esteem. In this regard, private time has high functionality. This seems to have parallels with what Bowers (, ) termed ‘preservative’ care, where the driving force behind caregiving is tied primarily to maintaining as much of the person’s sense of ‘self’ or identity as possible. Despite these accomplishments, families still face difficulties balancing employment and care (DoH ; Shearn & Todd ; Warfield ). It remains the case that unfavourable labour market conditions (especially for women) and the absence of family advocacy influence both employment prospects and the quality of care at home. Hence, calendars reflecting the interests and expectations of employment, care services and family caregiving are still far from well synchronized, leaving families facing life course discontinuities.

Reaching the end As families enter the twilight of their commitment to caregiving, they have been reported to experience increased reciprocities with their now-adult child with ID (Heller et al. ; Williams & Robinson ), which appears to give rise to a heightened sense of caregiving enrichment. This may be linked to findings that older carers seem, on the whole, to be less stressed than younger carers (Seltzer & Krauss ), lending support to the adaptation hypothesis connected to ageing. Studies have also shown older family carers making heightened use of cognitive coping strategies such as making use of favourable comparisons, reliance on personal beliefs or religion, or resignation as means of passing off caregiving challenges (Grant & Whittell ). In addition, although the support networks of families may experience a significant change in membership, if not shrinkage, at this later caregiving stage, there is compelling evidence that these show adaptability in supporting people with ID, even when parents are forced to relinquish care (Bigby ). Balanced against this, family plans for the continued care of the (adult) child with ID at home can be fragile and prone to change, with financial and legal details often left unclear (Prosser ). Therefore, although there is some growing support favouring the adoption by families of a social time perspective

(Mills ), there is little evidence as to its correspondence with cultural time as yet. Nevertheless, there is also good evidence to suggest that it is better for parents to ‘let go’ of their offspring under more normative conditions (Essex et al. ), i.e. at an earlier stage in the caregiving cycle more typical of when young people leave the family home, rather than at a postponed stage or when families face a major crisis.

A new beginning? After ‘letting go’, parents and families frequently find that support services evaporate, and that the knowledge, expertise and insights which they have accumulated over a lifetime are suddenly marginalized. Even when a move is made into a permanent home or independent care by the person with ID, families continue to ‘care about’ them, even though they may have relinquished ‘caring for’ them. This means that there is a normative expectation about maintaining some involvement, albeit on a shared basis, but also from a considerable knowledge base (Bigby ). Families may wish to retain some involvement as care manager or as arbiters of care standards in those settings where their relative has been placed. If person-centred planning is to be realized, then the postparental phase of caregiving is one in which parents or other family members still have a valued and legitimate role, as long as this is what their relative wants.

Discussion Although the present authors have utilized one particular model of family caregiving to identify what appear to be key temporal stages, they have done so in an attempt to suggest areas where interactions with other life-course calendars might benefit from further reflection or research. Here the authors offer some final observations about the caregiving model as one way of underscoring the importance of temporal factors. They then outline the utility of exploring further the possible links with other life-course calendars. The assumption that families may not necessarily be aware that what they are doing is caring was borne out especially in the ‘before caregiving begins’ stage. However, we can add to this that professional awareness of the more invisible components of family caregiving was discernible at different stages, suggesting


    ⁄ ⁄  


that families may not receive the support from services that they need at these points. Secondly, each of the stages in the model is identifiable and, up to a point, predictable. One of the more important findings to emerge here is that, just as some commentators have argued (Scorgie & Sobsey ), key transformational outcomes can take time to emerge and may not be so evident early on when stresses within the family may be more in evidence. Although the model needs to be more thoroughly tested in larger and more diverse samples of families, its predictive capacity could be of practical value to families and professionals. In this respect, it may help to remove some elements of uncertainty or ambiguity about the course of family caregiving in people’s lives. Thirdly, it is possible to discern shifts in caregiving expertise and experience associated with the different stages in the model, although space has precluded a fuller exposition of evidence about this, and prospective family studies would be necessary to test how quickly families might move through each stage. Fourthly, the final stage posited in the model, i.e. ‘towards a new beginning’, is possibly the one most neglected by services despite having a very real resonance with families. With increasing plurality in the supply of services, individuals and families will encounter many transition points as they move between health, education, social care, employment, housing and independent sector services during the course of their lives. In doing so, they and their families are likely to experience different service cultures and philosophies, the effects of which on people’s everyday lives are still not well understood. Hence, in reality, families are faced with a whole sequence of calendars generated by services as well as by the institutions of civil society. Following Heinz & Kruger (), this would appear to place a premium on getting right the timing of transitions, the production of conditions favouring appropriate institutional participation, as well as continuity and predictability over the life course. How far this is possible given the de-standardisation and increasing individualization of the life course that the above authors discuss remains to be seen. The meaning of social time for families from different cultures is far from well understood. Links between family caregiving stage and intra-family ties, intergenerational ties and migration all seem worthy

of further exploration (Wenger et al. ) set against the biological, physical and developmental clocks of the person with ID. Further research effort could be directed at analysing the conditions under which smooth transitions can be made by families from one stage of caregiving to the next and whether, going back to Rutter (), experiences of going through one transition affect responses to later transitions. In particular, the outcomes of such transitions on parental and family decision-making can obviously have life-altering consequences for the person with ID throughout their lives. Short-term research imperatives and limited research horizons unduly influenced by national policy priorities frequently preclude the scope for lifecourse research. Prospective research designs in this context are still rare. This reinforces a dependency on life history or retrospective research as vehicles for elucidating the importance of temporal factors in the life course which shape the experience of family caregiving. Prospective family studies which take account both of new cohorts, and of social and cultural time (Mills ) are needed to capture the diversity of caregiving experiences so as to address the central issue of continuities and discontinuities in people’s lives and how these are best negotiated.

Acknowledgements The authors would like to thank the anonymous reviewers who made helpful comments on an earlier draft of this paper.

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Accepted  February 
