Mothers' experiences of parenting a child with attention deficit ...

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JOURNAL OF ADVANCED NURSING

ORIGINAL RESEARCH

Mothers’ experiences of parenting a child with attention deficit hyperactivity disorder Kathleen Peters & Debra Jackson Accepted for publication 27 August 2008

Correspondence to K. Peters: e-mail: [email protected] Kathleen Peters PhD RN BN Lecturer School of Nursing, College of Health and Science, University of Western Sydney, New South Wales, Australia Debra Jackson PhD RN Professor of Nursing School of Nursing, College of Health and Science, University of Western Sydney, New South Wales, Australia

P E T E R S K . & J A C K S O N D . ( 2 0 0 9 ) Mothers’ experiences of parenting a child with attention deficit hyperactivity disorder. Journal of Advanced Nursing 65(1), 62–71 doi: 10.1111/j.1365-2648.2008.04853.x

Abstract Title. Mothers’ experiences of parenting a child with attention deficit hyperactivity disorder. Aim. This paper is a report of a study to explore the perceptions and experiences of mothers parenting a child with attention deficit hyperactivity disorder. Background. Previous quantitative studies have focussed on parenting styles and treatments, and highlight that attention deficit hyperactivity disorder has a negative impact on family functioning. However, fewer researchers have explored maternal experiences of parenting a child with this disorder. A narrative-based feminist approach can provide greater insights into complex issues related to mothering a child with this disorder. Method. Data were collected in 2007 with a volunteer sample of 11 mothers of children with attention deficit hyperactivity disorder via in-depth interviews. Analysis was completed by listening for self-evaluative statements, paying attention to meta-statements and by identifying both consistencies and incongruities within participant’s narratives. Findings. Dominant issues identified were: It’s been 10 years of being on edge: The caring responsibility as overwhelming; If I had my time over again, I wouldn’t tell the truth: Stigmatized, scrutinized and criticized; What have I done? What did I do? How come I’ve got this child: Guilt and self-blame and He doesn’t stand a chance: Mother as advocate. Conclusion. Mothering a child with attention deficit hyperactivity disorder is stressful and demanding, and mothers felt marginalized. Media portrayal of this disorder contributes to confusion related to causes, diagnosis and treatment choices. More education for healthcare professionals is needed to enable them to give appropriate guidance and support to enhance outcomes for children and their parents. Keywords: attention deficit hyperactivity disorder, experiences, interviews, mothers, nursing

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2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd

JAN: ORIGINAL RESEARCH

Introduction Attention deficit hyperactivity disorder (ADHD) is a chronic neuro-developmental disorder thought to affect approximately 3–7% of children (Mattox & Harder 2007), with a higher prevalence among males (Singh 2004). The disorder is associated with a number of problems including conduct and learning disorders and mental health difficulties (Monastra et al. 2002), and is generally diagnosed on the basis of three factors: attentional deficits, hyperactivity and impulsivity (Chan et al. 2005). Treatment approaches include use of stimulant pharmacotherapy, dietary modifications and supplements, behavioural interventions and counselling (Hardy et al. 2004, Smoot et al. 2007). Parenting a child with ADHD can have a negative impact on family functioning, emotions and can create greater demands on parenting (Sawyer et al. 2000, Seipp & Johnston 2005).

Background The majority of previous research into ADHD has involved quantitative methods, and largely focuses on diagnostic practices (Chan et al. 2005), parenting styles (Ghanizadeh 2007, Jones et al. 2007), child treatment (Smoot et al. 2007) and child behaviour (Holmberg & Hjern 2008). Furthermore, most of these studies stem from the disciplines of psychology, sociology and medicine, with a scarcity of literature from a nursing perspective. Findings from qualitative studies confirm that a diagnosis of ADHD has a negative impact on all areas of children’s lives (Travell & Visser 2006, Shattell et al. 2008). Researchers exploring parenting experiences have also found that mothers parenting a child with ADHD experience stress (Baker & McCal 1995) and depression (West et al. 1999). Furthermore, mothers of a child with ADHD suffer emotional stress because of self-blame, perceived blame from others (family members and teachers) for their child’s disorder, and lack of family support (Harborne et al. 2004). Mother-blaming is central to a child’s ADHD diagnosis and use of pharmacological treatments (Singh 2004). In addition, Taylor et al. (2006), suggest that in an attempt to make the right decision for their child about the use of medication, parents progress through several stages. Throughout these stages, parents are faced with the differing societal attitudes about the use and value of pharmacotherapy for ADHD (Taylor et al. 2006). Elsewhere we have presented findings about mothers’ thoughts and experiences associated with medicating children because of a diagnosis of ADHD (Jackson & Peters 2008). Their experiences were revealed as confusing for mothers, fuelled by negative public

Parenting a child with ADHD

perceptions of pharmacological treatment for ADHD (Jackson & Peters 2008). Further to these findings, in this current study we offer a more holistic view of what it is like to mother a child with ADHD, rather than focussing purely on decisions about pharmacological treatment. Gaining broader understandings of maternal experiences might enhance nurses’ ability to deliver holistic care to mothers of children with ADHD. The value of using a narrative-based feminist approach is that it can provide in-depth information and promote greater insights into complex issues related to mothering a child with ADHD. Much of the work of mothering remains invisible and is often minimized and considered a part of women’s everyday life, but feminist research has the capacity to ‘illuminate, substantiate and authenticate women’s experiences, concerns and ways of being’ (Jackson & Mannix 2003, p. 31). The validation of women and their ‘work’ through using feminist methods is highlighted by previous studies revealing unique insights into the concerns and experiences of motherhood (Jackson & Mannix 2003, 2004).

The study Aim The aim of the study was to explore the perceptions and experiences of mothers parenting a child with ADHD.

Design This qualitative study was informed by feminist perspectives, as indicated above (Cook & Fonow 1986, Tong 1998). These perspectives encourage researchers to work with women, rather than simply study them, and take into consideration the impact of research procedures on participants. To this end reciprocity formed the basis of collecting narratives about experiences of mothering a child with ADHD, as reciprocity in research aims to diminish power inequalities between the researcher and the researched (Kleiber & Light 1978, Stanley & Wise 1983). Furthermore, the process of listening to an individual’s story is a reciprocal process and attributes value to the storyteller (Frank 1995). Therefore, listening to women’s stories about mothering a child with ADHD validates these women, and provides an opportunity to promote social change in attitudes regarding this disorder.

Participants Participants were recruited via a media release and snowball sampling. The media release invited potential participants to


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contact the research team for further information about the study. During initial contact, eligibility to participate in the study was determined, after which participants were sent an introductory letter, information sheet and consent form. Participants who fulfilled inclusion criteria were mothers who: were primary carers of children with a medical diagnosis of ADHD, could converse fluently in English, and lived in urban areas of New South Wales, Australia. Once the signed consent form was returned, an appointment for the participant to be interviewed was made. Typically, small sample sizes are required for qualitative studies and ‘sample size should be determined based on informational needs’ (Polit & Beck 2008, p. 357). Therefore, recruitment continued until data saturation was reached.

Data collection Data were collected in 2007 from participants via in-depth interviews approximately 1–2 hours in length. Interviews took place in a private location on one of four university campuses. Women were initially asked to ‘Tell me a little bit about yourself and your family’. If prompting was required to initiate further conversation, open-ended questions such as ‘What was it like for you before your child was diagnosed with ADHD?’ and ‘How did your family react to the diagnosis?’ were used. Interviews were digitally recorded and transcribed verbatim. All participants were given pseudonyms to ensure confidentiality, and were offered a summary of the findings if they wanted information about the outcomes of the study.

Ethical considerations This study was approved by the relevant ethics committee. Prior to interview, all of the women gave their written informed consent. Before giving informed consent, participants were given an information sheet that clearly stated the aims of the project, the inclusion criteria, the confidential nature of their participation and what was required of them if they chose to participate. This information sheet also stated the voluntary nature of the research, and emphasized that participants were free to withdraw from the study at any time without obligation.

Data analysis We initially immersed ourselves in the transcripts to allow individual participants’ concerns to become apparent. Analysis was guided by the work of Anderson and Jack (1991), who suggest three ways of listening to women’s narrative: 64

listening for self-evaluative statements that highlight relationships between self-concept and accepted cultural norms; paying attention to meta-statements (where participants stop, reflect and comment on their reflection); and identifying both consistencies and incongruities within participant’s narratives.

Rigour Rigour was enhanced by scrupulous handling and presentation of the data by experienced researchers. By listening to recorded interviews whilst simultaneously checking the transcripts, accuracy in the translation of both context and spoken word was ensured. Dependability and credibility were established by analysing the transcripts separately, comparing our findings and then revising these findings until consensus was reached. This prevents manipulation of the data by one researcher (Koch 1994). Furthermore, confirmability is achieved by showing how interpretations are arrived at (Koch 1994, Polit & Beck 2006). Confirmability in this study was achieved by using direct quotes from interview transcripts to guide readers through the research process and to how conclusions were drawn.

Findings Eleven women who were mothers of children diagnosed with ADHD volunteered to participate in the study. These women ranged between 30 and 60 years of age and their children diagnosed with ADHD were between 3 and 15 years of age. Four women were single parents and seven were in partnered relationships with the father of their child (Table 1). The results of this study revealed that participant mothers were exhausted by their mothering roles and overwhelmed by the unrelenting demands of their children. They experienced Table 1 Participant information

Pseudonym

Family structure

Gender of child

Age of child at time of interview (years)

Fiona Tina Simone Kristy Susan Cecilia Rhiannon Peta Theresa Gail Diana

Single parent Single parent Partnered Partnered Partnered Single parent Partnered Partnered Single parent Partnered Partnered

Male Male Male Male Female Male Male Male Male Male Male

14 8 11 10 7 17 18 7 8 8 10



minimal practical support from family, friends or community services. People were reluctant to babysit or involve these women’s children in social activities, and this was attributed to the child’s challenging behaviours. The results were clustered into the following themes, which are discussed in detail below: • It’s been 10 years of being on edge: The caring responsibility as overwhelming. • If I had my time over again, I wouldn’t tell the truth: stigmatized, scrutinized and criticized. • What have I done? What did I do? How come I’ve got this child: Guilt and self-blame. • He doesn’t stand a chance: Mother as advocate.

It’s been 10 years of being on edge: the caring responsibility as overwhelming The demands on these mothers were unrelenting and they experienced the maternal caring role as overwhelming, frustrating and difficult:


They were often restricted in their social activities and rarely had time to themselves. Even long-standing friendships were placed under strain and did not always survive the pressure of dealing with negative behaviours associated with ADHD. In reflecting on the loss of a very close friendship, Peta commented: She said, look I can’t do this anymore, I just can’t bear our children together anymore and she just wanted to have a relationship with me but leave our children out of it. I totally understand where she was coming from but I was just devastated.

These women had almost sole responsibility for the care of these children, despite the presence of partners. Although they stated that they would enjoy having some respite, finding someone to look after these children proved to be difficult. Acceptance was also difficult to find in professional childcare settings, with carers often unable to manage the child’s behavioural difficulties: He was going to childcare 2 days a week. Then he went onto preschool. The preschool I had him in, they didn’t know how to handle him. I kept

As a mother I think it is very stressful. Very frustrating. If I had to

getting calls from the school. Come and get him. He’s misbehaving. He

sum it up in one word, it is just frustration all around. You go

was suspended for a day, even through preschool. (Tina)

through periods where you feel completely inadequate because you can’t resolve it and because you are being pulled from here to there to try and fix, to try and get everything done that needs to be done for him. (Theresa)

The need for constant surveillance was paramount in these mothers’ stories, as their children diagnosed with ADHD had the potential to be destructive: He [son] would get up in the middle of the night and he’d just trash the house. He was just hyperactive all the time. Just strange behaviour. Would not go to sleep at night. Would take hours to

As a result of a lack of resources available at school to cope with the children’s learning needs and their challenging behaviour, some mothers felt obligated to school their children at home. Apart from a lack of support to ensure quality education, this created further anxiety for mothers, who feared fostering maternal dependency as well as a lack of age appropriate socialization for their children. These mothers felt the relentless pressure of the constant attention and discipline required to ensure the best possible outcome their children with ADHD:

get him to go to sleep. He’d get up and he would – I had a lock on the

It’s a long road. It’s always two steps forward and three steps back.

study door. He would drag a chair over, take the lock off and get in

But you get there eventually. So long as you stick with it. So you don’t

there and shut the door behind him and just trash the study. (Kristy)

stick with it and you’re not disciplined, then you make a rod for your

Foremost in these women’s stories was that caring for their children with ADHD was demanding and unremitting. The complex needs of their children meant that there were numerous competing demands, and participants felt overwhelmed in trying to meet them all:

own back. They’re very much children that you have to stay on top of. (Fiona)

The unrelenting responsibility of supervising their children affected their enjoyment of their motherhood experiences: Like in the books, most of them say you know, mothering ADHD

That’s one thing I found overwhelming, is not knowing what to

children is three times as hard as mothering kids without ADHD.

tackle first. There’s the learning difficulties, there’s the behavioural

(Gail)

issues, there’s his social issues and then his sensory overload issues and where do you start? We tried to do three or four therapies at once and the wheels fell off, it’s just too much. (Peta)

The difficult behaviour exhibited by their children had a negative impact on many aspects of these women’s lives.

Several expressed sadness and disappointment at missing, what they perceived to be, a normal parenting experience: Well, it’s made me more tense all the time. I’m always watching him. I can’t relax because I’m so worried that he’s going to do something.


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K. Peters and D. Jackson I feel like I need to be a much better mother with him than other

I wouldn’t [tell others] out of respect for [son] he doesn’t want me to

mothers get to be. They get to just enjoy their children. (Kristy)

tell people. So there’s no explanation really, other than that he’s

For these women, their mothering experience differed greatly from the perceptions of mothering they had previously held: I had an image of spending a lot of time playing games and things

being silly. People judge that. (Diana)

Other mothers expressed the wish that they had not disclosed their child’s ADHD diagnosis to other people:

with him and you know, watching him develop and interacting in

If I had my time over, I wouldn’t tell the truth, I would just say, he

positive ways and with him that are very difficult to do…I guess the

was in a terrible car accident and he’s lost his hearing and he’s partly

sides of parenting that most people take pleasure in, you get limited

deaf, so would you be nice to him. (Rhiannon)

pleasure from because it is just frustrating. (Theresa)

Contrary to enjoying their time with their children, many participants described feeling that the time spent with these children was more focused on preventing or arresting negative behaviour: You feel like you are just hen pecking him all the time, don’t do this, don’t do that. If you want people to play with you, you have got to

Participants were subjected to constant scrutiny about their parenting skills and management of their child’s behaviour. Tina’s son required consistent limit-setting in line with a behavioural modification programme, and she felt that people responded quite negatively towards her when she had to implement limits and boundaries outside the home:

learn these rules. You have got to learn that, you have got to do that.

The hard part is really, what you say, people looking at you and

(Theresa)

judging you for being so outspoken and thinking that there’s

The constant work of mothering a child with ADHD was draining, contributed to their feelings of dejection and anxiety, and had a negative impact on their health: Last year I got very depressed. I was ill. I was so stressed and I had depression on top of it… Because I’d say all of last year I felt terrible as well because I didn’t enjoy his [sons] company at all. I wished I’d never had him, felt guilty about it. I’ve never stopped loving him, but that’s different to liking him. (Peta)

If I had my time over again, I wouldn’t tell the truth: Stigmatized, scrutinized and criticized The women felt that they and their children were stigmatized by the ADHD diagnosis. There was a belief that ADHD is poorly understood, and that another explanation for the child’s behavioural problems would be more socially acceptable. Some of the women disclosed a sense that ADHD could be seen as an excuse, rather than a legitimate condition: There’s so much negative stigma with ADHD…people use ADHD as an excuse for bad behaviour. (Peta)

The stigma related to ADHD was so severe that some participants chose not to divulge their child’s diagnosis. Instead, they attributed behavioural difficulties to conditions they perceived to be less stigmatizing. Rather than disclose her child’s ADHD, Peta attributed her son’s behaviour to Asperger’s Syndrome, in the belief that there was more tolerance and a less judgemental stance for this condition. Diana and her son were also aware of the stigma attached to disclosing an ADHD diagnosis: 66

something wrong with you instead of the kid. I think they’re judging me. (Tina).

Paradoxically, participants disclosed that they were also often criticized for being too lenient with their children, with some suggestion that this lenience was the basis of their child’s poor behaviour. They said that they became accustomed to the multitude of criticisms they were subject to because of their children’s behaviour. However, feelings of being scrutinized and negatively judged had an effect on the emotional well-being of these mothers:

What have I done? What did I do? How come I’ve got this child? Guilt and self-blame Feelings of guilt, sadness and self-blame about their children’s ADHD diagnosis were evident in participants’ stories: I mean, it’s [ADHD] certainly my fault. I’m just not sure whether it’s genetically my fault or behaviourally my fault. (Susan)

Their feelings of self-blame were often exacerbated by perceptions of others: Like with ADHD, the first person you blame – you blame yourself. You think what have I done, what did I do, how come I’ve got this child? You’re judged by other people, like saying, you should be doing this and you should be doing that. Mum in particular says, he just needs a good smack. (Simone)

Some mothers expressed feelings of regret because of the meaning an ADHD diagnosis held for their child and the stigma to which it exposed them:


JAN: ORIGINAL RESEARCH So I’ve actually always regretted getting the diagnosis and wished that you go back and undo it. Because I don’t think that those letters – they don’t describe the child. They just label them. (Kristy).

Participants feared the social exclusion of their children as they often exhibited anti-social behaviour. Negative behaviours ranged from the child being ‘a loner’ to being intrusive, and in some instances aggressive. These mothers reported that their child’s aggressive episodes had a negative impact on social relationships with their peers. Fiona described the escalation of behavioural problems that resulted in her son’s social exclusion: My biggest thing was that adults would start looking and say well, please don’t let this child come. To a certain point, it did happen. He went to very few birthday parties as a child. He missed out on a lot on that social level.

Peta was also concerned by her child’s social exclusion. She made an effort to socialize her child, but found it frustrating and difficult to maintain her motivation: Why am I doing this? Like I’m trying to socialize him when he doesn’t want to. I’m exhausted, what’s the point? I mean I know I’ve got to keep doing it, it’s just so hard.

Exclusion and isolation were not confined to friends and acquaintances. Mothers and their children with ADHD often became alienated from their immediate and extended families: It is difficult – like you don’t want to leave him where he is not welcome either. It is like well, is he welcome there and do I want to leave him there? So then you kind of feel well I don’t want to do that so I won’t leave him there and then you end up quite separated from them [family]. (Theresa)


mothers, many of whom had consulted numerous doctors and other healthcare professionals: It is very frustrating. People – I mean you go to like the neurologist that he sees has certain ideas about it [ADHD] and the psychologist that assessed him at the hospital has certain notions about it. Then the paediatrician that we have been seeing has other ideas about it. (Theresa)

There came a time, however, when the visits to doctors ceased and mothers felt that there was little more to gain from putting their children through continued testing and consulting: I considered taking him to see this other paediatrician. I thought he’s a specialist in the field, there might be more that we can gain by going to see him, but I’d already dragged him [son] around to a number of specialists and I didn’t want to keep dragging him around to more and more people. I wasn’t sure if there was any more to be gained. (Cecilia)

Schooling their children with ADHD demanded a whole new set of advocacy issues. Mothers disclosed having to work closely with teachers and to advocate strongly to ensure that their children’s special needs were considered. Mothers often felt that schoolteachers had idealistic expectations of their children regarding both knowledge and behaviour: They’re having a thing now at the school where each term, if your behaviour is really good and you wear school uniform each day and do your homework, you go up to the levels, bronze and silver and gold. He still can’t get to bronze level because you need to be really good every day. He can’t get there because he has the occasional day where he will talk out of turn in class. It’s not fair on the ADHD children if that’s the standard of behaviour that they’re expecting from them, that they can’t even have one off day the whole term. So I feel like it’s geared against him. He doesn’t stand a chance of getting there. I don’t think that it’s very fair. (Kristy).

He doesn’t stand a chance: Mother as advocate Participants found it necessary to act as advocates for their children, particularly in relation to medical treatment and schooling, and experienced difficulty in gaining definitive diagnoses and appropriate treatment for their children: Sometimes I sort of think, well, maybe it’s only because I went to the doctor saying, does she have ADHD that they said yes. I think well, if I went to another doctor who specialized in something else in children, like Asperger’s, then – well, in fact, I did see a psychologist who thought overall she sounded more Asperger’s, you know. (Susan).

The feeling that the diagnosis their child received was (at least) partially associated with healthcare professionals ‘favouring’ certain diagnoses was widespread among the

This type of situation was seen to be deleterious to children’s self-esteem: He [son] was starting to have a lot of self esteem issues because he was constantly in trouble. He has a lot more detentions than the other children. (Peta)

As a result of the requirements of mainstream education, and their perception that their children would not cope, participants often contemplated alternative styles of education for their children. As their children grew older, these concerns continued: High school worries me in the fact that it’s going to be so big and busy and too much for him. Sometimes I think I don’t know how he’s going to deal with going to different classes. (Simone)


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Those women who had the financial means considered the private school system for their children, in the hope that they would receive a better-resourced and quality education than was available through the public system: I sent him to the private school because they’ve got a special needs teacher there, on board 5 days a week. If there’s any problems, they’re there. The aide’s on every day. Not like with the public school, you get 2 hours every week. (Tina)

However, some participants thought that their child’s behavioural difficulties were not dealt with well in private schools either, despite paying more for their education: Most of his teachers thought he was a bright, lazy boy and needed a kick up the backside, and they told me that. I started getting angry with the school because he was going to a private school that I was paying a lot of money for because I thought it would be good for him. I got angry with the school because I thought, I’m not a rich mother, I’m a single parent who’s putting everything into her son. I felt that the school was only interested in the boys who were clever in some way, whether they were academically high achievers or great sports stars, and they weren’t interested in middle of the road kids with poor, single mothers. (Cecilia)

Discussion Participants in this study were self-selected, middle-class and belonged to the dominant culture. Therefore, the perspectives of people from cultural minority groups or people affected by socio-economic disadvantage were not captured in this study. The sample size, although small, is in keeping with norms for qualitative studies, and was adequate to meet the aims of the study (Polit & Beck 2008). As with other qualitative studies, the findings are not able to be generalized, but their transferability is supported and confirmed in the extant literature. Our findings resonate with those by Harborne et al. (2004) in the United Kingdom (UK), who also identified emotional distress, blame and battles with both professionals and family members as integral to experiences of parenting a child with ADHD. This suggests that there are similarities in the parenting experience for Australian and UK parents of children with ADHD. Similar to findings by Harborne et al. (2004), in this current study the overwhelming nature of caring for their children with ADHD often had adverse effects on mothers’ mental and emotional well-being. Such issues have been identified in previous studies showing that mothers of children with ADHD experience considerably greater stress (Baker & McCal 1995) and rates of depression (West et al. 1999) than mothers of children without this

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disorder. Furthermore, women who have children with ADHD find it necessary to use a greater variety of resources and coping mechanisms than mothers of children without ADHD (Bailey et al. 1999). Throughout the women’s transcripts mother-blaming was apparent. The culture of mother-blaming has been partially attributed to the proactive role of women (as opposed to the passive role many men play), in providing care, and in particular seeking healthcare for their children, which subjects them to greater scrutiny (Jackson & Mannix 2004). Chell (2006) gives credence to this scrutiny by healthcare professionals, as parents often interpret thorough assessment processes ‘as an interrogation, a method of apportioning blame and responsibility’ (p. 1356). Women who participated in our study were not only held responsible by others, they also blamed themselves for their child’s behavioural disorders. This self-blame is also evident in literature exploring developmental regression in autism (Davidovitch et al. 2000). Similarly, Kuhn and Carter (2006) highlight that mothers in their study identified that their feelings of guilt had a negative impact on the effectiveness of their parenting. Mothers’ self-blaming for their child’s illness or disorder is not uncommon (e.g. see Swallow & Jacoby 2001, Wrubel et al. 2005, Kuhn & Carter 2006), and indeed the literature suggests that attribution of blame to mothers, with or without substantiation, is widespread (Jackson & Mannix 2004). So too, mothers of children with ADHD who participated in this study were deemed culpable by family and friends. Interestingly, those who might have been expected to give the most support for these women, for example their own mothers, were often judgemental and made uninformed comments about the children’s behaviour. This resonates with findings by Ferna´ndez and Arcia (2004), who explored maternal responsibility and disruptive behaviours in children, and alluded to mothers being the origin of behavioural disorders. Ideologies such as this persist despite evidence to suggest that paternal presence and interaction can have a substantial positive impact on a child’s behaviour (Keown & Woodward 2002). The women in our study experienced varying degrees of stigma and social rejection, and the findings shed greater light on how these are experienced in their daily lives. The literature suggests that maternal stress is further complicated by stigma (Green 2003). A study of stigma among parents of children with high-functioning autism points out that attendance at a mainstream school (implying a higher level of social involvement) increased the risk of social rejection for children as well as parents (Gray 2002). Furthermore, the



What is already known about this topic • Attention deficit hyperactivity disorder is a common childhood disorder. • Parenting a child with attention deficit hyperactivity disorder can have an impact on family functioning, emotions and can create greater demands on parenting. • The majority of the existing literature focuses on parenting styles, child treatment, child behaviour and child management and rather than exploring mothers’ experiences and perceptions of parenting a child with this disorder.

What this paper adds • Additional maternal stress is caused by the demands of the advocacy role as mothers are placed in the role as advocate for their child. • Mothers and their children with attention deficit hyperactivity disorder are subject to continual scrutiny, stigmatization and experience social exclusion. • Mothers experience conflict and confusion related to treatment options for their children.

Implications for practice and/or policy • More education for healthcare professionals is needed to enable them to give guidance to parents about the best available treatment for this disorder so that outcomes for their children may be enhanced. • Raising the awareness of nurses and healthcare professionals about mothers’ experiences of parenting a child with attention deficit hyperactivity disorder has the potential to guide practice and provide appropriate support for these mothers, thus minimising the possible negative impact on their mental health. more aggression displayed by the child, the greater the stigma for all concerned, with mothers experiencing greater stigma than fathers. This is because they are the primary carers, and therefore exposed to more social interactions with their children (Gray 2002). Norvilitis et al. (2002) propose that mothers of children with ADHD carry a courtesy stigma, that is they are stigmatized because of being associated with a stigmatized person (Goffman 1963). However, the use of the term ‘courtesy stigma’ is questionable in this case, as mothers are not stigmatized purely as a result of their association with a child diagnosed with ADHD, but because they are seen as the


‘cause’ of the disorder. This is evident in Norvilitis et al.’s (2002) findings, where mothers of non-ADHD children said that children with ADHD required greater discipline (in response to their behavioural problems), thus indicating a stigma rather than a courtesy stigma.

Conclusion The challenging behavioural problems associated with ADHD were experienced as demanding and anxiety-provoking by the mothers in this study. There is an overwhelming need for support, and it may be that mothers could benefit from their children having access to long-term therapeutic case management by nurses with expertise in mental health and behavioural problems in young people. The immense demands of caring, coupled with the lack of respite, mean that mothers of children with ADHD are liable to experience stress and anxiety. Nurses are ideally placed to support these mothers and to advocate for respite and childminding services. Advocacy is also needed in relation to schooling issues, and nurses have a role to play in advocacy for appropriate school-based services for children with ADHD. Furthermore, mothers experience social isolation and fear of social rejection and so could benefit from participation in interventions such as support groups and other opportunities to meet with mothers of other children with ADHD. In addition, mothers may also find participation in stress reduction activities beneficial. More education for healthcare professionals in particular is needed to enable appropriate guidance for parents about the best available treatment for this disorder so that outcomes for children with ADHD may be enhanced. Furthermore, raising the awareness of nurses and healthcare professionals about mothers’ experiences of parenting a child with ADHD has the potential to guide practice and provide appropriate support for these mothers, thus minimizing the possible negative impact on their mental health.

Funding This project received support from a University of Western Sydney Research Grant.

Author contributions KP & DJ were responsible for the study conception and design. KP & DJ performed the data collection. KP & DJ performed the data analysis. KP & DJ were responsible for the drafting of the manuscript. KP & DJ made critical revisions to the paper for important intellectual content.


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