Parenting in a crisis: conceptualising mothers of children with cancer

Social Science & Medicine 55 (2002) 1835–1847

Parenting in a crisis: conceptualising mothers of children with cancer Bridget Younga,*, Mary Dixon-Woodsa, Michelle Findlayb, David Heneyc a

Department of Epidemiology and Public Health, University of Leicester, Mary Dixon-Woods, 22-28 Princess Road West, Leicester LE1 6TP, UK b Department of Cardiology, Glenfield Hospital, Groby Road, Leicester, LE3 9QP, UK c Children’s Hospital, Leicester Royal Infirmary, Leicester LE1 5WW, UK

Abstract Much research on the experiences of parents of children with cancer has been conducted within a discourse of psycho-pathology, or has tended to see parents mostly as a proxy source of information on the well-being of their children. Using empirical data from semi-structured interviews with 20 mothers of a child with cancer, in one area of the UK, we draw on sociological literatures on motherhood, childhood, caring, and chronic illness to suggest a more helpful and informative way of understanding their experiences. We suggest that mothers, although not ill themselves, experience many of the consequences of chronic illness. Biographical disruption begins for them when they first notice something wrong with their child, and intensifies with diagnosis, altering their sense of self and their social identity. The diagnosis brings with it a set of new responsibilities and role expectations, including an obligation of ‘proximity’Fbeing physically close to their child at all times to provide ‘comfort’ and ‘keep-watch’. For mothers, caring evokes an intense emotional interdependence with their sick child, and involves a range of technical tasks and emotional work, including acting as ‘brokers’ of information for their child and managing their cooperation with treatment. Managing these obligations was achieved at high cost to the mothers themselves, and resulted in severe role strain by compromising their ability to function in other roles, including their role as the mother of their other children. Against the backdrop of a severe and life-threatening illness, everyday concerns about their child’s diet or appropriate discipline take on a new significance and carry a heightened potential for generating conflict and distress for mothers. In presenting their accounts, mothers draw on prevailing cultural discourses about motherhood, childhood and cancer, and these clearly influence the context in which they care for their child, and shape their reflexive constructions of their experiences. Caring for a child with cancer had many adverse implications for the quality of life of the women we studied. Mothers of a child with cancer warrant study in their own right, and such study benefits from interpretive perspectives. r 2002 Elsevier Science Ltd. All rights reserved. Keywords: Cancer; Children; Mothers; UK

Introduction This paper focuses on how mothers’ experiences of caring for a child with a chronic illness should be appropriately understood and characterised. Using original empirical research on childhood cancer, this *Corresponding author. Tel.: +44-116-252-3214; fax: +44116-252-3272. E-mail address: [email protected] (B. Young).

paper explores social constructions of motherhood, childhood and childhood illness, and the complex roles undertaken by mothers who care for ill children. It will, in so doing, seek to challenge the under-conceptualised models of parenting children with illnesses such as cancer that have dominated this area. Childhood cancer was chosen as the focus for this study because it represents a significant crisis for families; at a time of major transition, it serves to define and redefine the roles of mothers as parents and as

0277-9536/02/$ - see front matter r 2002 Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 7 - 9 5 3 6 ( 0 1 ) 0 0 3 1 8 - 5

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carers. Several factors combine to underline the critical nature of the illness: though survival has dramatically improved over the last 3 decades (Stiller, 1994) it still poses a significant threat to life, its onset is often acute, and its treatment is intensive and demanding. It is also a chronic condition: treatment may extent for several years, and it is associated with a range of adverse longterm effects, including disability and infertility (Lackner et al., 2000), so it carries the potential to disrupt permanently parents’ and children’s biographies. Much of the existing literature on children with cancer and their families is dominated by psycho-oncologyFan approach that has emphasised the psychological difficulties experienced by children (Varni, Katz, Colegrove, & Dolgin, 1994) and their mothers and fathers (Kazak et al., 1998), but has failed to engage with the burgeoning interpretive literature attempting to theorise and contextualise the experience of illness from the perspective of patients and their families (Anderson & Bury, 1988). Within psycho-oncology, research has tended to include mothers merely as proxies to report for their children (Eiser & Morse, 2001). Research that has focused on mothers themselves has mostly been conducted within a discourse of psychological pathology, informed by a body of studies focusing on the measurement of maladjustment and coping in parents (Grootenhuis & Last, 1997), and its implications for children’s later adjustment (Sawyer, Streiner, Antoniou, Toogood, & Rice, 1998). Some qualitative work has attempted to document parents’ experiences of having a child with cancer (Martinson & Cohen, 1988; Yeh, Lee, Chen, & Wenjun, 2000) and its aftermath (Van DongenMelman, Van Zuuren, & Verhulst, 1998), but little attention has been given to understanding the social processes surrounding mothers who care for sick children, including the obligations upon which their roles are founded, and how their reflexive constructions of their parenting role mediate their experiences. This paper aims to investigate the experiences of mothers living with a child with cancer. By drawing on writings from the sociology of care-giving, motherhood and childhood, which hitherto have not featured in considerations of their experiences, we aim to contribute to the literature on the experience of being a parent of a sick child and consider how mothers should best be conceptualised in the social science literature on childhood health and illness.

Methods Study design and participants As part of a wider study of mothers’ and children’s experiences and beliefs about childhood cancer, semistructured interviews were carried out with 20 mothers

of children who had a confirmed diagnosis of leukaemia, malignant solid tumour or brain tumour and were aged between 4 and 17 years. Eligible mothers whose children were attending one paediatric oncology unit in the English Midlands during the recruitment period were invited to participate. Twenty of the 21 eligible mothers agreed to participate and their informed consent was obtained. To avoid burdening families when children were in a critical condition, mothers were approached only when a consultant had indicated that their child was sufficiently stable. Research ethics committee approval was obtained for the project. MF, who was not involved in the care of any of the children, did all the interviews. Sixteen were conducted in parents’ homes and four in hospital. Three fathers were present for some or all or the interviews, though the mother was the main participant in all interviews. Interviews followed a narrative form with mothers being asked to ‘tell their story’ of their child’s illness, in an attempt to give precedence to the ways in which mothers themselves constructed and interpreted their experiences, and defined their roles. An interview prompt list, initially based on a review of the literature and discussions within the project team, was used to guide the first 2–3 interviews. This was refined as new areas of interest emerged from these and subsequent interviews, and covered topics such as events leading up to diagnosis, beliefs about the illness, beliefs about and experience of treatment, and mothers’ perceptions of their role. All interviews were audio-taped and transcribed verbatim.

Analysis Data analysis was based on the constant comparison method (Glaser & Strauss, 1967). Analysis began after the first 2–3 interviews and sampling continued until theoretical saturation was achieved. Transcripts were read 3–4 times and open codes were generated to initially break down, examine, compare and begin to categorise the data. This continued until broader patterns were identified, and these were eventually organised into an initial thematic framework for subsequent analysis. Assisted by QSR NUD.IST software (version 4) (Gahan & Hannibal, 1998), data were coded into organising themes and sub-themes in an iterative process in which the initial thematic framework was constantly refined and data compared for similarities and differences in the accounts of the respondents. In this way themes were refocused or altered to achieve a good fit with the data and to represent its properties as fully as possible, whilst also incorporating negative cases (Murphy, Dingwall, Greatbatch, Parker, & Watson, 1998).

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Findings The sample of mothers recruited to the study was socially and ethnically diverse. Twelve mothers were not in paid employment and the others were mainly clerical or manual workers; the children’s fathers were in a socially mixed range of occupations. Six mothers were single, divorced or separated, and four of the families were of South-Asian origin and the remainder white. Children had been diagnosed between 1 and 36 months before the interview and were either receiving treatment or had completed treatment within the previous 4 months. Nine children were diagnosed with leukaemia, nine with solid tumours and two with brain tumours. Theoretical saturation was reached by the 14th transcript, and later transcripts provided data to confirm and consolidate the thematic framework. The following sections are organised around the principal themes generated by the data, and include illustrative quotations from the transcripts of the interviews. For each quotation we include an identification number for each mother, and give the gender and age in years of their child in brackets. Biographical shift Mothers’ accounts of the period leading up to diagnosis of their child’s cancer performed several strategic narrative functions, as we have reported elsewhere (Dixon-Woods, Findlay, Young, Cox, & Heney, 2001). The narratives served, among other things, to demonstrate the significance of the striking biographical disruption (Bury, 1982) associated with the diagnosis, signalling the transition from mothers of a ‘healthy’ child to mothers of a child in crisis. The consequences of the biographical shift to mother of a child with cancer were far-reaching. Being a mother of a child in crisis required a fundamental redefining of mothers’ self-identities and the work of motherhood. Mothers contrasted the certainty and control of their pre-illness lives with their post-diagnosis lives: their narratives emphasised how the diagnosis activated a process of constructing a new self-identity which brought with it new responsibilities and roles. The new self-identity was reflexively constructed, grounded in the experiential realities of childhood cancer, drawing on culturally prescribed expectations of carers and mothers, and modified through a ‘‘cycle of re-appraisals and revisions in the light of new information and knowledge’’ (Williams & Calnan, 1996, p. 1617). While mothers’ self-identities were continuously iterated and redefined as the illness progressed, our analysis suggests that there are characteristic features of the self-identity and experiences of the mother of a child with cancer. We will suggest that, although they are not themselves ill, mothers experience many of the consequences of chronic

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illness, including biographical disruption, compromise in role function and deterioration in quality of life. Additionally, mothers take on emotional and caring responsibilities that are socially and culturally mediated, and analysis of their care-giving role benefits from the substantial sociological literature on care-giving, motherhood and childhood. Proximity and confinement A key obligation generated by the diagnosis of childhood cancer was the felt need for almost all the mothers in our study to be physically close to the sick child, which we will call the obligation of ‘proximity’. The period immediately following the diagnosis was experienced by most mothers in the study as catastrophic, demanding a reorganisation of everyday life around the ill child. Just the bottom drops out of your world. It’s dreadful, it really is, you can’t describe the shock. It’s not like when someone dies, and I know that’s stressful, but when it’s your child and you know you want to protect your child. Mother 11 (female, aged 5). You remember it being this horrific time where everything you know is tipped upside down but I just wanted to get him right you know. Mother 16 (male, aged 9). As we have described elsewhere, some mothers had experienced a dispute with doctors over the significance of their child’s symptoms and had struggled to ensure their child be investigated in the pre-diagnosis period (Dixon-Woods et al., 2001). While these mothers tended to voice a sense of relief that at least they now knew what was wrong, the period of their child’s diagnosis was still experienced as a time of major upheaval. Many mothers lived full-time on the ward with their child in the weeks or months following the diagnosis, returning home only for brief periods, often for only a couple of hours at a time. During subsequent acute phases of the illness and treatment, periods in hospital might last several weeks, with shorter stays or day admissions for later phases of treatment, but still usually involved mothers being with their children most of the time, whether at home or in hospital. With few exceptions, most of the day-to-day caring work was done by mothers, though some fathers or other relatives would provide occasional respite support. For some mothers ‘keeping watch’ and closely monitoring their child’s well-being and treatment were important functions during this period, but ‘‘comforting’’ was their primary responsibility. Confirming James’ (1988) suggestion that childhood illness intensifies children’s dependency and vulnerability, mothers pointed to how

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the trauma of the illness and treatment had greatly augmented their child’s needs for ‘comfort’. In their accounts of why it was they who took on this role, mothers emphasised the special character of the mother– child relationship in achieving ‘comfort’. I stayed [in hospital] day in and day out because, if her father or anyone from my in-laws’ side came to help her she just didn’t want anyone to come close to her because she was having so many needles and injections and she had a little cannula whichywould get blocked and she would have to have another one. And she was screaming and she had bruises all over her hands and legs. And because of her weakness they could never get enough blood or put the needle in the right veinsyand she was really in pain. It was a really hard timeyshe didn’t want anyone next to her, no one, no doctors, no nurses. And she’s holding my hand day and night to say don’t go away, don’t leave me alone, and I couldn’t leave her like that so I was there with her until they allowed me to come home with her. And I was there for more than 2 months. Mother 13 (female, aged 4). Mothers of adolescents spoke of their own need to be there or keep watch over their child, even if their presence was not always desired; their own felt obligations over-rode attempts by their children to limit their roles. I can’t leave her on her own, I can’t. She tells me sometimes ‘‘Why don’t you just go home?’’ And I can’t. I just think, I couldn’t leave a child in hospital, it just wouldn’t, I couldn’t sleep at home. Mother 6 (female, aged 17). The period of confinement imposed by the obligation of ‘proximity’ could sometimes be a source of comfort to mothers themselves, affirming that they were functioning effectively in their care-giving role. Mothers drew a clear distinction between the hospital world and home world, speaking of how moving between the two could underline the seriousness of their child’s illness, and how being in hospital at least created a space for them to come to terms with the illness (one in which less exacting norms of health could be applied). Confinement also engendered a sense of shared experience with other mothers, and served narratively as a demonstration of adequate parenting (Baruch, 1981). It is important to note, however, that ‘proximity’ clearly came at a high price for the women’s prediagnosis self-identity, their own needs and other role functions. Several mothers spoke of inhabiting a ‘‘different’’ or ‘‘alien’’ world during periods in hospital, as well as referring to feelings of confinement or containment. A few pointed to feelings of isolation or restriction, but a striking feature of mothers’ accounts of

this period was the oblique or circumspect nature of references to their own needs. For example, mothers usually slept in camp beds at their children’s bedside in open wards, and although some described the cramped conditions, lack of privacy and the difficulties they experienced in sleeping, it was unseemly to be overly critical. Sleeping on the ward is no big deal if it’s your child. In my opinion they are your foremost priority. I would have stood up all night. Mother 16 (male, aged 9). Clearly, in a world in which the role of mothers is constructed as being one of obligation and selflessness, it was difficult for them to give voice to their own needs. Some mothers did refer to experiencing a sense of longing for some ‘‘space’’ for themselves, and some spoke of actual breaks from caring or keeping watch. However, when such breaks were described, they were carefully managed so as to appear ‘legitimate’: most of these accounts contained references to the role of health professionals in helping to legitimise these absences. Well I’ve majority stayed with her when she was in, and I did come home for a couple of nights because she was giving me a massive depression and I couldn’t handle her mood swingsyI had a word with doctor and he said to give you a rest I think you ought to go home, even for a couple of hours. Mother 19 (female, aged 13). ‘Proximity’ had significant costs for other aspects of mothers’ role functioning. In particular, they experienced huge compromises in their ability to function in their roles as mothers of their other children, spouses, housekeepers, and in their employment. They were unable to perform basic caring tasks for their other children, including taking them to school, preparing food, helping with homework and so on. Good quality, reliable support with the care of other children therefore became of crucial importance to them. Several fathers took on this responsibility, but this was not always possible in single parent families or when fathers refused or were unable to take on these duties, sometimes because they too wanted to spend time with their sick child. Because my husband didn’t help I had to stay there all the while with [my daughter] and I was there constantly. I couldn’t get back to see [the baby] and they didn’t bring her in to meybasically the first six weeks I was in there with [my daughter] I’d forgotten I’d got [a baby]. That’s dreadful but I just completely forgot about [her] because she was only a little baby. But it was just [my daughter] and me. Mother 11 (female, aged 5).

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In some cases lack of childcare resulted in the entire family spending prolonged periods on the ward, which could be disruptive for the families concerned and for other patients, relatives and staff. More usually other relatives and friends took on the care of the other children, though this could bring a range of organisational difficulties and be a source of conflict. Some mothers also worried about exhausting or overburdening these sources of support. And my two other sons wereyjust chucked about from pillar to postyI was at the hospital every night, people were going up in the day so I was going up in the evening when it was harder for people, so my kids were just [with] whoever would have them. Mother 1 (male, aged 17). Mothers who had other children who were teenagers were also concerned about the impact that their absence from their children’s lives might have, and though the obligation to be with their sick child partly ameliorated this aspect of role strain, many still experienced guilt, conflict and regret at being away from their other children. The need to negotiate expectations about obligations that are ambiguous or conflicting has previously been noted in studies of employed women with small children (Brannen & Moss, 1991). A few mothers commented that quality of their relationship with their partner had declined since their child had been diagnosed. While elevated levels of marital distress have been observed in some quantitative studies (Dahlquist et al., 1993), this aspect of role strain was mentioned infrequently by the women in our study, and relative to the concern they expressed about their children it seemed to be given little priority. Several mothers who had been in employment or education before their child’s illness had to relinquish these commitments when their child was diagnosed. Mothers experienced ‘‘grief’’ for their former lives in which former aspirations could be fulfilled, in the same way as patients with chronic illness grieve for their former selves (Kelly, 1986). But it chokes me up now because there’s so much strain it does put on your family because you want to be with everybody and you can’tyJust before my daughter fell ill I’d got a job at her school as a dinner lady and I was wanting that job for ages and I’d only been there a month and I had to give it up. Mother 10 (female, aged 12).

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adolescents in particular, managing their child’s cooperation with treatment, including taking medicines, physical examinations, unpleasant treatment procedures and mouth care, was a source of considerable concern and distress. The only way I could get her to do it, and sometimes now I wish I didn’t say it to her, but the only way I could actually get heryand I sat down with her one day and I said ‘‘You do know that unless you let the doctors give you your treatment to you you’ll die’’yI wouldn’t recommend anybody to do that but it workedyI mean a child psychiatrist would probably say that was completely the wrong thing to doybut I was just desperate and nobody else could give me any advice because I’d tried everything. Mother 11 (female, aged 5). But there were days when she wouldn’t take [her medicines] and you’re thinking oh God she’s got to have them. And you’re panicking and you’re getting at her and she’s getting upset. I think that was the most strenuous thing out of everything. Mother 10 (female, aged 12). Mothers expressed an overwhelming sense of responsibility for ensuring their child’s co-operation, and frequently exhausted a range of strategies to do this, including insistence and force when co-operation could not otherwise be gained. The significance of managing children’s co-operation went beyond the everyday role of mothers as their children’s ‘‘accountable agents’’ (Voysey, 1975, p. 43) a role that they perform by exerting varying degrees of control over children (Ribbens, 1994). It destabilised their usual manner of parenting and frequently turned into a no-win situation: refused treatments might compromise their child’s recovery, while the use of force might damage their relationship with their child, undermine their child’s trust or risk ‘traumatising’ their child. Services could play an important role in supporting mothers in managing their child’s co-operation. In particular, staff who were skilled at establishing successful relationships with children could mean that children were less likely to resist treatments, and complain about or become upset by visits to the hospital. Only a few mothers spoke of intervening to attempt to control how or when treatments were carried out, and when they did so it was mostly in a very limited or restricted way.

Ensuring children’s co-operation with treatment The role of care-giving was a complex one for mothers, involving a range of nursing, technical and emotional tasks for their children alongside their routine childcare. For mothers of young children and young

I was really very upset about it because I wanted to do the best for her and yet I couldn’t because I just didn’t have the assertiveness to say look my daughter wants this now, could she have it? I couldn’t do that. Mother 3 (female, aged 11).

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It has been suggested that this apparent reluctance of mothers to act as advocates for their children may indicate the faltering of some aspects of their authority as parents in the early stages of their child’s illness (Patistea, Makrodimitri, & Panteli, 2000). However, we would suggest that this issue should be seen in the context of severe and life-threatening illness where treatment is viewed as life-saving, and where the medical agenda becomes particularly potent. In his study of patients undergoing coronary bypass surgery, Radley (1996) suggests ‘‘concerns of life and death’’ create a ‘‘special relationship with medicine’’ for patients. The healing powers of medicine lie in bringing about an ordering of, a meaning within experiences that, at their best, are inchocate, and, at their worst, revolve about a hollow of angst. This ordering takes place because the patient believes in the surgeon’s and the nurses’ commitment to care in general, and to his or her well-being specifically. (Radley, 1996, p. 134) Viewed from this position we suggest that the mothers who shied from the role of advocacy for their children were not abdicating their authority as parents; instead, we concur with Radley that mothers’ investment in their children’s survival means that they accommodate to the demands of the treatment in a reflexive process that (no doubt) weighs its pros and cons, but perhaps more importantly involves an [re]ordering of meaning that transforms the very basis of their judgements. It is not simply that all other concerns are subordinate to their child’s survival: in accommodating to their children’s treatment, mothers are engaging in something that needs to be understood in the language of belief, trust and faith, and it is these concepts that underpin their relationship with medicine and its practitioners. Maintaining children’s physical well-being Perhaps because it was one of the few areas where mothers felt they could reasonably exert some direct influence or control in protecting their children, concerns about the adequacy of their child’s diet and about avoiding infections were prominent in their accounts. For example, they spoke of their worries about infections and of the measures they took to avoid their child being exposed to infections. But that’s the thing I worry aboutyher catching things from other childrenyI couldn’t let her go to parties in case one of them has chicken pox or measles or something. I suppose that could be a problem when she has to go back to schoolyif [another] child gets chicken pox or something then [she] won’t be able to go to school either. Mother 17 (female, aged 6).

Mothers’ beliefs about the role of nutrition in recovery from disease, which is akin to what Helman (1994, p. 44) has termed ‘‘food as medicine’’, added to their drive to ensure the nutritional adequacy of their child’s diet. Treatment for cancer was widely believed to have a continuing impact on children’s food preferences, and these might change from week to week, creating an additional set of difficulties for mothers. Regarded as unpalatable and of poor nutritional quality, hospital food was seen by mothers as thwarting them in ensuring their child had an adequate diet, particularly when children’s appetites were depressed or their food preferences changed by treatment. They were particularly critical of the sort of food available for children, described as consisting largely of ‘‘beefburgers, tinned pasta, chips and beans’’, which they contrasted with their children’s preferred foods: vegetables and salads. Mothers emphasised the quality of food that they provided at home, again asserting their claim to adequate parenthood, and compared this with the poorness of food at the hospital. The way in which food was prepared and kept warm was of concern, as was the lack of choice and poor availability of nonWestern foods for families from ethnic minorities. Several strategies were adopted to overcome these problems: hospital meals could be supplemented with cereals, sandwiches and yoghurts, which were generally available, and by visits to the hospital canteen. Some mothers only managed to resolve these difficulties with food by returning home for a few hours every day to prepare meals to bring into the hospital, by asking visitors to bring food from home or by purchasing food from nearby shops and cafes. So it can be stressful because I have to cook the dinner sometimes and being vegetarian your diet is different anywayyeating Western food all the time, the only thing we can eat [in the canteen] is chips. You get so tired of it all the time, there’s not a lot of vegetarian food, so we would take food into her. So it’s basically running around to make sure you come home and cook the dinner and going back in, and while I’m cooking the dinner she’s by herself so it’s very pressured. Mother 3 (female, aged 11). When at home, several mothers purchased special food in the hope of tempting their child to eat a little something, though this strategy proved very expensive for some families. Ensuring their child’s nutrition also had the potential to generate tension and conflict. She just don’t want to eat. Very, very hardly. You sitting down with her morning to evening and a couple of bites, that’s all. She don’t like. Anything you give herFdon’t likeFno matter whateveryAnd it makes you angry, she’s having all this medicine and she needs some food. And I can’t cope

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with her just to go hungry and I lose [my] temper. Mother 13 (female, aged 4). Though mothers living with their children on the ward had themselves little access to good quality food, they rarely complained, again suggesting the extent to which their own needs had become subsumed by those of their child. Emotional work: managing emotions Mothers took on a dual role in relation to emotional work (Hochschild, 1983), managing their own and their child’s emotions, a feature of emotional work that has been noted in research in other contexts (Exley & Letherby, 2001). However, a particularly strong theme running through the accounts of the mothers in our study was their emotional interdependence with their children, and a suggestion that they ought to share in or help to carry the burden of their children’s experiences. These ideas were expressed in a variety of ways including speaking of the difficulty of watching their child’s distress, using the term ‘‘we’’ when speaking of their child’s experiences, and by wishing that they could somehow swap places with their child. That’s when it’s tough when she’s poorly, but when she’s fine then I can cope with it really well myself. Mother 20 (female, aged 4). An important aspect of emotional work involved keeping children entertained or occupied, a task that was viewed as important in preventing psychological distress in children. Most mothers believed that their children should be shielded from adults’ emotions, indicating the type of emotional ‘‘labour’’ to which James (1989) refers in her writings on the care of dying patients, but this was particularly difficult to manage in the days after diagnosis when mothers themselves felt vulnerable and diagnosis had often not yet been revealed to children. Concern about the appropriate expression of parental emotions remained prominent throughout the course of the illness, and again this could be complicated by the felt need to filter or censor the information given to children in mothers’ roles as ‘information brokers’. Expressing emotions when children were not around was seen as one way of dealing with these difficulties, being open with children about their illness was another, but ultimately mothers still felt compelled to maintain a ‘‘cheerful’’ disposition in the presence of their children. She asks so many questions, in depth questions so she does know, she is aware, and she’s asked about percentages and all sorts of thingsyshe knows I’m worried but in front of her I try and stay cheerfulyBut she’s so cheerful in herself that in a

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wayyyou’ve got to be cheerful with her. You can’t come on the ward and wring your hands and say ‘‘why’’? sort of thing. Mother 7 (female, aged 14). You don’t know what [the future] holds for her, every time we try and portray a positive picture for her, so it’s hard. It’s hard. Mother 3 (female, aged 11). Helping children to ‘‘pass as normal’’ (Goffman, 1968) was another aspect of mothers’ emotional work, though finding the right balance was difficult, and this could be a challenge for mothers to reconcile with their own emotional needs. I mean I just sit there when she’s throwing up in the room reading my book and I take in what I’m reading, I don’t watch her, so to the extent that she actually pressed the bell for the nurse to come to take the tray awayyAlthough she doesn’t want me watching her, she was also annoyed that I was perhaps ignoring her. Mother 6 (female, aged 17). I found it very difficult at first to leave him at the [school] gate because I didn’t want to part with him. It’s the fact that you’re thinking well if he doesn’t make it this is another day that I’ve missed with him. Mother 16 (male, aged 9). Mothers became what Charmaz (1991) has termed ‘‘alert assistants’’ in acting in subtle or invisible ways to protect their child’s identity, or to represent their status as ‘‘ordinary’’ (Prout, Hayes, & Gelder, 1999). However, helping their child to ‘‘pass’’ was made more difficult for mothers because the dominant culturally available identity of a child with cancer is one of heroism and stoicism. Some mothers’ accounts attempted to show how their children negotiated expectations of their selfidentity, and demonstrated the emotional work of mothers in protecting their sick child’s identity. She needs you not to be too nice to her, she needs you to treat her as normal as possible. Mother 6 (female, aged 17). Even when he had his 3rd block [of chemotherapy] he played football. He’ll come up for a lumbar puncture on a Tuesday and go to football training. It’s not that I’m pushing him. He sees it as normal for him, and he’s a little boy, a normal little boy, the same as his friends. Mother 16 (male, aged 9). The need to protect their child’s emotional well-being meant that mothers had to negotiate new forms of relationship with their child. As we suggested earlier, usual childrearing and discipline strategies were destabilised: applying normal rules risked mothers being judged as harsh or unfeeling, but making too many allowances for children’s illnesses risked being blamed for ‘spoiling’.

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I think you tend not to want to tell her off for something that she’s done because you don’t want to upset her. You don’t want her to be upset because she’s got enough to worry about at the moment with this. Mother 7 (female, aged 14). Mothers also faced new dilemmas, for example giftgiving by friends and relatives was difficult to manage, particularly as it could undermine their emotional work in helping their children to ‘‘pass’’, and risked magnifying siblings’ feelings of exclusion or neglect. Emotional work: communication with children Quality of communication, information provision and relationships with staff were seen by mothers as playing a crucial role in supporting them as they fulfilled their parental and caring obligations. Though mothers were deeply shocked and distressed at hearing the diagnosis of their child’s illness, and many described being unable to ‘‘take in’’ information, health professionals’ explanations of the illness and treatment, including written explanations, were nevertheless greatly valued at this time, and helped to acknowledge mothers’ responsibility for their children and their special involvement in ensuring their well-being. Dr H was good, she explained everything, she told us about which programmes and that which we could go on, which didn’t mean anything to me at that time, it was just like double dutch you know. You were still adjusting to knowing that your daughter’s got leukaemia and knowing that she’s got to have treatmentyAnd the way they explained everything to you, that was brilliant, they wrote everything outyWhereas if they just say right, they’ve got to have that, that and thatyyou think what the hell are they doing to her. So every step of the way you knew what was going on. Mother 10 (female, aged 12). All mothers found it very difficult to break news of the diagnosis to their children. Initially, a few requested that the diagnosis be withheld from their children, and some felt that using the word ‘‘cancer’’ was inappropriate, opting instead for terms such as ‘‘tumour’’ or ‘‘leukaemia’’. As Alderson (1993) found in her study of children’s consent to surgery, there was considerable variation between mothers in their accounts of what they told their children about their illness and its treatment. Beliefs about child development and children’s vulnerability implicitly and explicitly mediated how mothers communicated with their children, but their approach to information-giving was extremely complex and not simply related to their child’s age. For example, mothers of some of the younger children in our study spoke of adopting a very open and frank approach to communication, while mothers of some of the older

children were more guarded, perhaps at least in part due to the belief that older children and adolescents had a greater appreciation of the seriousness or significance of cancer. Recent experience of older relatives who had died from cancer could also have a major impact on how mothers managed communication with their children. We never told her it was cancer, we told her she had leukaemia you know. The leukaemia, to [her] that’s not a cancer whereas her grandmother died just over a year ago with cancer and that’s why I wouldn’t let nobody tell [her], you know that she had it. Mother 12 (female, aged 13). I decided right from the start that he should know as much as he wanted to know and be aware of how serious it was. Mother 15 (male, aged 6). Difficulties with information giving did not end when news of the diagnosis had been broken, and several mothers experienced ongoing problems in dealing with their children’s anxieties about their illness and acting as a ‘broker’ for their information needs. I don’t know what to say to her when she asks me. I have to think quick, and then I might be giving her the wrong answer. She knows some people die of cancer, some people live longer, some people need less treatment, some people need more treatmentyit’s just some people get more poorly than others. She won’t accept that, she thinks because she’s got cancer she’s not going to live to be an old lady and have a family of her own. Mother 19 (female, aged 13). Staff who could establish a good relationship with children, and who had highly developed skills in communicating with children, were seen as performing a pivotal role in facilitating children’s emotional wellbeing as well as their physical care and treatment. This confirms Mayall’s (1996) finding that for mothers, the care of their children’s bodies cannot be conducted separately from the care of their minds. And she don’t mind if she’s coming on the ward because she really likes the staff and she don’t mind staying on the ward. Mother 12 (female, aged 13). Although most mothers’ experiences of communication and information giving by health professionals were positive, a few worried that they might be creating a ‘‘nuisance’’ by asking too many questions, or were concerned about overburdening staff who were ‘‘very busy’’. Occasional lapses in communication were reported by some, which usually entailed treatments being administered or changed without parents’ knowledge. This was something that mothers found particularly upsetting, pointing to how it made them feel undermined or threatened. With the improving health of their

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children, mothers felt a concomitant increase in their responsibility for monitoring and maintaining their children’s health, a responsibility that could be frustrated or blocked by information provision that was perceived as inadequate. As their child reached the stage of ‘‘doing well’’ or was discharged from hospital some mothers became concerned that the needs of children were no longer being prioritised, and worried that they might somehow be forgotten or overlooked. I mean we were given quite a lot of information right at the beginning when [my son] was first diagnosedyand then I feel it kind of tapered offyI mean you ask questions and people are happy to answer those questions butyit’s not always a good time in clinic or when [my son] is having treatment to ask questions, obviously people are busyy. And once or twice [my son] has had a kind of reaction to somethingyand nobody had sort of said ‘‘Oh this might happen.’’ And when I got him over [to the hospital] it was very calmly explained to me that this is something that happens quite a lot. And I thought okay that’s fine, that’s stopped me from worrying but I’d just driven sort of 40 minutes from [home] with a very sick little boyyIf that had been explained to me I could have dealt with that here. Mother 15 (male, aged 6). Guardians of biography Mothers’ accounts suggested that the diagnosis of cancer threw into sharp relief the role of mothers as guardians of their child’s biography. One aspect of this guardianship, as we described earlier, was mothers’ work to protect their sick child’s identity. In their role as ‘biography guardians’, mothers were particularly concerned about their children’s futures: that their children would survive their cancer, and, moreover, that they would survive without significant physical, psychological, or developmental impairment. In seeking to protect their children’s futures, mothers had to negotiate prevailing cultural discourses about cancer and child development. One of the tasks that mothers undertook in the narrative construction and reconstruction of the biography of childhood cancer is a familiar one in patients with a chronic illness: a search for an explanation for their child’s disease. As in Comaroff and Maguire’s (1981) study, some mothers blamed environmental causes for their child’s cancer. However, some also wondered if they were themselves to blame for having failed to protect their child from hazards during pregnancy and childhood. I really want to know what caused it so that I can prevent it happening to [my other daughter] or

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prevent it recurring. I know they don’t know, but if they could just say you had your hair coloured when you were pregnant, or you used [a certain brand of washing-up liquid], or anything silly. Mother 11 (female, aged 5). In this way, the diagnosis threatened not only their child’s biography but also their own. A further threat to mothers’ own biographies, and to their self-identity as adequate parents, was the perception that they had failed as advocates and protectors for their children. For example, looking back on the pre-diagnosis period one mother wondered whether she had been sufficiently vigilant in detecting the early symptoms of her daughter’s illness. I still haven’t come to terms with the fact that [she] is so ill after being so healthy, it just happened so quickly. I think, and you try and think back to, perhaps you missed the warning signs. Mother 7 (female, aged 14). The search for the meanings of the illness for their child’s future biography must be understood within a temporal framework. Given the rarity of childhood cancer, mothers lacked a stable and well-informed set of lay beliefs or resources for managing their experiences, and in the early stages of the illness their beliefs about cancer were based mainly on their experiences or adults with the disease, which generally characterised cancer as likely to be fatal. Against this backdrop, assurances from health professionals that much could be done medically for children with cancer were not easily or quickly accepted by a few of the mothers. Cancer to me, everyone who’s has it has diedy. And I imagine there couldn’t be a cure. One of me aunts had it in her bones, and the other one had it in her stomach and they died, and to me I thought that’s what would happen to [my daughter]. Even when the specialist explained, it was still cancer to me. Mother 12 (female, aged 13). Later, as concerns about the mortality began to recede, mothers became deeply worried about the impact of the disease and its treatment on other aspects of their child’s well-being. I just sort of think, you know when they’re a baby and you think, is there something wrong with them and then they grow up perfect and it’s just a shame that she’s lost her hearing like this. Mother 9 (female, aged 14). Beliefs about child development mediated mothers’ worries, particularly about the impact of the disease on psychological health. A few regarded children as naturally resilient and hardy, and suggested that certain features of childhood immaturity might help in their

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successful adjustment. More commonly among mothers in our sample, however, childhood was seen as a time of increased vulnerability, a time when children and young people were more susceptible to difficulties because of their immaturity, emotional dependence and limited ability to understand their illness and its treatment. Beliefs about children’s capacity for adaptation, and particularly their psychological plasticity, added a further dimension to mothers’ concerns. Significant for some was the fear that their child’s experiences during the illness would have a long lasting impact and permanently alter the course of their development. Mothers thus appeared to have absorbed concepts from psychological discourses on child development. We were really scared to say whether she’d go back to being normal or not because she couldn’t walk, she couldn’t eat, she couldn’t drink. Mother 13 (female, aged 4). To put a 5 year old through that is hell and back. I mean for an adult they know they’re trying to help youybut a 5 year old doesn’t realise what’s happening and what they’re doing to her. Mother 21 (female, aged 5).

Discussion and conclusions This paper has highlighted several issues that combine to shape mothers’ experiences of living with a child with a life-threatening chronic illness. The biographical shift to mother of a child with cancer required a fundamental redefining of mothers’ self-identities, bringing some new technical and nursing roles, whilst intensifying some of their existing roles and obligations. Prominent among the latter were parental obligations around protection and responsibility, which took on a heightened significance for mothers as they cared for their child through the demanding and extremely unpleasant cycles of treatment that the illness required. By maintaining physical proximity, mothers acted to ‘keep watch’ and provide ‘comfort’ to their children, and they went to great lengths to secure the emotional and physical wellbeing of their children as everyday concerns such as diet or ensuring their child’s co-operation became increasingly significant. Managing these obligations had many adverse effects on mothers’ quality of life, including severe role strain. Discourses on the particular character of the mother-child relationship and child development explicitly and implicitly shaped mothers’ concerns and their reflexive constructions of their experiences. To consider these issues further, and how they might feature in conceptualisations of mothers who care for ill children, we will suggest that it is useful to draw on several distinct bodies of literature that have previously

been given little consideration in published work on parents of children with chronic illnesses such as cancer. It is clear from our findings that one of the most prominent roles involved in mothering a child with cancer is that of carer, although few writings in psychooncology appear to have drawn on the extensive literature on informal carers. This literature has highlighted the value of social constructions in understanding the experience of carers and their interactions with services (Twigg & Atkin, 1994), and while it concentrates largely on spouse and filial carers of elderly people, some of the earliest writings in this field focused on the experiences of parents caring for disabled children (Voysey, 1975; Wilkin, 1979; Glendinning, 1983). Taken together, this literature has generated several useful concepts for understanding the experience of mothers as carers. The idea of ‘‘engulfment’’ (Twigg & Atkin, 1994), in which the carer finds it difficult to separate themselves from the suffering of the cared-forperson, where caring dominates their life and other aspects of their self-identity are submerged by caring, is a particularly important one. Many of the mothers in our study could be described as ‘‘engulfed’’ by their role of caring for their sick children, but to characterize the mothers in our study simply as ‘‘engulfed carers’’ does not give adequate recognition to their status and selfidentity as mothers, nor does it acknowledge the implications for their caring role of the social construction of children as vulnerable and dependent. Their child’s illness may have changed aspects of their selfidentities as mothers and brought some new roles, but for the women in our study it was the special character of the mother–child relationship or bond, and their obligations as mothers, that gave them a unique position as carers within the medical and social worlds. To fully understand the situation of mothers as carers therefore, it is important to engage with the sociological literature on motherhood. Feminist theorising on the family and motherhood has identified how for women in particular, motherhood is both a regulator of their lives (Boulton, 1983) and a major component of their selfidentity (Richardson, 1993). Though women with children increasingly adopt roles outside the domestic sphere, mothers’ emotional identification with their children remains strong (Mayall, 1996), and notions of maternal self-sacrifice in ‘‘putting the children first’’ (Richardson, 1993) and of children’s ‘‘best interests’’ (Sclater, Bainham, & Richards, 1999) remain powerful in both public and private discourses about motherhood and childhood. Motherhood is thus defined (at least in part) in relation to social constructions of children and childhood. The emerging sociological study of childhood has highlighted how the social construction of children has until recently been dominated by largely uncontested concepts, rooted at least in part in psychology, and how

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these concepts have structured the cultural climate of mothering (Burman, 1994): children are seen as incompetent and immature (James, Jenks, & Prout, 1998), and as vulnerable and dependent upon adult attention to ensure their well-being. Children’s ‘vulnerability’ arises not just from their ‘immaturity’: as people who are valued for what they will become as well as for what they are, much concern centres on protecting children’s future selves. Jenks (1996) has developed the concept of ‘‘futurity’’ to encapsulate this idea. This view of childhood is embraced by most western societies, and within its framework, parents, and particularly mothers, are morally (and to some extent legally) responsible, not just for their children’s current well-being but also for their future well-being. James (1998, p. 97) has suggested that childhood illness represents ‘‘a condensed symbol of childhood itself through intensification of concepts of dependency and vulnerability’’. Juxtaposed as they are for the mothers in our study, it seems that childhood and illness combined to heighten the significance of the diagnosis of childhood cancer. The Western construction of children as ‘‘natural innocents’’ (Ribbens, 1995), the rarity of cancer in children, the threat the illness poses to their ‘‘futurity’’, and the cultural association between cancer and death added to the sense of catastrophe that surrounded the illness. Moreover, our data would suggest that having a child made vulnerable by cancer augmented mothers’ obligations to protect their children and prioritise their interests. However, with the reordering of meaning prompted by their child’s severe and life threatening illness, these obligations required that mothers accommodate to the demands of medicine even though this meant submitting their children’s resistant bodies to unpleasant treatments and manipulating their wills in ways that threatened the entitlements of childhood. The enormous internal conflict and emotional work these opposing pressures generated for mothers was one of the most striking features of their accounts. How is the situation of mothers who care for chronically ill children to be conceptualised? First, it is clear that having a child with a life-threatening illness significantly alters several aspects of mothers’ roles. Mothers assume an obligation of ‘proximity’ to their child, which can compromise other aspects of their role function (including their responsibilities for and relationships with their other children and their partners), which has significant implications for their own quality of life. Second, in having a child whose vulnerability has been greatly magnified by cancer, other aspects of mothers’ roles and obligations are intensified, including their felt responsibility and protection for their ill children, and this takes place against a backdrop of greater complexity, reordered meaning and diminished control. Our data suggests this aspect of parenting a

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child with cancer was a major source of conflict and distress for mothers. Third, we would draw attention to the cultural discourses about motherhood, child development, childhood and cancer that the mothers in our study had to negotiate. These discourses shaped their concerns, and influenced the context in which they cared for their child and their reflexive constructions of it. Among the other consequences of this is a delegitimatising of their own needs, which are subordinated discursively and functionally to those of their sick child. Finally, having a child with a life-threatening illness means that mothers’ own biographies are threatened and disrupted, and they experience profound grieving for their former lives. Graham (1984) and others have pointed to how keeping a child healthy is a key component of the work of women, one through which their adequacy is judged by themselves and by others. The mothers in our study experienced the consequences of their child’s illness and treatment, and lived with the possibility that he or she might die or experience adverse long-term effects. Moreover, as they worked to guard their sick child’s biography, they also had to live with the altered self-identity of being a mother of child with cancer, and by virtue of their situation as mothers, many felt somehow implicated or responsible for what had happened to their child. Even if their children go on to experience little or no long-term effects, they will remain ‘‘survivors’’ of childhood cancer. In this sense the mothers in our study have lost their status as mothers of ‘‘natural innocents’’. Failure to recognise the special situation of mothers of chronically ill children risks misrepresenting or distorting their experiences. Psycho-oncology has been useful in raising awareness of the significant numbers of parents of ‘‘survivors’’ of childhood cancer who experience continued distress once the illness has abated. However, there are dangers in focusing on parents’ experiences solely within an individualised and decontextualised framework. Within such frameworks, parents’ concerns about, for example, their felt culpability in their child’s illness, or their tendency to blame the medical profession for their child’s late diagnosis, is considered a sign of their maladaptive coping (Eiser, Havermans, & Eiser, 1994). In recognising how having a child with chronic illness shapes and reshapes the biographies and obligations of mothers, we suggest that these tendencies are part of the narrative configuration of parenting a child in crisis: they are the ordinary, reflexive devices the women in our study used to understand and represent their extraordinary experiences of parenting. The reluctance of women in our study to give voice to their own needs can be understood as a means of demonstrating their adequacy as mothers of an ill child, and as a means of avoiding drawing attention away from their children, but may result in health professionals failing to recognise or meet

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mothers’ own needs. Our findings point to the importance of supporting mothers in ways that enable them to fulfil their role as parents of a child in crisis, to the part that services such as information provision can play in helping them meet their obligations, and serves as a reminder that help that might be construed as undermining their role and obligations is likely to be less than welcome. We believe our conceptualisation provides an adequate fit with the accounts of most of the women in our study, but there were a few women whose accounts did not fit certain aspects of our conceptualisation. In describing our findings we have generally tried to indicate where this was the case. Moreover, while we have tried to draw attention to a number of issues that are important in conceptualising the situation of mothers with children with chronic illnesses such as cancer, we recognise that there are a number of important questions that may affect this conceptualisation, but which we have been unable to address because of the limitations of our data. First, recent research has pointed to the role of children’s gender in influencing how mothers construct their role in managing the health of their older adolescent children (Williams, 2000). As our study focused on mothers of younger as well as older children, we could not address the issue of gender separately from child age. Second, because of resource limitations, we were mostly unable to triangulate the comments of the mothers in our study with those of fathers or other close family members, and though we interviewed children we found that it was rare for them to comment in detail on their mothers’ experiences. However, we aimed to base our conceptualisation largely on how mothers themselves constructed their situation, so it is unlikely that the inclusion of data from these other parties would significantly alter our conclusions. Third, though our study focused on mothers of children who were on or recently off treatment for their cancer, further research examining how mothers construct their situation beyond this time would be useful to explore the degree to which biographical disruption extends beyond the treatment period, and to identify how our conceptualisation would need to be adapted to encompass the likely diverging experiences of mothers in the longer term. Finally, we decided to focus on mothers as they remain primarily responsible for childrearing in Western societies, but would suggest that consideration be given to conceptualising the situation of fathers, other close family members and friends. It is now 20 years since Comaroff and Maguire (1981, p. 116) cast doubt on the appropriateness of using ‘‘criteria of psycho-social normality, coping and adjustment’’ for assessing the impact of having a child with cancer, yet such individualised and decontextualised approaches have continued to dominate the research agenda despite their modest explanatory value (e.g.

Sloper, 2000). Our study has focused on the particular ways in which mothers’ roles and biographies are shaped or altered by having a child with chronic illness, and on how their obligations and their reflexive constructions of these obligations impact on their experience and govern how they manage caring for their child. We suggest that future research can move forward by recognising these psychosocial processes and the social context within which being a mother of a child with chronic illness takes place.

Acknowledgements We would like to thank the participants in our study and the staff who made it possible. We are grateful to the UKCCSG, the Ward 27 Children’s Cancer Fund and the Sir Jules Thorn Charitable Trust for the funding which helped us to carry out the interviews. Our thanks go to Keith Abrams for his support with the study and to Catherine Exley for her helpful comments on an earlier draft of this paper.

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