Childhood cancer and users’ views: a critical perspective M. DIXON-WOODS, dphil, Department of Epidemiology and Public Health, University of Leicester, Leicester B. YOUNG, phd, Department of Psychology, University of Hull, Hull, & D. HENEY, md, Children’s Hospital, Leicester Royal Infirmary, Leicester, UK DIXON-WOODS M., YOUNG B. & HENEY D. Correspondence address: Dr M. Dixon-Woods, Department of Epidemiol-ogy and Public Health, University of Leicester, 22–28 Princess Road West, Leicester LE1 6TP, UK (e-mail: md11@le.ac.uk). INTRODUCTION In this paper, we will argue that much of the research on users of childhood cancer services to date has been conducted primarily within a discourse of psychopathology, that research has been on rather than with children and that parents’ unique perspectives have been neglected. Critical perspectives, based in particular on interpretive approaches and sociological insights, can, we conclude, help to provide more sensitive and helpful insights. Perspectives on childhood illness The sociology of childhood has increasingly identified children as members of an often disadvantaged, marginalized or vulnerable group, with their own specific interests that are not necessarily identical to those of their parents (James & Prout 1990). The emerging sociological critique of childhood suggests that children have been denied agency within a number of discourses (Mayall 1996). In particular, the traditional discourse around childhood ill-ness within medicine has appropriated concepts from developmental psychology, often in an undertheorized and uncritical way. This tradition has emphasized children as the subjects of developmental processes (Bibace & Walsh 1980) and socializing influences, and focused in particular on the psychological difficulties experienced by ill children (Varni et al. 1994). Children tend to be characterized in this discourse as the victims of psychologically as well as physically malign processes, prone to problems such as separation anxiety, social withdrawal, post-traumatic stress disorders, isolation and dependency (Barakat et al. 2000). Critics have also argued that wider social discourses have sought to construct children as innocent, vulnerable and needing to have their ‘futurity’ protected (James 1998). The social transformation of adult patients, over the last 20 years or so, from passive and grateful recipients or ‘subjects’ of health care into active and critical consumers has been a movement that has largely left children as patients behind. For example, a recent paper on decision-making about anaesthesia for children acknowledged the importance of patient autonomy and involvement in decision- making, but focused exclusively on parental participation (Tait et al. 2001). Thus, despite evidence that children are capable of producing rational and coherent accounts of areas in which they have experience (Davis & Jones 1996), children’s views have until recently been rarely sought directly by those researching experiences of childhood illness. The professional and academic dominance by conventional psycho-pathological approaches seems to have contributed to this neglect of children’s own views: the psychometric measurement of quality of life relies largely on questionnaire-based methods that are potentially problematic in terms of readability and comprehensibility for children, and which impose discrete categories on what is likely to be a complex, multilayered and evolving experience for children. Although measurement of quality of life will continue to have an important role, particularly perhaps in clinical trials, and while we are seeing some progress in developing instruments more sensitive to children’s views and abilities (Eiser & Morse 2001), it is vital that this work is complemented by and grounded in rigorous qualitative research. Having childhood cancer There is a small literature that has reported children’s talk about cancer, but this has been largely (though not exclu-sively) North American (e.g. Sourkes 1995), and the data have suffered from a want of critical interpretation, often seeking to explain the findings within a framework of psy-chological constructs (Faulkner et al. 1995). Interpretive, theoretically innovative research on the experience of childhood cancer has been largely lacking. Theoretical treatment of the emerging body of qualitative research (Woodgate 2000) is likely to show that concepts from the sociology of health and illness which have been developed for adults, need to be reformulated in ways that acknowledge both contemporary developments in the sociology of childhood and empirical research. In particular, the compromises of autonomy and the complex struggles between dependency and independence on the part of children with cancer, the particular character of childhood cultures, critical issues of language, and the nature of children’s agency, need to be addressed. Interpretive perspectives would, of course, argue that children are active participants in the social construction of both their experiences and their illness, and in the interpretive reproduction of cultures around their illness (on children’s wards, for example, where distinctive and internally coherent cultures that normalize having cancer may exist). Exploring what cancer means for children has, however, been inhibited until recently by lack of suitable methods. We are now seeing the development of methods that can allow children to explain about their experiences on their own terms (Backett & Alexander 1991). Many of these rely on techniques such as ‘write and draw’, and are promising, though publications thus far have focused primarily on healthy children (Oakley et al. 1995). The need for a democratization, to provide opportunities for children to resist the researchers’ control of the research process has been emphasized (Mayall 1994), with methods such as focus groups seen as one of the means for encouraging this. Again, application to the area of childhood cancer has been very difficult, in part because of the potentially grave practical and ethical problems associated with asking very ill children to discuss their experiences semi-publicly for non-therapeutic purposes (BMA 2000). Observational work, both participant and non-participant, with children in settings such as hospital playrooms and schools could potentially overcome some of these difficulties. For sociologists, the narrative interview has, of course, provided researchers with very rich and potent insights into adults’ experiences of chronic illness, including cancer. Bearison (1991) reports narratives from North American children with cancer, but fails to offer any sustained theoretical treatment of these accounts. It is important that we begin to investigate whether children’s narratives are fundamentally different in both form and function from those of adults; to explore whether the form of children’s narratives varies according to developmental age and ‘illness’ age; and to analyse the extent to which their narratives follow ‘adult’ conventions and whether they incorporate distinctive elements of fantasy, myth or received knowledge. It will be particularly important to look at ‘ownership’ of narratives: children may feel that their story is owned by others, perhaps particularly by their parents. Similarly, the functions that children perform in telling their stories require study: for children, some of function at least may simply be the telling and the holding of someone’s attention. Clearly, both theoretical and empirical research is needed into children’s narratives, though several daunting methodological and ethical that may exist between researcher and researched (Holmes 1998). As methods develop, they can be used to explore important themes, including the relevance of commonly used sociological constructs in explaining the experiences of children with cancer. It is particularly important that children’s sense of identity and of ‘illness’ be properly understood, especially as James (1998) has drawn attention to the important negotiations of identity that children with common childhood illnesses engage in and other research has shown children’s difficulties in adopting a ‘sick role’ (Davis 1982). The uncertainty, unpredictability and search for meaning associated with the outcomes of childhood cancer, highlighted in an early paper (Comaroff & Maguire 1981), together with the closed world and institutional context associated with long periods of in-hospital treatment, make these issues of identity and negotiation all the more pressing. Other constructs, such as biographical disruption, which are very prominent in adults’ accounts of their experiences of chronic illness, also need to be explored from the perspective of children. Work that focuses on biography may be particularly important in exploring children’s communication and information needs and capacity to understand, because experiential knowledge may be acquired by children not along a stage-like developmental chronology, but along a biographical chronology determined by their own illness. In addition, the relevance of constructs such as emotional labour for children need to be investigated in the light of evidence suggesting that children may engage in work to protect their parents’ well-being. Narrative-based research might also be extremely helpful in developing sociological approaches (Bendelow 1996) to childhood pain that could illuminate understanding children’s experiences of this aspect of cancer. Techniques other that the direct interrogation of children will also be needed to explore key issues of communication and language. The sociology of professional– patient relationships has traditionally seen children as a peripheral group (Strong & Davis 1978), and little research has focused on the child’s experiences of communication. There is a danger that the children’s rights movement and the drive to seek and value users’ views could result in adverse outcomes for children if untested models of partnership and user involvement are uncritically applied to childhood cancer (Dixon-Woods et al. 1999). Child partnership models need to be based on demonstration of the benefits of shared decision-making, adequate investigation of the requirements for support and evaluation of potential negative consequences. In cancer, as in other very serious diseases, decision-making is undertaken with a particularly profound sense of the consequences, and participation in decision-making in childhood cancer therefore raises especially complex problems. The management of a three-way relationship (parent, child and professional) is further complicated by issues of development and instincts for protection on the part of adults involved in consultations. These issues are particularly important in relation to children’s consent, and in considering chil-dren’s participation in clinical trials and other research. Observational and conversation analysis techniques could do much to explore these issues and to investigate issues of power, participation and decision-making, the extent to which children are silenced (or not) by interactive strategies used by parents and health professionals and what the outcomes are (Robins & Wolf 1988). Other work that needs to be done concerns issues of information provision using media such as leaflets and videos. Here we need to see the development of systematic quality criteria, grounded in the preferences of children themselves, for appraising information given to children. Parenthood and childhood cancer The issues raised in conceptualizing users’ views in relation to parents of children with cancer are striking. On the one hand, we have seen a movement to recognize the active and critical perspective that users of services bring (Williams & Calnan 1996). On the other, there is a tradition within research on childhood illness of seeking the reports of parents as proxies for children. This practice has a doubly silencing effect, resulting in parents’ voices being heard as speaking on behalf of their children, and not on behalf of themselves, and children’s voices being unheard. The unique moral and legal status of parents as guardians of their children’s well-being and the complexity of their roles as caregivers, advocates and individuals in their own right is thus underestimated, though there is a literature on parenting a child with cancer. This literature has tended to characterize parents’ adaptation to their child’s illness in terms of ‘maladjustment’, anxiety, and distress (Hughes & Lieberman 1990) but has done little to illuminate the processes involved in how parents live with their child’s illness. There is also a smaller literature, some of it using qualitative methods, which has drawn attention to the kinds of problems that parents experience, particularly in their interactions with health services (Eiser et al. 1994; Sloper 1996). A critical and interpretive approach to these problems could help to improve insight into the nature of parents’ experiences and advance the theoretical understanding of this area. Parenting a child with cancer needs to be recharacterized to draw attention to how parents’ identities and social obligations position them in relation to the medical world, to highlight the emotional work carried by parents and to show how becoming and being a parent of a child with cancer invites surveillance of parenthood (Young et al. 2002). The process of becoming a parent of a child with cancer begins when parents first begin to notice something amiss with their child’s health. For some parents, their experi-ences in obtaining a diagnosis are so protracted and traumatizing (Dixon-Woods et al. 2001) that they shape subsequent relationships with health professionals in unhelpful ways. For virtually all parents, becoming a parent of a child with cancer marks a striking biographical transition. Research looking at mothers’ experiences of childhood cancer has shown that the biographical shift to mother of a child with cancer requires a fundamental redefining of their self-identities (Young et al. 2002). The literature on informal carers, in which some of the earliest examples focused on the experiences of parents caring for disabled children (Voysey 1975), provides some useful conceptual tools in theorizing the experiences of parents. Our research on mothers suggests that, although some aspects of mothers’ self-identities are indeed challenged, changed and even undermined by their experiences of caring for their child with cancer, their identities as mothers, established long before their child’s illness, are unlikely to be subsumed by, or lost to, their caring role (Young et al. 2002). Generally, our work suggests that the experience of being a parent (particularly a mother) of a child with cancer is most appropriately represented as an intensification of the existing role of parent rather than as an adoption or extension of the role of carer. This is not to deny the overlap and continuities that exist between these two roles, but it is to underscore the importance of relationship, status and self-identity in caring for a child with cancer. Having a child whose fragility and vulnerability have been exposed and amplified by cancer augments parents’ obligations to protect their children and prioritize their interests. Mothers engage in emotional labour, often by staying close to their child at all times, and everyday concerns, such as securing the cooperation of a reluctant child, take on a reordered meaning when it is necessary for the survival of that child. Mothers, in exercising these ticular needs that many currently used methods for seeking views may not access. This problem is not one solely of theoretical interest: the measurement of quality of life is increasingly a requirement of clinical trials, and using instruments that do not seek parents’ views (on behalf of themselves, not their children) risks producing results that are misleading or invalid. Further research is also now needed to advance earlier work (Sloper 2000) into the experiences of other proxy users of services including grandparents, siblings and other relatives, as well as the very important but under-researched experiences of fathers. It will also be important to explore issues that impact upon the experiences of childhood cancer but which cannot be directly accessed solely by research with children or parents themselves. An understanding of the social construction of childhood cancer, for example, is essential to explaining the experiences of families of a child with cancer. Work on the media construction of childhood cancer, and further investigation into lay views of childhood cancer, is now needed. CONCLUSIONS We have argued that the study of users’ views of childhood cancer services benefits from critical interpretive perspectives that can restore agency and reflexivity to children and to parents. We have suggested that the study of childhood cancer has until recently been dominated by criteria of psychosocial normality, coping and adjustment, and have proposed that such individualized and decontextualized approaches have given little priority to users’ views. In considering how research in this area might move forward, it is clear that much hinges on the development of appropriate methods for accessing, analysing and representing the views of children, and on reformulating our conceptualizations of parents. Tensions and unresolved issues remain, for example, in exposing and challenging the traditional assumptions of children’s incompetence and vulnerability. The sociology of childhood has provided a fresh and engaging perspective from which to theorize the experience of childhood cancer, but we must remain aware of the dangers misrepresenting children’s views by inappropriately applying the methods and concepts developed in researching adult users’ views. European Journal of Cancer Care, 2002, 11, 173–177 Euro J Cancer Care Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.