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‘It takes three to tango’:
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‘It takes three to tango’: a framework for understanding patient partnership in paediatric clinics Jonathan Gabea,*, Gillian Olumideb, Michael Burya b
a Department of Social and Political Science, Royal Holloway, University of London, Egham TW20 0EX, UK Centre for Health Economics and Policy Studies, University of Wales Swansea, Singleton Park, Swansea SA2 8PP, UK
Abstract Since the late 1990s, the term ‘partnership’ has increasingly been inserted into the literature and rhetoric of the UK healthcare system. In this paper, the assumptions and implications surrounding the usage of the term in relation to doctor–patient interaction are examined in the context of paediatric services. The paper considers recent ideas about partnership in medical encounters, especially those of Charles et al., and the extent to which they are applicable to children. The paper then goes on to develop a framework for understanding patient-partnership issues. It is argued that any investigation of partnership will need to take account of the organisational and legal setting, as well as the beliefs and agendas that all parties bring to the medical encounter. In the context of paediatrics, the perspectives of three actors—the child, parent and health service professional—need to be explored. Our framework allows for different sorts of ‘coalition’ to develop between these actors as they try to reconcile their perspectives in the clinic and offers a situationally contextualised view of partnership. We also argue that these matters require study outside as well as inside the clinic, through the use of a range of methods, including those that help children at home review their involvement in decision making in the clinic. r 2004 Elsevier Ltd. All rights reserved. Keywords: Paediatrics; Patient partnership; Doctor–patient interaction; UK
Introduction The notion of partnership between patients and their doctors has increasingly been advocated in health policy circles in the UK in recent times and is now a key element of the present Labour government’s modernisation agenda. It seems to be assumed that it is equally relevant to all patient groups and that its desirability should be accepted as a matter of course. Yet little is known about the relevance and practicality of achieving partnership in health care. In particular, little attention has been given to the differing age groups, including children, who may be involved in health-care partnerships, and what this might mean for routine clinical encounters. This paper sets out a framework for developing empirical work to explore *Corresponding author. Tel.: +44-1784-434375; fax: +441784-443144. E-mail address: [email protected] (J. Gabe).
assumptions about partnership in health care, especially in the context of paediatrics. The paper starts by outlining the basic ideas involved in partnership that have been advocated in policy and academic circles in the UK in recent years and then considers their applicability to children. The work of Charles et al. on decision making and partnership is given particular attention as it provides some useful suggestions for developing a framework for analysis. However, we take a broader view of partnership which goes beyond decision making in the clinic. Several steps are then taken in developing our own framework for analysis. First, it is argued that the potential for partnership between child patients and their doctors is shaped by the organisational and legal setting that creates boundaries for the consultation. This may either promote or restrict the fostering of partnership in health care. Second, the differing perspectives that the three parties involved—child, doctor and
0277-9536/$ - see front matter r 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2003.09.035
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parent—bring to the clinical encounter are considered. Clearly, partnership involves at least a degree of agreement, or at least mutual respect for the different ‘agendas’ that each may have. The process of reconciling these agendas is likely to influence the dynamics of the triadic relationship in the consulting room and the coalitions that might be generated. The idea of coalitions in the face-to-face consultation forms the third part of the framework. This approach to analysing partnership in paediatrics, and whether it is accomplished between child patient, parent and doctor, is thus contingent on paying attention to a number of contextual and interactional factors that need to be established empirically. Partnership may be achieved (or not) as the result of factors outside of the consultation and the dynamics of interactions inside it. The methodological issues involved in understanding the process of accomplishing partnership with children are explored in the final section.
Ideas about partnership The details of what partnership is and what it involves are still under negotiation, but this has not stopped it becoming a vogue word in UK policy circles. The Department of Health (1999), for example, has suggested in its circular ‘Public Involvement in the New NHS’, that it involves at least four elements. First, it is noted that people want more information about their health and illness, and they want it contextualised to their particular circumstances. Second, it is suggested that National Health Service (NHS) staff need to listen to health service users in order to provide more relevant and responsive services. Third, transparency and accountability are advanced as desirable aims that can only be properly pursued if patients are seen as partners in care. Fourth, it is posited that the involvement of patients in their care increases patient satisfaction with health services in general, and at the point of delivery. Clearly, partnership may involve all or some of these features, or indeed others, particularly with regard to shared decision making. The recent development in Britain of a National Service Framework for children ties in some of these features in an attempt to raise national standards of care. Whatever its content, however, partnership has superseded an earlier model of patient involvement based on consumerism, patients’ charters and the need for the health service to be responsive to knowledgeable individuals who shop around for their health care (Calnan & Gabe, 2001). For academic commentators partnership has been placed in opposition to a long-standing ‘paternalism’ in health care. For example, Coulter (1999), in a British Medical Journal editorial, makes strong and clear statements about the nature of partnership. Overall,
she sees the main components of partnership as involving the establishment of common goals, the recognition of mutual respect, the absence of hierarchy, and the sharing of decision-making between patients and their doctors (see, also, Coulter, 2002). In a series of conceptual and empirical papers, Charles, Gafni, and Whelan (1999a) also engage with the question of what partnership in decision making might involve, having developed the view (Charles, Gafni, & Whelan, 1997; Charles, Redko, Whelan, Gafni, & Reyno, 1998; Charles, Gafni, & Whelan, 1999b; Charles, Gafni, & Whelan, 2000) that shared decision making and the exchange of information between patient and physician will feature strongly in the discussion of partnership—the latter being a prerequisite of the former. They suggest three theoretical models for conceptualising the physician–patient encounter in the recent history of developed countries: the paternalistic model (doctor makes treatment decisions and patient accedes); the informed model (doctor lays out treatment possibilities and the patient makes the decision); and the shared model (doctor and patient interact throughout the decision making process). The last two of these models (discussed and contrasted in Gafni, Charles, & Whelan, 1998) may well imply the necessity for extra resources (in time allocated for consultation and possibly in other areas such as the development of aids to understanding and communication)—an argument, or claim, that is expressed by practitioners in a variety of specialisms and by patient groups. The middle option— the informed model—certainly implies a shift of responsibility to the patient. These authors suggest that partnership becomes more pressing with the seriousness of the condition and the complexity of treatment options, though individual patients may well wish the doctor to take control at some points in an illness trajectory, especially where the condition is life threatening. Charles et al. (1999a) acknowledge, in this connection, that doctor–patient encounters are likely to move between components of these ideal types. As it is patients who will live with the results of decisions, it seems reasonable that their preferences should be incorporated into treatment plans. However, the re-orientation towards partnership has been primarily a ‘top down’ change rather than a response to ‘bottom up’ pressures from patients. Indeed, existing research casts doubt over whether patients are ready and willing to take on increased decision making responsibilities (Calnan & Gabe, 2001) and it is even less clear whether this is so of specific patient groups, such as children. We therefore turn next, in developing our own framework for analysis, to consider the factors involved in accomplishing partnership with this patient group. We suggest that the opportunity for partnership in paediatrics is framed, first and foremost, by the organisational and legal setting of the hospital clinic.
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The organisational and legal setting It has long been recognised that formal relationships in health-care organisations, and their legal underpinnings (Dingwall, 1994), establish the boundaries for legitimate behaviour and influence the content of social interaction, independently of the characteristics and perspectives of the individual participants (Freidson, 1970). Strong (1979) took this as the starting point for his comparative study of paediatric clinics in the UK and USA. He found that while there was a certain continuity between the publicly funded NHS clinic in the UK and the fee-for-service US clinic (in terms of the technical dominance of the doctor and a politeness ethic where the moral worth of the patient was not questioned) there were also important differences that had a bearing on social interaction. Of particular relevance to the issue of partnership was the impact of the bureaucratic format on the NHS clinic, which offered a standard, somewhat impersonal approach with a minimum of choice. This format was also reflected in the nature of the physical setting in which doctor and patient met and the way care was organised. Many NHS clinics, including paediatric ones, are currently housed in functional rooms with little sign of comfort or personalised touches. As Silverman puts it, in his study of NHS and private paediatric clinics, the NHS ‘territory’ is usually one characterised by ‘unadorned white walls, no carpets, simple furniture y heating pipes and radiators are very obtrusive’ (Silverman, 1987: 114). By contrast, ‘to enter the consulting rooms of the private clinic is to enter a different world’ (Silverman, 1987). Here, the physical setting is characterised by good quality carpeting and furniture, comfortable chairs and the presence of such adornments as pot plants. This approach to the territory links well with the nonbureaucratic format and privacy that the private clinic affords patients. Appointments are longer and arranged to suit the patient’s convenience. The doctor is not interrupted by others, provides personalised continuity of care and a personalised service, exemplified for Silverman by the fact that the doctors he observed stood up and shook the hands of the patient and their relatives at the beginning and end of each consultation, and even helped patients on with their coats (Silverman, 1987: 121). The more bureaucratic format of the NHS clinic, and its physical embodiment in often poor standard accommodation, is also reflected in the way patients are managed. Thus, they are likely to be given tight time slots and pressurised to attend on time or meet professional opprobrium, though they may have long waiting times themselves at the clinic once there. They may not be seen by the same doctor as in previous clinic visits, and may well have their consultation with the doctor interrupted by others coming into the room. As
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Silverman noted in his study, the NHS clinic is often characterised by the coming and going of students, junior doctors, nurses and other personnel, whether or not patients are seeing the doctor in question at the time (Silverman, 1987: 114). The point of note here is that the bureaucratic and physical setting of clinics needs to be seen as part of the context in which patient involvement in decision making occurs, and thus part of any framework that sets out to analyse issues linked to partnership. The questions at issue then become to what extent the clinic demonstrates to the patient and family that they are simply part of a bureaucratic setting, and whether this affects the ability to achieve partnership as and when the doctor, patient and family members meet? In the case of paediatrics, as in other spheres of medicine, the legal context is also important. Two legal documents are particularly relevant to the framing of attempts to achieve partnership. The first is the United Nations Convention on the Rights of the Child, which was approved by the UN in 1989 and ratified by the UK in 1991 (Hill & Tisdall, 1997). The Convention defines childhood as ending at the age of 18 (whereas the NHS uses the age of 16) and suggests that ‘the child, by virtue of his (sic) physical and mental immaturity, needs special safeguards and care, including appropriate legal protection, before as well as after birth’ (taken from the Preamble of the 1959 Declaration of the Right of the Child—UN Document A/4354 1959: 2). Article 5 of the Convention affirms support for the ‘rights, responsibilities and duties’ of parents, extended family or community (as dictated by local custom) or for whatever legal arrangements are in place for the custody of the child. It is Article 12, which speaks of the child’s right to form and express his/her own views, that tends to interest and motivate those working from a ‘children’s rights’ perspective (see, for example, the editorial of Childhood 6(4) 1999). In this Article, there is an acknowledgement that the child’s views will be ‘given due weight in accordance with the age and maturity of the child’ (UN Convention, 1989. Article 12: 1). This Convention seems both to discourage and encourage doctors to develop partnership with children. On the one hand children are seen as immature and in need of protection; on the other they have a right to be heard. In a similar way, the UK Children Act 1989 places a duty on local authorities, in the discharge of their duties towards children needing to be accommodated, both to discover and to take account of the child’s views about accommodation (Article 20) and more general matters (Article 22). Again this is to be undertaken ‘having due regard to his (sic) age and understanding’. A second legal frame is provided by a legal ruling with regard to what has come to be known as ‘Gillick competence’ (after Victoria Gillick’s failed case against Norfolk Area Health Authority in 1985, concerning her 16 year old daughter’s prescription for the contraceptive
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pill). This ruling is explained by Brook (2000) in the following way:
*
Gillick competence is therefore judged to be achieved when: a minor, in the opinion of the treating doctor, has ‘sufficient understanding and intelligence to understand fully what is proposed’, (is) ‘capable of making a reasonable assessment of the advantages and disadvantages of the proposed treatment’ and (has) ‘sufficient discretionyto make a wise choice in his or her own interests.’ Though the Gillick case dealt with contraception, ‘Gillick competence’ is applied to other types of medical care. (p. 33)
This legal principle more clearly encourages doctors to involve children in decision making about their health care, but gives them the discretion to judge for themselves whether a particular child is ‘competent’ to become a ‘partner’ in such decision making, to the extent of potentially overriding ‘parental responsibility’. The legal context thus both constrains and encourages paediatricians to develop a partnership with child patients. The empirical questions, which flow from this part of our framework, are therefore to what degree are organisations and health-care professionals aware of or are affected by the legal considerations that apply at any given point, and how might these affect the arrangements and management of patientprofessional contacts, especially the extent to which the child patient’s interests are balanced against parental views?
Participants in the paediatric consultation Moving from the organisational and legal setting to that of the consultation itself, the assessment of the opportunities for partnership with children is the realisation that shared decision making in the paediatric consultation may well be between more than the physician and patient, as noted above (see also Dixon Woods, Young, & Heney, 1999). As Charles et al. (1997: 285) acknowledge in relation to another patient group to which this also applies—the elderly— decisions in health care may well involve and have an impact on the carers and family as well as the patient. Clearly, in paediatrics, at least one parent is likely to be present at the consultation as well the child and their doctor, yet few studies of doctor–child–parent communication have taken the triadic nature of this communication into account, focusing instead on either paediatrician–child or (most usually) paediatrician– parent interaction (Tates & Meeuwesen, 2001). Tates and Meeuwesen therefore suggest that a plural perspective is required that takes account of the three actors in
the medical encounter and the additional complexities this can cause. Such triadic encounters are likely to generate differences of opinion, if not more major rifts, as the parties concerned may have their own agendas or standpoints that bear on their behaviour. Opportunities for partnership in paediatrics are thus shaped by the perspectives of the different actors and their power to influence the outcome of the consultation. Below we consider the viewpoints of parents, doctor and child and what bearing these may have on accomplishing partnership. The parent’s perspective Traditionally parents have had a powerful influence on children and their opportunity to express their own views about the care they wish to receive. Sociological research in the 1970s and 1980s revealed that parents and doctors tended to discuss the child’s illness without seeking to include the child’s own point of view (Silverman, 1987; Strong, 1979; West, 1976). For example, Strong found a clear unwillingness to admit the child to any relationship of equality or partnership, and parents in his study seemed to accept this arrangement. Possibly such parents felt disadvantaged in terms of the power differential they experienced with their doctors, but, like many adult patients at this time, were willing for the doctor to set the agenda. In West’s study, while the child remained passive over the course of a series of consultations, the parents became increasingly active participants as they became more knowledgeable about the condition. Rhetoric about the place of children in health care has certainly evolved since these studies were completed, and parents may now be more willing to encourage their children to participate in paediatric consultations. Whether this is so is an empirical question that has yet fully to be addressed. One recent interview-based study of young people with a potentially life threatening chronic illness and their parents, attending a paediatric oncology clinic, suggests that parents often still act in an executive-like capacity, managing what and how their children are told about their illness, especially at the time of diagnosis (Young, Dixon Woods, Windridge, & Heney, 2003). Observational research and studies involving children and young people with non-lifethreatening chronic conditions need to be undertaken to confirm this finding. In the meantime we can note James and Prout’s (1996) discussion of variations in family life and the consequences of such variability for children’s perspectives on social action: y within these different kinds of families there will be a range of diverse cosmologies shaping the day to day flow of family life: families which place high premiums on discipline and punishment at one
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extreme end and, at the other, those whose lack of hierarchical order is more reminiscent of the swinging 1960s than the back to basics 1990s. The experiences of family life of children from these very different kinds of home environments would, we suggest, again be quite dissimilar and permit children access to very different perspectives on social action with ramifications beyond the family environment. (p. 47) Such variability in parental views is likely to be reflected in the division of labour with regard to health work at home (Mayall, 1993). The extent to which children are encouraged by their parents to take responsibility for health maintenance tasks, or the taking of medicines as prescribed, will in turn have a bearing on the nature of the paediatric encounter, the extent to which the parent seeks to speak on behalf of the child, the child’s willingness to take an active part in the consultation and their subsequent compliance with whatever is decided. The doctor’s agenda While a significant number of general practitioners have long accepted the need to treat the patient as expert and involve them in decisions about their health care (Byrne & Long, 1976; Tuckett, Boulton, Olson, & Williams, 1985) paediatric consultants have been slower to move towards such a view. One reason for this is that these doctors have traditionally seen child patients as ‘incompetent’ and thus of subordinate status in the paediatric clinic. According to Strong (1979), such a viewpoint has been endorsed by parents, giving doctors carte blanche to exclude their children from the decision making process. As he puts it: y. children’s incompetence and subordinate status, when coupled with their acceptance of that status and its sustained enforcement by adults, meant that they could readily be excluded from large areas of interaction and that consultations could take place principally between staff and children’s adult representatives. (p. 199) The reference to ‘incompetence’ in the above quotation in turn relates to assumptions that paediatricians are said to hold about children’s immaturity and inadequacy of self-expression. They believe that children only become competent to comprehend and comply with adult-directed medical discourse with age. For example, Silverman (1987) notes, in discussing the transfer of responsibility of the child’s diabetes from parent to child, that doctors assume that: ythe parents—usually the mother—will be centrally involved up to the age of, say, ten. However, as the child enters her teens, she is treated quite openly as
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the person to whom medical encounters are directed and the person who should be making the decisions regarding her health care. (p. 211). This may well be the way ‘rule of thumb’ behaviour develops in paediatric medicine, and beyond, with an assumption that a particular child will eventually be sufficiently advanced to comprehend and comply with adult-directed medical discourse. The relationship of chronological age to a perceived ‘age of competence’ may be fluid, with the assessment of competence resting in the hands of the doctor. If necessary, their decision may override a parental wish about treatment, thus demonstrating the ultimate authority of the doctor in resolving any conflicts of interest that may occur. Realistic decision making, whether mundane or more exceptional, implies information upon which decisions may rest. It is in this area that assessments of competence become problematic. Is it a matter of whether the child is competent or incompetent to make decisions that is the sole issue here, or is the nature of the explanation of choices offered by the doctor also part of the equation? If a patient (of any age) does not understand treatment choices, is it the fault of the patient for lacking competence or is there a responsibility for achieving comprehension on the part of the ‘expert’? Donaldson (1978), querying Piagetian assumptions about the reasoning ability of very young children, shows that the nature of a task and the explanation of a task influence considerably a young child’s ability to perform the task in question. Furthermore, the child may be considered incompetent in adult judgement simply because the adult does not have the skill and perception to communicate the requirements to the child. This question of professional competence rather than that of the child may become a key concept when developing partnership in paediatric settings. In assessing competence to participate in medical decision making, it may be prudent, therefore, to enquire ‘whose competence?’ The quality of explanation must certainly count alongside assessment of a child’s understanding; a point underlined by Hart and Chesson (1998) who suggest, on the basis of existing evidence, that children’s perceptions of illness and treatment may be at some variance from those of parents and health carers. This argument depicts children as ‘consumers’ who are ill-served by existing arrangements for eliciting their preferences in health care. The authors highlight the importance of seeking methods of communication and expression of relevance to the child, and conclude: Healthcare professionals will not be able to allay children’s fears and respond to their needs unless they are prepared to develop effective means by which children can communicate with them. Seeking children’s views appropriately is important not only
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for the individual child and his or her family but also for the future of the NHS. Consumer participation is a prerequisite in bargaining assertively for quality health care (p. 1603). In sum, doctors’ assumptions about the age of children’s competence and their own competence to explain the treatment options available to child patients can both influence the potential for partnership in paediatric consultations. But how do children themselves feel about being partners in their health care? We turn to their perspective next. The child’s standpoint Recent social scientific writing on children has challenged the deficit model of the child as someone who is lacking in competence and adequacy of selfexpression and has focused instead on what children can do (Mayall, 1996; James, Jenks, & Prout, 1998). Those working from within this framework, sometimes called ‘new childhood studies’, argue that children are social actors who participate in the social world and whose knowledge and experience are worthwhile for their own sake and for the insights they offer into the condition of childhood. They therefore emphasise the desirability of canvassing the points of view of children and involving them in plans and fact finding about issues of interest and concern. Children’s knowledge of the state of childhood is found to be essential to the realistic planning of services for children. There are now a number of studies that have begun to canvass directly the views and knowledge of children on health matters (for example Almarsdottir & Zimmer, 1998; Backett & Alexander, 1991; Bendelow & Oakley, 1993; Mauthner, 1997; Mayall, 1996; Oakley, Bendelow, Barnes, Buchanan, & Hussain, 1995; Secker, Armstrong, & Hill, 1999). Secker et al., for example, examine the views of groups of teenagers about mental illness. Their findings, it is claimed, are of value to health promotion units seeking to address negative stereotypes of mental illness, as well as being interesting in their own right as providing an insight into the ‘lay’ construction of meaning and causes of mental illness. The study by Oakley et al. investigates awareness and knowledge about cancer and cancer prevention in two groups (15– 16 and 9–10 years of age). Again this is valuable as a planning resource for health education as it highlights the ways in which knowledge is acquired and deployed within these age ranges and to whom responsibility for health-maintenance is attributed. What children think of becoming partners in their health care remains almost unexplored, although there are some studies of supported decision making in health and social care (e.g. Alderson, 1993; Brook, 2000; Thomas & O’Kane, 1999) and a recent study of
managing communication with young people about cancer (Young et al., 2003). These studies tend to focus on fairly serious and dramatic situations (such as children facing life-threatening conditions and major surgery or children living apart from their families) rather than routine medical treatment settings. However, the Thomas and O’Kane study, although concerned with participation in decision making by 8–12year-old children who are looked after by local authorities in England and Wales, is of relevance to understanding child participation more generally. The authors find, as with Mayall (1996), that the structures (or conceptualisations of children by adults) within which children act have great bearing on the child’s ability and opportunity to participate in decisionmaking. Likewise, the study by Young et al. (2003) found that parents’ desire to protect their child’s well being shaped their child’s opportunity to participate in consultations. Most of the young people in this study saw themselves as occupying a marginal position in consultations, without direct access to information about their condition. Also of interest is Bendelow and Brady’s (2002) investigation of children’s and parents’ accounts of compliance over taking Ritalin to address ADHD. They note that children (and parents) in their encounters with health professionals were aware that their view was not perceived to be as important as that of the ‘expert’. As they remark, current health service rhetoric says that parent/patients are now in partnership with professionals, yet it was clearly not the case that the children in their study were equal in this relationship. (p. 174) Bendelow and Brady’s study, like many of the recent studies of children, highlights the extent to which relations of power are of importance in understanding childhood experience. Whilst adult and professional power can be shown to have a bearing on children’s experience, as highlighted by the number of utterances by each party in the paediatric consultation, it would be quite wrong to suggest that children cannot and do not exercise their autonomy or ‘countervailing power’ in a variety of ways and for very different reasons. This must be borne in mind when analysing the behaviour of children in relation to the clinic and to the acceptance of suggested treatments.
It takes three to tango in paediatrics The above discussion of the perspectives of parent, doctor and child highlight the ways in which each actor in the paediatric consultation brings certain assumptions and experiences to the consultation which have a bearing on the accomplishment of partnership. In the clinic encounter these perspectives, along with the power differential between the actors and the organisational
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and legal setting, shape what is achievable. Parents, for example, may fulfil the role of ‘information gatherer’, ‘advisor’ or ‘negotiator’, in the same way as relatives accompanying elderly patients in Charles et al.’s (1997) study. Charles et al. suggest that the parties to the consultation may form ‘coalitions’. Such a concept may form a valuable basis for analysing the differing behaviours and outcomes of paediatric clinic encounters and for thinking about differences in relationship between sets of parents and children facing roughly the same treatment decisions. In any encounter involving three or more actors there is a tendency for two of them to enter a coalition in order to advance a personal agenda or achieve an agreed outcome. For example in a paediatric consultation, the desire of a parent to see some resolution to a child’s longstanding symptoms may result in a coalition between this parent and the doctor to pursue a particular form of treatment, regardless of the child’s own preferences. Alternatively, we can imagine encounters where the doctor forms a coalition with a child patient to resist pressure from a parent to follow a particular course of action, giving the child some time to come to their own decision. In these two examples different partnerships are formed; in the first case between the doctor and a parent, in the second between the doctor and child. In both cases the doctor plays the crucial role, suggesting that partnership may often be achieved without any reduction in medical power. Whatever the coalition, evidence of how they are managed by all those concerned should be at the centre of work on patient partnership in paediatrics. Without this, assumptions about the role of the child as a partner in his or her health care will remain unexamined. The responsibilities and agendas of parents and health care professionals, and whether these are in line with or against the outlook and preferences of the child, are clearly complex matters, and need careful consideration, both conceptually and empirically.
Methodological issues So far we have discussed different aspects of partnership and then suggested a framework for exploring the limits and possibilities for partnership with children in paediatric clinics. This framework incorporates factors outside and inside the clinical encounter. If we are to test the value of such a framework in relation to children, however, we need to confront the basic problem of how to go about conducting research with this particular social group. What special issues, if any, does researching children raise, and what special methods might be needed to establish the extent to which children are involved in making decisions about their healthcare?
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There is an increasing methodological literature concerning appropriate ways of conducting research with children on their affairs. This methodological literature represents a valuable resource both in eliciting children’s views on patient partnership and in looking at ways of working with children in paediatric settings to help create an ethos of partnership. There is some debate within the literature about the need for ‘innovative’ ways of enabling children to discuss aspects of their lives. One example is an enquiry by Hill, Laybourne and Borland (1996) into children’s emotions, involving a variety of approaches with different groups of respondents. Amongst the methods used were group discussion, character cards, pictorial vignettes and role-play. The authors acknowledge that some of the materials were drawn from those already developed for work with children by teachers and social workers, illustrating the value of a broad, crossdisciplinary approach to working with children. Harden, Scott, Backett-Milburn, and Jackson (2000) challenge the view that special methods, beyond conversational interviews, are necessary in engaging children in discussion about their own health affairs. The above authors provide, as part of their supporting evidence, a resume of some different assumptions about doing research with children which also have resonance for research into ‘doing partnership’ with children. One important part of their discussion concerns the issue also raised by James et al. (1998) about the pitfall of conceptualising the study of children’s lives as happening in an autonomous realm, away from adult influence. This is particularly pertinent in the context of healthrelated partnerships when, as we have seen, it has been quite possible for adults to discuss children’s bodies, ailments and treatment with minimal contribution from the child. A further point of note is James et al.’s suggestion that the use of elaborate research techniques presupposes the researcher’s ability to interpret the results of, for example drawing, photography or sentence completion. They do, however, suggest that such methods have a value in encounters with children, in providing alternatives to unstructured, conversationbased interviewing and, possibly, boredom. Whilst it is understandable that researchers may wish to avoid imposing any rigidity in questioning or communicating with children, alternative methods such as drawing or the discussion of vignettes may well be of value with children (and indeed with people of other ages) (Morgan, Gibbs, Maxwell, & Britten, 2002). The deciding factor here would seem to be that the methods should serve rather than drive the research and provide real and acceptable alternative means of communication. For example, it is possible to use charts as means for children to review their participation in decision making in the clinic. The interview might begin with a free ranging conversation about the child’s experience of
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health care. The empty chart is then introduced as a means for organising some of the material in these conversations. Through identifying decisions and apportioning responsibility for decision making to those the child identifies as being involved in their health care, each child is able to produce a readily understandable pictorial representation of the experience and views covered during the interview. As well as considering different techniques for enabling children to discuss aspects of their lives, (drawing, writing, prompt cards and other structured activities) Mauthner (1997) also draws attention to two factors that may prove very relevant in examining the views of children about health partnership. The use of small group, rather than individual discussions about the subject under research seems to counteract the adult–child power imbalance and encourage children to talk more freely. The possibility of enabling children to participate in setting the agenda for interviews also ensures that children are interested in and able to contribute to discussions. In the clinical setting, the first of these is perhaps difficult for reasons of confidentiality. Enabling children to nominate some of the sites for conversation is not, however, out of the question— although within a strictly time-controlled environment it might be discouraged. The reflexive nature of much of this methodological literature is also of value since it engages the reader in ongoing discussion about aspects of working with children. This covers ethical as well as practical considerations. Because of the determination to engage children on their own terms and in settings other than the clinic, there is a particular focus on enabling and facilitating participation, and minimising (or at least sensitising the researcher to the presence of) power differentials between adult and child.
Conclusion In this paper we have considered ideas surrounding partnership in health and noted the general lack of consideration given to children. Whilst existing approaches highlight some of the dimensions of partnership they fail to provide an adequate basis for understanding the constraints and opportunities for partnership in paediatric clinics. Our paper offers a framework for exploring partnership, focusing on three elements: (i) the significance of the organisational and legal setting; (ii) the perspectives that the different parties bring to the clinical encounter; and (iii) the kinds of coalition that might be formed between parent, child and doctor who make up the triad in paediatric clinics. We have also considered briefly a range of methods that can be employed to explore children’s perceptions of their involvement in partnership, especially the use of
decision-making charts, and the need to employ these methods away from the clinic if we are to understand fully these perceptions. We have argued in the paper that accomplishing partnership is not a straightforward matter. For example, parents’ views about whether children should be responsible for health maintenance and doctors’ assumptions about the age of children’s competence are likely to inform the development of partnership coalitions, as are children’s own preferences. In our view accomplishing partnership is in practice contingent and negotiable in light of the setting, the nature, duration and seriousness of the patient’s illness, the mundaneness of the decision and the differences in power between the parties. As such it cannot be reduced to doctors moving between three models of decision-making—paternalistic, informed or shared—depending on the patient’s preference, as Charles et al. (1999a) suggest. Developing partnership in health care inevitably involves an alteration in the power imbalance that has traditionally characterised medicine, especially paediatric medicine, as well as that between parent and child. The willingness of doctors to cede some of this power and the willingness of patients and parents to increase their level of participation and responsibility for their care is a matter requiring empirical investigation. For researchers, paediatric care provides an important site for the exploration of these dynamics and their contextual character. Variations in response of these participants with regard to paediatric care permit the examination of core social relationships as well as the processes and outcomes in health-care delivery. While partnership may be beneficial to children it should not be assumed that this is always the case. Some children may not feel well enough or may simply not want to make informed decisions about their health care and may prefer to depend on others. In certain circumstances child patients may wish health-care professionals to take responsibility for a situation that may be proving impossible to cope with. The framework offered here does not make a priori judgements about the suitability or otherwise of partnerships, but suggests that in any situation, especially in paediatrics, specific contextual and interactional factors will be at work in either constraining or fostering them. The formation of coalitions is of particular note in shaping partnerships as they develop, and, we would argue, needs to be developed further in future work on patient partnerships in paediatrics.
Acknowledgements We should like to thank Mildred Blaxter and the three anonymous referees of the journal for their comments on previous drafts of this paper.
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References Alderson, P. (1993). Children’s consent to surgery. Milton Keynes: Open University Press. Almarsdottir, A., & Zimmer, C. (1998). Children’s knowledge about medicines. Childhood, 5, 265–281. Backett, K., & Alexander, A. (1991). Talking to young children about health. Health Education Journal, 50, 34–38. Bendelow, G., & Brady, G. (2002). Experiences of ADHD: Children, health research and emotion work. In G. Bendelow, M. Carpenter, C. Vautier, & S. Williams, (Eds.), Gender, health and healing: The public/private divide. London: Routledge. Bendelow, G., & Oakley, A. (1993). Beliefs about cancer in children and young people. SSRU and Women’s Nationwide Cancer Control Campaign, University of London. Brook, G. (2000). Children’s competency to consent: A framework for practice. Paediatric Nursing, 12, 31–35. Byrne, P. S., & Long, B. L. (1976). Doctors talking to patients. London: HMSO. Calnan, M., & Gabe, J. (2001). From consumerism to partnership? Britain’s NHS at the turn of the century. International Journal of Health Services, 31, 119–131. Charles, C., Gafni, A., & Whelan, T. (1997). Shared decisionmaking in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science & Medicine, 44, 681–692. Charles, C., Gafni, A., & Whelan, T. (1999a). Decision-making in the physician–patient encounter: Revisiting the shared treatment decision-making model. Social Science & Medicine, 49, 651–661. Charles, C., Gafni, A., & Whelan, T. (2000). How to improve communication between doctors and patients. British Medical Journal, 320, 1220–1221. Charles, C., Redko, C., Whelan, T., Gafni, A., & Reyno, L. (1998). Doing nothing is no choice: Lay constructions of treatment decision-making among women with early-stage breast cancer. Sociology of Health and Illness, 20, 71–95. Charles, C., Whelan, T., & Gafni, A. (1999b). What do we mean by partnership in making decisions about treatment? British Medical Journal, 319, 780–782. Coulter, A. (1999). Paternalism or partnership. British Medical Journal, 319, 719–720. Coulter, A. (2002). The autonomous patient: Ending paternalism in medical care. London: The Nuffield Trust. Department of Health (1999). Public Involvement in the New NHS. Circular HSC 1999/210. Dingwall, R. (1994). Litigation and the threat to medicine. In J. Gabe, D. Kelleher, & G. Williams (Eds.), Challenging medicine. London: Routledge. Dixon Woods, M., Young, B., & Heney, D. (1999,). Partnerships with children. British Medical Journal, 319, 778–780. Donaldson, M. (1978). Children’s minds. Glasgow: Fontana. Freidson, E. (1970). Profession of medicine: A study of the sociology of applied knowledge. Chicago: University of Chicago Press. Gafni, A., Charles, C., & Whelan, T. (1998). The physician– patient encounter: The physician as a perfect agent for the
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patient versus the informed treatment decision-making model. Social Science & Medicine, 47, 347–354. Harden, J., Scott, S., Backett-Milburn, K., & Jackson, S. (2000). Can’t talk, won’t talk? Methodological issues in researching children. Sociological Research On-Line, 5. Hart, C., & Chesson, R. (1998). Patient participation in decision making. British Medical Journal, 316, 1600–1603. Hill, M., Laybourne, A., & Borland, M. (1996). Engaging with primary aged children about their emotions and well-being: Methodological considerations. Children and Society, 10, 129–144. Hill, M., & Tisdall, K. (1997). Children and society. Harlow: Longman. James, A., Jenks, C., & Prout, A. (1998). Theorising childhood. Cambridge: Polity Press. James, A., & Prout, A. (1996). Strategies and structures: Towards a new perspective on children’s experiences of family life. In J. Brannen & M. O’Brien (Eds.), Children in families: Research and policy. London: Falmer Press. Mauthner, M. (1997). Methodological aspects of collecting data from children. Childhood and Society, 11, 16–28. Mayall, B. (1993). Keeping healthy at home and school: It’s my body so it’s my job. Sociology of Health and Illness, 15, 464–487. Mayall, B. (1996). Children health and the social order. Buckingham: Open University Press. Morgan, M., Gibbs, S., Maxwell, K., & Britten, N. (2002). Hearing children’s voices: Methodological issues in conducting focus groups with children aged 7–11 years. Qualitative Research, 2, 5–20. Oakley, A., Bendelow, G., Barnes, J., Buchanan, M., & Hussain, O. (1995). Health and cancer prevention: Knowledge and beliefs of children and young children. British Medical Journal, 310, 1029–1033. Secker, J., Armstrong, C., & Hill, M. (1999). Young people’s understanding of mental illness. Health Education Research, 14, 729–739. Silverman, D. (1987). Communication and medical practice. London: Sage. Strong, P. M. (1979). The ceremonial order of the clinic. London: Routledge and Kegan Paul. Tates, K., & Meeuwesen, L. (2001). Doctor–parent–child communication A (re)view of the literature. Social Science & Medicine, 52, 839–885. Thomas, N., & O’Kane, C. (1999). Experiences of decision making in middle childhood. Childhood, 6, 369–387. Tuckett, D., Boulton, M., Olson, C., & Williams, A. (1985). Meetings between experts. London: Tavistock. United Nations. (1989). Convention on the rights of the child 1989. Geneva. UN. West, P. (1976) The physician and the management of childhood epilepsy. In M. Wadsworth & D. Robinson (Eds.), Studies in everyday medical life. London: Martin Robertson. Young, B., Dixon Woods, M., Windridge, K. C., & Heney, D. (2003). Managing communication with young people who have a potentially life threatening chronic illness: Qualitative study of patients and parents. British Medical Journal, 326, 305–310.
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‘It takes three to tango’: a framework for understanding patient partnership in paediatric clinics Jonathan Gabea,*, Gillian Olumideb, Michael Burya b
a Department of Social and Political Science, Royal Holloway, University of London, Egham TW20 0EX, UK Centre for Health Economics and Policy Studies, University of Wales Swansea, Singleton Park, Swansea SA2 8PP, UK
Abstract Since the late 1990s, the term ‘partnership’ has increasingly been inserted into the literature and rhetoric of the UK healthcare system. In this paper, the assumptions and implications surrounding the usage of the term in relation to doctor–patient interaction are examined in the context of paediatric services. The paper considers recent ideas about partnership in medical encounters, especially those of Charles et al., and the extent to which they are applicable to children. The paper then goes on to develop a framework for understanding patient-partnership issues. It is argued that any investigation of partnership will need to take account of the organisational and legal setting, as well as the beliefs and agendas that all parties bring to the medical encounter. In the context of paediatrics, the perspectives of three actors—the child, parent and health service professional—need to be explored. Our framework allows for different sorts of ‘coalition’ to develop between these actors as they try to reconcile their perspectives in the clinic and offers a situationally contextualised view of partnership. We also argue that these matters require study outside as well as inside the clinic, through the use of a range of methods, including those that help children at home review their involvement in decision making in the clinic. r 2004 Elsevier Ltd. All rights reserved. Keywords: Paediatrics; Patient partnership; Doctor–patient interaction; UK
Introduction The notion of partnership between patients and their doctors has increasingly been advocated in health policy circles in the UK in recent times and is now a key element of the present Labour government’s modernisation agenda. It seems to be assumed that it is equally relevant to all patient groups and that its desirability should be accepted as a matter of course. Yet little is known about the relevance and practicality of achieving partnership in health care. In particular, little attention has been given to the differing age groups, including children, who may be involved in health-care partnerships, and what this might mean for routine clinical encounters. This paper sets out a framework for developing empirical work to explore *Corresponding author. Tel.: +44-1784-434375; fax: +441784-443144. E-mail address: [email protected] (J. Gabe).
assumptions about partnership in health care, especially in the context of paediatrics. The paper starts by outlining the basic ideas involved in partnership that have been advocated in policy and academic circles in the UK in recent years and then considers their applicability to children. The work of Charles et al. on decision making and partnership is given particular attention as it provides some useful suggestions for developing a framework for analysis. However, we take a broader view of partnership which goes beyond decision making in the clinic. Several steps are then taken in developing our own framework for analysis. First, it is argued that the potential for partnership between child patients and their doctors is shaped by the organisational and legal setting that creates boundaries for the consultation. This may either promote or restrict the fostering of partnership in health care. Second, the differing perspectives that the three parties involved—child, doctor and
0277-9536/$ - see front matter r 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2003.09.035
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parent—bring to the clinical encounter are considered. Clearly, partnership involves at least a degree of agreement, or at least mutual respect for the different ‘agendas’ that each may have. The process of reconciling these agendas is likely to influence the dynamics of the triadic relationship in the consulting room and the coalitions that might be generated. The idea of coalitions in the face-to-face consultation forms the third part of the framework. This approach to analysing partnership in paediatrics, and whether it is accomplished between child patient, parent and doctor, is thus contingent on paying attention to a number of contextual and interactional factors that need to be established empirically. Partnership may be achieved (or not) as the result of factors outside of the consultation and the dynamics of interactions inside it. The methodological issues involved in understanding the process of accomplishing partnership with children are explored in the final section.
Ideas about partnership The details of what partnership is and what it involves are still under negotiation, but this has not stopped it becoming a vogue word in UK policy circles. The Department of Health (1999), for example, has suggested in its circular ‘Public Involvement in the New NHS’, that it involves at least four elements. First, it is noted that people want more information about their health and illness, and they want it contextualised to their particular circumstances. Second, it is suggested that National Health Service (NHS) staff need to listen to health service users in order to provide more relevant and responsive services. Third, transparency and accountability are advanced as desirable aims that can only be properly pursued if patients are seen as partners in care. Fourth, it is posited that the involvement of patients in their care increases patient satisfaction with health services in general, and at the point of delivery. Clearly, partnership may involve all or some of these features, or indeed others, particularly with regard to shared decision making. The recent development in Britain of a National Service Framework for children ties in some of these features in an attempt to raise national standards of care. Whatever its content, however, partnership has superseded an earlier model of patient involvement based on consumerism, patients’ charters and the need for the health service to be responsive to knowledgeable individuals who shop around for their health care (Calnan & Gabe, 2001). For academic commentators partnership has been placed in opposition to a long-standing ‘paternalism’ in health care. For example, Coulter (1999), in a British Medical Journal editorial, makes strong and clear statements about the nature of partnership. Overall,
she sees the main components of partnership as involving the establishment of common goals, the recognition of mutual respect, the absence of hierarchy, and the sharing of decision-making between patients and their doctors (see, also, Coulter, 2002). In a series of conceptual and empirical papers, Charles, Gafni, and Whelan (1999a) also engage with the question of what partnership in decision making might involve, having developed the view (Charles, Gafni, & Whelan, 1997; Charles, Redko, Whelan, Gafni, & Reyno, 1998; Charles, Gafni, & Whelan, 1999b; Charles, Gafni, & Whelan, 2000) that shared decision making and the exchange of information between patient and physician will feature strongly in the discussion of partnership—the latter being a prerequisite of the former. They suggest three theoretical models for conceptualising the physician–patient encounter in the recent history of developed countries: the paternalistic model (doctor makes treatment decisions and patient accedes); the informed model (doctor lays out treatment possibilities and the patient makes the decision); and the shared model (doctor and patient interact throughout the decision making process). The last two of these models (discussed and contrasted in Gafni, Charles, & Whelan, 1998) may well imply the necessity for extra resources (in time allocated for consultation and possibly in other areas such as the development of aids to understanding and communication)—an argument, or claim, that is expressed by practitioners in a variety of specialisms and by patient groups. The middle option— the informed model—certainly implies a shift of responsibility to the patient. These authors suggest that partnership becomes more pressing with the seriousness of the condition and the complexity of treatment options, though individual patients may well wish the doctor to take control at some points in an illness trajectory, especially where the condition is life threatening. Charles et al. (1999a) acknowledge, in this connection, that doctor–patient encounters are likely to move between components of these ideal types. As it is patients who will live with the results of decisions, it seems reasonable that their preferences should be incorporated into treatment plans. However, the re-orientation towards partnership has been primarily a ‘top down’ change rather than a response to ‘bottom up’ pressures from patients. Indeed, existing research casts doubt over whether patients are ready and willing to take on increased decision making responsibilities (Calnan & Gabe, 2001) and it is even less clear whether this is so of specific patient groups, such as children. We therefore turn next, in developing our own framework for analysis, to consider the factors involved in accomplishing partnership with this patient group. We suggest that the opportunity for partnership in paediatrics is framed, first and foremost, by the organisational and legal setting of the hospital clinic.
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The organisational and legal setting It has long been recognised that formal relationships in health-care organisations, and their legal underpinnings (Dingwall, 1994), establish the boundaries for legitimate behaviour and influence the content of social interaction, independently of the characteristics and perspectives of the individual participants (Freidson, 1970). Strong (1979) took this as the starting point for his comparative study of paediatric clinics in the UK and USA. He found that while there was a certain continuity between the publicly funded NHS clinic in the UK and the fee-for-service US clinic (in terms of the technical dominance of the doctor and a politeness ethic where the moral worth of the patient was not questioned) there were also important differences that had a bearing on social interaction. Of particular relevance to the issue of partnership was the impact of the bureaucratic format on the NHS clinic, which offered a standard, somewhat impersonal approach with a minimum of choice. This format was also reflected in the nature of the physical setting in which doctor and patient met and the way care was organised. Many NHS clinics, including paediatric ones, are currently housed in functional rooms with little sign of comfort or personalised touches. As Silverman puts it, in his study of NHS and private paediatric clinics, the NHS ‘territory’ is usually one characterised by ‘unadorned white walls, no carpets, simple furniture y heating pipes and radiators are very obtrusive’ (Silverman, 1987: 114). By contrast, ‘to enter the consulting rooms of the private clinic is to enter a different world’ (Silverman, 1987). Here, the physical setting is characterised by good quality carpeting and furniture, comfortable chairs and the presence of such adornments as pot plants. This approach to the territory links well with the nonbureaucratic format and privacy that the private clinic affords patients. Appointments are longer and arranged to suit the patient’s convenience. The doctor is not interrupted by others, provides personalised continuity of care and a personalised service, exemplified for Silverman by the fact that the doctors he observed stood up and shook the hands of the patient and their relatives at the beginning and end of each consultation, and even helped patients on with their coats (Silverman, 1987: 121). The more bureaucratic format of the NHS clinic, and its physical embodiment in often poor standard accommodation, is also reflected in the way patients are managed. Thus, they are likely to be given tight time slots and pressurised to attend on time or meet professional opprobrium, though they may have long waiting times themselves at the clinic once there. They may not be seen by the same doctor as in previous clinic visits, and may well have their consultation with the doctor interrupted by others coming into the room. As
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Silverman noted in his study, the NHS clinic is often characterised by the coming and going of students, junior doctors, nurses and other personnel, whether or not patients are seeing the doctor in question at the time (Silverman, 1987: 114). The point of note here is that the bureaucratic and physical setting of clinics needs to be seen as part of the context in which patient involvement in decision making occurs, and thus part of any framework that sets out to analyse issues linked to partnership. The questions at issue then become to what extent the clinic demonstrates to the patient and family that they are simply part of a bureaucratic setting, and whether this affects the ability to achieve partnership as and when the doctor, patient and family members meet? In the case of paediatrics, as in other spheres of medicine, the legal context is also important. Two legal documents are particularly relevant to the framing of attempts to achieve partnership. The first is the United Nations Convention on the Rights of the Child, which was approved by the UN in 1989 and ratified by the UK in 1991 (Hill & Tisdall, 1997). The Convention defines childhood as ending at the age of 18 (whereas the NHS uses the age of 16) and suggests that ‘the child, by virtue of his (sic) physical and mental immaturity, needs special safeguards and care, including appropriate legal protection, before as well as after birth’ (taken from the Preamble of the 1959 Declaration of the Right of the Child—UN Document A/4354 1959: 2). Article 5 of the Convention affirms support for the ‘rights, responsibilities and duties’ of parents, extended family or community (as dictated by local custom) or for whatever legal arrangements are in place for the custody of the child. It is Article 12, which speaks of the child’s right to form and express his/her own views, that tends to interest and motivate those working from a ‘children’s rights’ perspective (see, for example, the editorial of Childhood 6(4) 1999). In this Article, there is an acknowledgement that the child’s views will be ‘given due weight in accordance with the age and maturity of the child’ (UN Convention, 1989. Article 12: 1). This Convention seems both to discourage and encourage doctors to develop partnership with children. On the one hand children are seen as immature and in need of protection; on the other they have a right to be heard. In a similar way, the UK Children Act 1989 places a duty on local authorities, in the discharge of their duties towards children needing to be accommodated, both to discover and to take account of the child’s views about accommodation (Article 20) and more general matters (Article 22). Again this is to be undertaken ‘having due regard to his (sic) age and understanding’. A second legal frame is provided by a legal ruling with regard to what has come to be known as ‘Gillick competence’ (after Victoria Gillick’s failed case against Norfolk Area Health Authority in 1985, concerning her 16 year old daughter’s prescription for the contraceptive
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pill). This ruling is explained by Brook (2000) in the following way:
*
Gillick competence is therefore judged to be achieved when: a minor, in the opinion of the treating doctor, has ‘sufficient understanding and intelligence to understand fully what is proposed’, (is) ‘capable of making a reasonable assessment of the advantages and disadvantages of the proposed treatment’ and (has) ‘sufficient discretionyto make a wise choice in his or her own interests.’ Though the Gillick case dealt with contraception, ‘Gillick competence’ is applied to other types of medical care. (p. 33)
This legal principle more clearly encourages doctors to involve children in decision making about their health care, but gives them the discretion to judge for themselves whether a particular child is ‘competent’ to become a ‘partner’ in such decision making, to the extent of potentially overriding ‘parental responsibility’. The legal context thus both constrains and encourages paediatricians to develop a partnership with child patients. The empirical questions, which flow from this part of our framework, are therefore to what degree are organisations and health-care professionals aware of or are affected by the legal considerations that apply at any given point, and how might these affect the arrangements and management of patientprofessional contacts, especially the extent to which the child patient’s interests are balanced against parental views?
Participants in the paediatric consultation Moving from the organisational and legal setting to that of the consultation itself, the assessment of the opportunities for partnership with children is the realisation that shared decision making in the paediatric consultation may well be between more than the physician and patient, as noted above (see also Dixon Woods, Young, & Heney, 1999). As Charles et al. (1997: 285) acknowledge in relation to another patient group to which this also applies—the elderly— decisions in health care may well involve and have an impact on the carers and family as well as the patient. Clearly, in paediatrics, at least one parent is likely to be present at the consultation as well the child and their doctor, yet few studies of doctor–child–parent communication have taken the triadic nature of this communication into account, focusing instead on either paediatrician–child or (most usually) paediatrician– parent interaction (Tates & Meeuwesen, 2001). Tates and Meeuwesen therefore suggest that a plural perspective is required that takes account of the three actors in
the medical encounter and the additional complexities this can cause. Such triadic encounters are likely to generate differences of opinion, if not more major rifts, as the parties concerned may have their own agendas or standpoints that bear on their behaviour. Opportunities for partnership in paediatrics are thus shaped by the perspectives of the different actors and their power to influence the outcome of the consultation. Below we consider the viewpoints of parents, doctor and child and what bearing these may have on accomplishing partnership. The parent’s perspective Traditionally parents have had a powerful influence on children and their opportunity to express their own views about the care they wish to receive. Sociological research in the 1970s and 1980s revealed that parents and doctors tended to discuss the child’s illness without seeking to include the child’s own point of view (Silverman, 1987; Strong, 1979; West, 1976). For example, Strong found a clear unwillingness to admit the child to any relationship of equality or partnership, and parents in his study seemed to accept this arrangement. Possibly such parents felt disadvantaged in terms of the power differential they experienced with their doctors, but, like many adult patients at this time, were willing for the doctor to set the agenda. In West’s study, while the child remained passive over the course of a series of consultations, the parents became increasingly active participants as they became more knowledgeable about the condition. Rhetoric about the place of children in health care has certainly evolved since these studies were completed, and parents may now be more willing to encourage their children to participate in paediatric consultations. Whether this is so is an empirical question that has yet fully to be addressed. One recent interview-based study of young people with a potentially life threatening chronic illness and their parents, attending a paediatric oncology clinic, suggests that parents often still act in an executive-like capacity, managing what and how their children are told about their illness, especially at the time of diagnosis (Young, Dixon Woods, Windridge, & Heney, 2003). Observational research and studies involving children and young people with non-lifethreatening chronic conditions need to be undertaken to confirm this finding. In the meantime we can note James and Prout’s (1996) discussion of variations in family life and the consequences of such variability for children’s perspectives on social action: y within these different kinds of families there will be a range of diverse cosmologies shaping the day to day flow of family life: families which place high premiums on discipline and punishment at one
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extreme end and, at the other, those whose lack of hierarchical order is more reminiscent of the swinging 1960s than the back to basics 1990s. The experiences of family life of children from these very different kinds of home environments would, we suggest, again be quite dissimilar and permit children access to very different perspectives on social action with ramifications beyond the family environment. (p. 47) Such variability in parental views is likely to be reflected in the division of labour with regard to health work at home (Mayall, 1993). The extent to which children are encouraged by their parents to take responsibility for health maintenance tasks, or the taking of medicines as prescribed, will in turn have a bearing on the nature of the paediatric encounter, the extent to which the parent seeks to speak on behalf of the child, the child’s willingness to take an active part in the consultation and their subsequent compliance with whatever is decided. The doctor’s agenda While a significant number of general practitioners have long accepted the need to treat the patient as expert and involve them in decisions about their health care (Byrne & Long, 1976; Tuckett, Boulton, Olson, & Williams, 1985) paediatric consultants have been slower to move towards such a view. One reason for this is that these doctors have traditionally seen child patients as ‘incompetent’ and thus of subordinate status in the paediatric clinic. According to Strong (1979), such a viewpoint has been endorsed by parents, giving doctors carte blanche to exclude their children from the decision making process. As he puts it: y. children’s incompetence and subordinate status, when coupled with their acceptance of that status and its sustained enforcement by adults, meant that they could readily be excluded from large areas of interaction and that consultations could take place principally between staff and children’s adult representatives. (p. 199) The reference to ‘incompetence’ in the above quotation in turn relates to assumptions that paediatricians are said to hold about children’s immaturity and inadequacy of self-expression. They believe that children only become competent to comprehend and comply with adult-directed medical discourse with age. For example, Silverman (1987) notes, in discussing the transfer of responsibility of the child’s diabetes from parent to child, that doctors assume that: ythe parents—usually the mother—will be centrally involved up to the age of, say, ten. However, as the child enters her teens, she is treated quite openly as
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the person to whom medical encounters are directed and the person who should be making the decisions regarding her health care. (p. 211). This may well be the way ‘rule of thumb’ behaviour develops in paediatric medicine, and beyond, with an assumption that a particular child will eventually be sufficiently advanced to comprehend and comply with adult-directed medical discourse. The relationship of chronological age to a perceived ‘age of competence’ may be fluid, with the assessment of competence resting in the hands of the doctor. If necessary, their decision may override a parental wish about treatment, thus demonstrating the ultimate authority of the doctor in resolving any conflicts of interest that may occur. Realistic decision making, whether mundane or more exceptional, implies information upon which decisions may rest. It is in this area that assessments of competence become problematic. Is it a matter of whether the child is competent or incompetent to make decisions that is the sole issue here, or is the nature of the explanation of choices offered by the doctor also part of the equation? If a patient (of any age) does not understand treatment choices, is it the fault of the patient for lacking competence or is there a responsibility for achieving comprehension on the part of the ‘expert’? Donaldson (1978), querying Piagetian assumptions about the reasoning ability of very young children, shows that the nature of a task and the explanation of a task influence considerably a young child’s ability to perform the task in question. Furthermore, the child may be considered incompetent in adult judgement simply because the adult does not have the skill and perception to communicate the requirements to the child. This question of professional competence rather than that of the child may become a key concept when developing partnership in paediatric settings. In assessing competence to participate in medical decision making, it may be prudent, therefore, to enquire ‘whose competence?’ The quality of explanation must certainly count alongside assessment of a child’s understanding; a point underlined by Hart and Chesson (1998) who suggest, on the basis of existing evidence, that children’s perceptions of illness and treatment may be at some variance from those of parents and health carers. This argument depicts children as ‘consumers’ who are ill-served by existing arrangements for eliciting their preferences in health care. The authors highlight the importance of seeking methods of communication and expression of relevance to the child, and conclude: Healthcare professionals will not be able to allay children’s fears and respond to their needs unless they are prepared to develop effective means by which children can communicate with them. Seeking children’s views appropriately is important not only
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for the individual child and his or her family but also for the future of the NHS. Consumer participation is a prerequisite in bargaining assertively for quality health care (p. 1603). In sum, doctors’ assumptions about the age of children’s competence and their own competence to explain the treatment options available to child patients can both influence the potential for partnership in paediatric consultations. But how do children themselves feel about being partners in their health care? We turn to their perspective next. The child’s standpoint Recent social scientific writing on children has challenged the deficit model of the child as someone who is lacking in competence and adequacy of selfexpression and has focused instead on what children can do (Mayall, 1996; James, Jenks, & Prout, 1998). Those working from within this framework, sometimes called ‘new childhood studies’, argue that children are social actors who participate in the social world and whose knowledge and experience are worthwhile for their own sake and for the insights they offer into the condition of childhood. They therefore emphasise the desirability of canvassing the points of view of children and involving them in plans and fact finding about issues of interest and concern. Children’s knowledge of the state of childhood is found to be essential to the realistic planning of services for children. There are now a number of studies that have begun to canvass directly the views and knowledge of children on health matters (for example Almarsdottir & Zimmer, 1998; Backett & Alexander, 1991; Bendelow & Oakley, 1993; Mauthner, 1997; Mayall, 1996; Oakley, Bendelow, Barnes, Buchanan, & Hussain, 1995; Secker, Armstrong, & Hill, 1999). Secker et al., for example, examine the views of groups of teenagers about mental illness. Their findings, it is claimed, are of value to health promotion units seeking to address negative stereotypes of mental illness, as well as being interesting in their own right as providing an insight into the ‘lay’ construction of meaning and causes of mental illness. The study by Oakley et al. investigates awareness and knowledge about cancer and cancer prevention in two groups (15– 16 and 9–10 years of age). Again this is valuable as a planning resource for health education as it highlights the ways in which knowledge is acquired and deployed within these age ranges and to whom responsibility for health-maintenance is attributed. What children think of becoming partners in their health care remains almost unexplored, although there are some studies of supported decision making in health and social care (e.g. Alderson, 1993; Brook, 2000; Thomas & O’Kane, 1999) and a recent study of
managing communication with young people about cancer (Young et al., 2003). These studies tend to focus on fairly serious and dramatic situations (such as children facing life-threatening conditions and major surgery or children living apart from their families) rather than routine medical treatment settings. However, the Thomas and O’Kane study, although concerned with participation in decision making by 8–12year-old children who are looked after by local authorities in England and Wales, is of relevance to understanding child participation more generally. The authors find, as with Mayall (1996), that the structures (or conceptualisations of children by adults) within which children act have great bearing on the child’s ability and opportunity to participate in decisionmaking. Likewise, the study by Young et al. (2003) found that parents’ desire to protect their child’s well being shaped their child’s opportunity to participate in consultations. Most of the young people in this study saw themselves as occupying a marginal position in consultations, without direct access to information about their condition. Also of interest is Bendelow and Brady’s (2002) investigation of children’s and parents’ accounts of compliance over taking Ritalin to address ADHD. They note that children (and parents) in their encounters with health professionals were aware that their view was not perceived to be as important as that of the ‘expert’. As they remark, current health service rhetoric says that parent/patients are now in partnership with professionals, yet it was clearly not the case that the children in their study were equal in this relationship. (p. 174) Bendelow and Brady’s study, like many of the recent studies of children, highlights the extent to which relations of power are of importance in understanding childhood experience. Whilst adult and professional power can be shown to have a bearing on children’s experience, as highlighted by the number of utterances by each party in the paediatric consultation, it would be quite wrong to suggest that children cannot and do not exercise their autonomy or ‘countervailing power’ in a variety of ways and for very different reasons. This must be borne in mind when analysing the behaviour of children in relation to the clinic and to the acceptance of suggested treatments.
It takes three to tango in paediatrics The above discussion of the perspectives of parent, doctor and child highlight the ways in which each actor in the paediatric consultation brings certain assumptions and experiences to the consultation which have a bearing on the accomplishment of partnership. In the clinic encounter these perspectives, along with the power differential between the actors and the organisational
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and legal setting, shape what is achievable. Parents, for example, may fulfil the role of ‘information gatherer’, ‘advisor’ or ‘negotiator’, in the same way as relatives accompanying elderly patients in Charles et al.’s (1997) study. Charles et al. suggest that the parties to the consultation may form ‘coalitions’. Such a concept may form a valuable basis for analysing the differing behaviours and outcomes of paediatric clinic encounters and for thinking about differences in relationship between sets of parents and children facing roughly the same treatment decisions. In any encounter involving three or more actors there is a tendency for two of them to enter a coalition in order to advance a personal agenda or achieve an agreed outcome. For example in a paediatric consultation, the desire of a parent to see some resolution to a child’s longstanding symptoms may result in a coalition between this parent and the doctor to pursue a particular form of treatment, regardless of the child’s own preferences. Alternatively, we can imagine encounters where the doctor forms a coalition with a child patient to resist pressure from a parent to follow a particular course of action, giving the child some time to come to their own decision. In these two examples different partnerships are formed; in the first case between the doctor and a parent, in the second between the doctor and child. In both cases the doctor plays the crucial role, suggesting that partnership may often be achieved without any reduction in medical power. Whatever the coalition, evidence of how they are managed by all those concerned should be at the centre of work on patient partnership in paediatrics. Without this, assumptions about the role of the child as a partner in his or her health care will remain unexamined. The responsibilities and agendas of parents and health care professionals, and whether these are in line with or against the outlook and preferences of the child, are clearly complex matters, and need careful consideration, both conceptually and empirically.
Methodological issues So far we have discussed different aspects of partnership and then suggested a framework for exploring the limits and possibilities for partnership with children in paediatric clinics. This framework incorporates factors outside and inside the clinical encounter. If we are to test the value of such a framework in relation to children, however, we need to confront the basic problem of how to go about conducting research with this particular social group. What special issues, if any, does researching children raise, and what special methods might be needed to establish the extent to which children are involved in making decisions about their healthcare?
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There is an increasing methodological literature concerning appropriate ways of conducting research with children on their affairs. This methodological literature represents a valuable resource both in eliciting children’s views on patient partnership and in looking at ways of working with children in paediatric settings to help create an ethos of partnership. There is some debate within the literature about the need for ‘innovative’ ways of enabling children to discuss aspects of their lives. One example is an enquiry by Hill, Laybourne and Borland (1996) into children’s emotions, involving a variety of approaches with different groups of respondents. Amongst the methods used were group discussion, character cards, pictorial vignettes and role-play. The authors acknowledge that some of the materials were drawn from those already developed for work with children by teachers and social workers, illustrating the value of a broad, crossdisciplinary approach to working with children. Harden, Scott, Backett-Milburn, and Jackson (2000) challenge the view that special methods, beyond conversational interviews, are necessary in engaging children in discussion about their own health affairs. The above authors provide, as part of their supporting evidence, a resume of some different assumptions about doing research with children which also have resonance for research into ‘doing partnership’ with children. One important part of their discussion concerns the issue also raised by James et al. (1998) about the pitfall of conceptualising the study of children’s lives as happening in an autonomous realm, away from adult influence. This is particularly pertinent in the context of healthrelated partnerships when, as we have seen, it has been quite possible for adults to discuss children’s bodies, ailments and treatment with minimal contribution from the child. A further point of note is James et al.’s suggestion that the use of elaborate research techniques presupposes the researcher’s ability to interpret the results of, for example drawing, photography or sentence completion. They do, however, suggest that such methods have a value in encounters with children, in providing alternatives to unstructured, conversationbased interviewing and, possibly, boredom. Whilst it is understandable that researchers may wish to avoid imposing any rigidity in questioning or communicating with children, alternative methods such as drawing or the discussion of vignettes may well be of value with children (and indeed with people of other ages) (Morgan, Gibbs, Maxwell, & Britten, 2002). The deciding factor here would seem to be that the methods should serve rather than drive the research and provide real and acceptable alternative means of communication. For example, it is possible to use charts as means for children to review their participation in decision making in the clinic. The interview might begin with a free ranging conversation about the child’s experience of
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health care. The empty chart is then introduced as a means for organising some of the material in these conversations. Through identifying decisions and apportioning responsibility for decision making to those the child identifies as being involved in their health care, each child is able to produce a readily understandable pictorial representation of the experience and views covered during the interview. As well as considering different techniques for enabling children to discuss aspects of their lives, (drawing, writing, prompt cards and other structured activities) Mauthner (1997) also draws attention to two factors that may prove very relevant in examining the views of children about health partnership. The use of small group, rather than individual discussions about the subject under research seems to counteract the adult–child power imbalance and encourage children to talk more freely. The possibility of enabling children to participate in setting the agenda for interviews also ensures that children are interested in and able to contribute to discussions. In the clinical setting, the first of these is perhaps difficult for reasons of confidentiality. Enabling children to nominate some of the sites for conversation is not, however, out of the question— although within a strictly time-controlled environment it might be discouraged. The reflexive nature of much of this methodological literature is also of value since it engages the reader in ongoing discussion about aspects of working with children. This covers ethical as well as practical considerations. Because of the determination to engage children on their own terms and in settings other than the clinic, there is a particular focus on enabling and facilitating participation, and minimising (or at least sensitising the researcher to the presence of) power differentials between adult and child.
Conclusion In this paper we have considered ideas surrounding partnership in health and noted the general lack of consideration given to children. Whilst existing approaches highlight some of the dimensions of partnership they fail to provide an adequate basis for understanding the constraints and opportunities for partnership in paediatric clinics. Our paper offers a framework for exploring partnership, focusing on three elements: (i) the significance of the organisational and legal setting; (ii) the perspectives that the different parties bring to the clinical encounter; and (iii) the kinds of coalition that might be formed between parent, child and doctor who make up the triad in paediatric clinics. We have also considered briefly a range of methods that can be employed to explore children’s perceptions of their involvement in partnership, especially the use of
decision-making charts, and the need to employ these methods away from the clinic if we are to understand fully these perceptions. We have argued in the paper that accomplishing partnership is not a straightforward matter. For example, parents’ views about whether children should be responsible for health maintenance and doctors’ assumptions about the age of children’s competence are likely to inform the development of partnership coalitions, as are children’s own preferences. In our view accomplishing partnership is in practice contingent and negotiable in light of the setting, the nature, duration and seriousness of the patient’s illness, the mundaneness of the decision and the differences in power between the parties. As such it cannot be reduced to doctors moving between three models of decision-making—paternalistic, informed or shared—depending on the patient’s preference, as Charles et al. (1999a) suggest. Developing partnership in health care inevitably involves an alteration in the power imbalance that has traditionally characterised medicine, especially paediatric medicine, as well as that between parent and child. The willingness of doctors to cede some of this power and the willingness of patients and parents to increase their level of participation and responsibility for their care is a matter requiring empirical investigation. For researchers, paediatric care provides an important site for the exploration of these dynamics and their contextual character. Variations in response of these participants with regard to paediatric care permit the examination of core social relationships as well as the processes and outcomes in health-care delivery. While partnership may be beneficial to children it should not be assumed that this is always the case. Some children may not feel well enough or may simply not want to make informed decisions about their health care and may prefer to depend on others. In certain circumstances child patients may wish health-care professionals to take responsibility for a situation that may be proving impossible to cope with. The framework offered here does not make a priori judgements about the suitability or otherwise of partnerships, but suggests that in any situation, especially in paediatrics, specific contextual and interactional factors will be at work in either constraining or fostering them. The formation of coalitions is of particular note in shaping partnerships as they develop, and, we would argue, needs to be developed further in future work on patient partnerships in paediatrics.
Acknowledgements We should like to thank Mildred Blaxter and the three anonymous referees of the journal for their comments on previous drafts of this paper.
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References Alderson, P. (1993). Children’s consent to surgery. Milton Keynes: Open University Press. Almarsdottir, A., & Zimmer, C. (1998). Children’s knowledge about medicines. Childhood, 5, 265–281. Backett, K., & Alexander, A. (1991). Talking to young children about health. Health Education Journal, 50, 34–38. Bendelow, G., & Brady, G. (2002). Experiences of ADHD: Children, health research and emotion work. In G. Bendelow, M. Carpenter, C. Vautier, & S. Williams, (Eds.), Gender, health and healing: The public/private divide. London: Routledge. Bendelow, G., & Oakley, A. (1993). Beliefs about cancer in children and young people. SSRU and Women’s Nationwide Cancer Control Campaign, University of London. Brook, G. (2000). Children’s competency to consent: A framework for practice. Paediatric Nursing, 12, 31–35. Byrne, P. S., & Long, B. L. (1976). Doctors talking to patients. London: HMSO. Calnan, M., & Gabe, J. (2001). From consumerism to partnership? Britain’s NHS at the turn of the century. International Journal of Health Services, 31, 119–131. Charles, C., Gafni, A., & Whelan, T. (1997). Shared decisionmaking in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science & Medicine, 44, 681–692. Charles, C., Gafni, A., & Whelan, T. (1999a). Decision-making in the physician–patient encounter: Revisiting the shared treatment decision-making model. Social Science & Medicine, 49, 651–661. Charles, C., Gafni, A., & Whelan, T. (2000). How to improve communication between doctors and patients. British Medical Journal, 320, 1220–1221. Charles, C., Redko, C., Whelan, T., Gafni, A., & Reyno, L. (1998). Doing nothing is no choice: Lay constructions of treatment decision-making among women with early-stage breast cancer. Sociology of Health and Illness, 20, 71–95. Charles, C., Whelan, T., & Gafni, A. (1999b). What do we mean by partnership in making decisions about treatment? British Medical Journal, 319, 780–782. Coulter, A. (1999). Paternalism or partnership. British Medical Journal, 319, 719–720. Coulter, A. (2002). The autonomous patient: Ending paternalism in medical care. London: The Nuffield Trust. Department of Health (1999). Public Involvement in the New NHS. Circular HSC 1999/210. Dingwall, R. (1994). Litigation and the threat to medicine. In J. Gabe, D. Kelleher, & G. Williams (Eds.), Challenging medicine. London: Routledge. Dixon Woods, M., Young, B., & Heney, D. (1999,). Partnerships with children. British Medical Journal, 319, 778–780. Donaldson, M. (1978). Children’s minds. Glasgow: Fontana. Freidson, E. (1970). Profession of medicine: A study of the sociology of applied knowledge. Chicago: University of Chicago Press. Gafni, A., Charles, C., & Whelan, T. (1998). The physician– patient encounter: The physician as a perfect agent for the
1079
patient versus the informed treatment decision-making model. Social Science & Medicine, 47, 347–354. Harden, J., Scott, S., Backett-Milburn, K., & Jackson, S. (2000). Can’t talk, won’t talk? Methodological issues in researching children. Sociological Research On-Line, 5. Hart, C., & Chesson, R. (1998). Patient participation in decision making. British Medical Journal, 316, 1600–1603. Hill, M., Laybourne, A., & Borland, M. (1996). Engaging with primary aged children about their emotions and well-being: Methodological considerations. Children and Society, 10, 129–144. Hill, M., & Tisdall, K. (1997). Children and society. Harlow: Longman. James, A., Jenks, C., & Prout, A. (1998). Theorising childhood. Cambridge: Polity Press. James, A., & Prout, A. (1996). Strategies and structures: Towards a new perspective on children’s experiences of family life. In J. Brannen & M. O’Brien (Eds.), Children in families: Research and policy. London: Falmer Press. Mauthner, M. (1997). Methodological aspects of collecting data from children. Childhood and Society, 11, 16–28. Mayall, B. (1993). Keeping healthy at home and school: It’s my body so it’s my job. Sociology of Health and Illness, 15, 464–487. Mayall, B. (1996). Children health and the social order. Buckingham: Open University Press. Morgan, M., Gibbs, S., Maxwell, K., & Britten, N. (2002). Hearing children’s voices: Methodological issues in conducting focus groups with children aged 7–11 years. Qualitative Research, 2, 5–20. Oakley, A., Bendelow, G., Barnes, J., Buchanan, M., & Hussain, O. (1995). Health and cancer prevention: Knowledge and beliefs of children and young children. British Medical Journal, 310, 1029–1033. Secker, J., Armstrong, C., & Hill, M. (1999). Young people’s understanding of mental illness. Health Education Research, 14, 729–739. Silverman, D. (1987). Communication and medical practice. London: Sage. Strong, P. M. (1979). The ceremonial order of the clinic. London: Routledge and Kegan Paul. Tates, K., & Meeuwesen, L. (2001). Doctor–parent–child communication A (re)view of the literature. Social Science & Medicine, 52, 839–885. Thomas, N., & O’Kane, C. (1999). Experiences of decision making in middle childhood. Childhood, 6, 369–387. Tuckett, D., Boulton, M., Olson, C., & Williams, A. (1985). Meetings between experts. London: Tavistock. United Nations. (1989). Convention on the rights of the child 1989. Geneva. UN. West, P. (1976) The physician and the management of childhood epilepsy. In M. Wadsworth & D. Robinson (Eds.), Studies in everyday medical life. London: Martin Robertson. Young, B., Dixon Woods, M., Windridge, K. C., & Heney, D. (2003). Managing communication with young people who have a potentially life threatening chronic illness: Qualitative study of patients and parents. British Medical Journal, 326, 305–310.