Sociology of Health & Illness Vol. 36 No. 6 2014 ISSN 0141-9889, pp. 823–839 doi: 10.1111/1467-9566.12110

Developing biographies: the experiences of children, young people and their parents of living with a longterm condition Lucy Bray1, Sue Kirk2 and Peter Callery2 1

Children’s Nursing Research Unit, Alder Hey Children’s NHS Foundation Trust and Evidence-based Practice Research Centre, Edge Hill University 2 School of Nursing, Midwifery and Social Work, University of Manchester

Abstract

This article reports on data from a qualitative interview study that sought to understand the experiences, choices and actions of children and young people undergoing surgery for a long-term condition and that of their parents. Using the concept of biography the article examines how the biographies of children, young people and their parents can be influenced by surgery and the ongoing management of a long-term continence condition. This article challenges previous work that characterises the presence of a condition from birth as a continuous and normal part of the illness experiences of these patients. Although this may be the case in some instances, children, young people and their parents can experience diverse and changing experiences associated with ongoing condition management as well as surgery. Biographical continuity, enrichment and disruption are all relevant concepts for such patients living with a long-term continence condition. These can be influenced by their previous experiences of their condition, their expectations, and dynamics with parents, including changes associated with development and the increasing independence of young people.

Keywords: children, young people, parents, biography, long-term conditions, continence, disability

Introduction Studies of biography in relation to illness have predominantly focused on conditions diagnosed and managed during adulthood (Faircloth et al. 2004, Locock et al. 2009, Pound et al. 1998, Sanders et al. 2002, Sangren et al. 2009). These illness trajectories are typically characterised by a sudden or unexpected diagnosis, followed by an experience of protracted deteriorating illness (Bury 1982, Corbin and Strauss 1985, Larsson and Grassman 2012). The seminal work in this field referred to this as biographical disruption (Bury 1982) while more recent work has begun to explore the influence of age, experience and context on the biographical experiences of people diagnosed or living with a long term condition (Pound et al. 1998, Sanders et al. 2002, Ong et al. 2011). The limited discussion of children and young people’s biographical experiences of illness has suggested that the presence of a condition from birth results in the normalisation of an illness or condition (Williams 2000) or that it is the long-term nature of a © 2013 The Authors. Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd. Published by John Wiley & Sons Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Maiden, MA 02148, USA

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condition which is the main influence on how it is experienced in their lives. Our data identify how the experiences of children, young people and their parents managing a long-term condition had complex influences on their interacting and changing biographical trajectories. We conceptualise the effects of surgery for a long-term condition on the biographical experiences children, young people and their parents. Background The concept of biography has focused on adults’ experiences of chronic illness or negative life events. Bury (1982) developed the notion of disrupted biographies from research with adults experiencing progressive and disabling rheumatoid arthritis. A diagnosis of a chronic illness is described as disrupting and dominating a person’s life and challenging taken for granted bodily assumptions and functions, leading to the rethinking of a person’s biography and selfconcept (Bury 1982). Corbin and Strauss (1985, 1988) explored the influence of biographical work on the trajectory and management of an illness and discussed a biographical interruption as a result of illness diagnosis. Biographical disruption has since become an established concept in the literature, although there is debate about its relevance to all those living with a long-term illness, and whether it over simplifies ‘the diversity of experience which characterises chronic illness and disability’ (Williams 2000: 41). The range of reactions to illness events has led to elaborations of the original concept of biographical disruption, including biographical reinforcement, theorised from haemophiliac or homosexual men’s experiences of an HIV infection which, against expectations reinforced their identities through their involvement in the gay movement or their reassessment of priorities (Carricaburu and Pierret 1995); biographical disintegration (Owens et al. 2008), from the shattered biographies after their son’s suicide; and biographical abruption (Locock et al. 2009); relating to people diagnosed with motor neurone disease, who were seen to lose all hope and experience the sudden breaking of their biography. Biographical continuity, in which illnesses are accepted or absorbed as part of an expected ageing trajectory, has been discussed in the context of people living with osteoarthritis (Ong et al. 2011, Sanders et al. 2002) or following a stroke (Pound et al. 1998). In this work, long-term conditions have been characterised less by change and disruption than by continuity, with minimal alterations to lifestyle and bodily functions, with the diagnosis being a normal crisis rather than unexpected (Pound et al. 1998, Sanders et al. 2002) for adults managing existing illnesses. The focus has continued to be on changes to biography for adults who have experienced a sudden diagnosis of an illness characterised by long-term deterioration or a negative life event which has caused a loss of anticipated biography or required adaptation to cope with difficult physical or emotional changes. Even when biographical experiences are described as being positive (as in reinforcement) (Carricaburu and Pierret 1995) it is so in the context of a negative diagnosis rather than biographical changes as a result of a positive intervention or change to a condition. This article extends the application of the concept of biography to children and young people undergoing surgical procedures undertaken to improve the management of their condition and their opportunities for independence. There has been limited exploration of whether the concept of biography is relevant to understanding the experiences of children and young people managing long-term conditions. It has been suggested that people who have lived with disability or long-term health conditions since birth do not experience the same degree of disruption to their lives by the long-term management of their illness as those who were diagnosed in adulthood and that existing concepts of disruption do not apply to those having lived with a long-term illness since birth (Williams 2000). Examinations of the lives of children and young people with asthma (Meah et al. 2009, Prout et al. 1999), thalassaemia or sickle cell disorder (Atkin and Ahmad 2001) identify how © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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the daily management of the condition (such as using medication and the limitations it places on activities) can become an ordinary and everyday part of life, experienced not as disruptive but as normal. Acute periods of illness can be distinct episodes that are encountered and taken in their stride (Meah et al. 2009) in order to return to a state of normalcy, rather than disrupting lives. Children, young people and parents can make many adaptations and compromises to live with their condition. The ‘normalcy’ of chronic illness has been questioned through studies of adults born with chronic illness who experience ‘shifting, disruptive and discontinuous lives’ (Larsson and Grassman 2012: 2) rather than the continuous biographical experiences suggested by Williams (2000). Children and young people managing diabetes and cystic fibrosis, both long-term conditions requiring ongoing daily intervention (and often diagnosed during infancy), have not described their condition as a normal part of their life, but experienced ongoing difficulties and challenges incorporating the management of their illness into their lives (Williams et al. 2007, Freeborn et al. 2013). It has been proposed that the pre-illness normality that is claimed to be disrupted in adults experiencing a diagnosis of a sudden, long-term illness is unknown to many children and young people who have been living with a long-term illness or disability since birth (Williams 2000) and consequently biographical disruption may not be an appropriate concept to explain children and young people’s experiences of illness, as they are still in the process of developing their identity and personhood. However, the notion of continuity may not be appropriate either if they face a diagnosis of an unanticipated, life-threatening illness (Grinyer 2007, Williams et al. 2009). Even when the unanticipated diagnosis of a long-term illness (such as cancer) is made, which could be seen to be similar to the trajectories experienced by adults, young people are described as experiencing different biographical changes from adults due to the ‘fragility of identity and independence’ which can characterise adolescence (Grinyer 2007: 275). Transition to adulthood involves biological, psychological and social development (Christie and Viner 2005). This period is normatively characterised by completing a school education, undergoing puberty, entering the workforce, attaining financial independence and independent residence, and eventually becoming a parent. Although there are cultural ‘age expectations’ about the timing and order of transitions during the life course (Elder 1998), these transitions may vary across gender, cultures and social classes. A common expectation is that adolescence involves increasing independence (Hogan and Astone 1986) and the development of a more separate life course (Goldscheider and Goldschieider 1989), although the period of transition into adulthood has been described as being longer than adolescence, with the emergence into adulthood lasting into the late twenties (Arnett 1997). This emergence into adulthood incorporates the development of autonomy and human agency, the ability to make choices, decisions and actions independently to construct a life course (Arnett 2001, Elder 1998), while recognising that the influence of family, interconnected lives and societal influences continue to shape this development. The transition to adulthood can be influenced by the presence of a long-term condition where young people can struggle with creating and maintaining a personal identity (Lowton 2004); experience uncertainty about the future (Beresford and Davison 2006); encounter difficulties in influencing decisions about their condition (Kirk 2008) and remain dependent on parents or carers for the ongoing management of their condition or experience problems in transferring the responsibility for the management of their condition from their parent to their child (Meah et al. 2009, Williams et al. 2007). Despite the improvement in the life choices available to disabled young people and those with long-term conditions through increased access and engagement with education, employment and health and social care systems (Leiter © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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2012), they still experience a different journey from their peers and the expected transition to adulthood and a more independent life course. Despite these life opportunities, it is suggested that interdependence with parents continues to be more relevant to young people who are managing a complex and long-term condition, than on the development of detached independent lives (Fisher 2007, Allen and Gregory 2009). Children and young people’s circumstances can be fundamentally different from that of independent adults living with long-term conditions who may have established careers, marriages and children of their own and are at a different stage in their life course. The literature has focused predominantly on the biographical experiences of adult individuals and changes in their relationships with spouses and partners as dependence increases as a result of progressive long-term conditions (Corbin and Strauss 1988, Larsson and Grassman 2012). This suggests that a person’s biographical experience of illness can be influenced by the biographies of those around them. This is important because children and young people with a long-term condition can be reliant on parents and other adults to carry out aspects of care for their condition and because family relationships can influence the management of long-term illness or condition (Giarelli et al. 2008, Meah et al. 2009, Naar-King et al. 2009, Newbould et al. 2008, Williams et al. 2007). The biographies of parents can become entangled with those of their children with long-term conditions (Pejlert 2001, Harden, 2005). However, there is a lack of research exploring children and young peoples’ experiences of long-term conditions and surgery from the perspective of their biography and life course. Research aim The study aimed to explore children’s, young people’s and their parents’ experiences of surgery and of managing and living with a continent stoma. There was a particular focus on investigating how children and young people participate in decisions and choices about their condition management. Context of the study The children and young people in this study had congenital conditions (spina bifida, anorectal anomalies, sacral agenesis and bowel dismotility) and had experienced faecal, urinary or double incontinence from birth. Their continence throughout childhood had been managed using nappies or pads, rectal washouts, rectal enemas, urethral catheterisation and oral or rectal medication. These interventions had failed to provide satisfactory continence clinically or socially and each child or young person had a continent stoma (an abdominal channel usually fashioned from the appendix or bowel) formed to enable them to pass a catheter into their bladder or bowel (Malone et al. 1990, Mitrofanoff 1980). The aim of this surgery is to improve continence and provide opportunities for the patient to manage their condition with increasing independence. Management following the surgical procedure is life-long and involves regular catheterisation (bladder catheterisation 3–4 hourly during the day and bowel washouts, which usually require remaining on the toilet for up to an hour every evening or alternate evenings). This qualitative study sought to understand the subjective experiences, choices and actions of children, young people and their parents when the former have surgery and live with a longterm continence condition.

Methods The qualitative study design included a longitudinal element, following up children’s experiences over time in order to explore their periods of adaptation and highlight the processes and © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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strategies they adopted in response to continent stoma surgery. The collection of data over a prolonged time (before and to up to 10 years following surgery) supported the conceptualisation of changes to their biography for both the young patients and their parents, and highlighted the variability of continence management over time. It enabled an exploration of the construction of individual trajectories throughout the process of surgery and growing up (Ruspini 1999) through prospective and retrospective accounts. The study was informed by the principles of grounded theory (Charmaz 2003, Glaser and Strauss 1967) and recognition of the fact that children and young people are competent to speak for themselves about their experiences of, and perspectives on the social worlds in which they live (James et al. 1998). A total of 49 face-to-face semi-structured interviews were conducted with 17 families recruited from two specialist children’s hospitals in the north of England. The families were recruited through an invitation letter posted to them by the clinical team responsible for their care. The interviewees included children and young people (aged 9–19 years of age) and their parents. Three children, young people and their parents were interviewed before the formation of a continent stoma and then on two more occasions (6 weeks and 6 months) after the operation (14 interviews). A separate group of 14 children, young people and their parents were interviewed who had lived with a continent stoma for between 6 months and 10 years, and six of these families were re-interviewed after 6 to 12 months (35 interviews). Four of the young patients used wheelchairs, one used a walking aid and 12 did not require mobility support. Data from interviews with parents and their children provided the opportunity to compare and analyse the differences in their accounts and allowed an exploration of the interaction between biographies, although the collection of the different accounts from within a family group proved to be a challenge in ensuring that the voices of all family members were heard (Backett-Milburn and Harden 2004). The intention was to interview the children and young people separately from their parents, where possible, in accordance with the dominant discourse in methodology that this promotes openness and discussion of sensitive topics (Duncan et al. 2009). Children or young people chose whether or not they had a parent present at the interview. Most interviews were conducted separately (N = 40), but as the format was informal parents sometimes walked in and out of the room during the interview. Nine children elected to be interviewed with their parents but this did not appear to constrain them from expressing their views and in some instances the parents were able to prompt discussion of topics, sparking off an interesting conversation. In all cases the young participants were afforded some time on their own (often at the end of the interview) to ensure that they had private space to share their accounts with the researcher (Duncan et al. 2009). The interviews were conducted in the home, apart from two in a quiet hospital area. Writing and drawing activities (spider diagrams, responsibility tables and pictures) (Stalker and Connors 2003) were used to encourage the young patients to ‘give voice to their experiences in ways which are meaningful to them and which are not reliant on verbal competencies’ (Lomax 2012: 106). The approach was therefore to engage the young participants in child-centred forms of communication that were creative, flexible and responsive to their preferences and abilities. ‘Child-centred methods’ can be used by adult researchers in a highly controlled and managed way (Holland et al. 2010). Therefore, a flexible approach was taken: some young participants chose not to engage with the written activities; some adapted the activities to match their preferences and others used the paper and pens in different ways than that suggested by the researcher. The activities were not interpreted as data, but were used to encourage the children and young people to discuss their experiences and provide explanations to the researcher of the content of their drawings and written work. The repeated interviews with the young patients helped relationships to develop and the interviewer (LB) became © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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familiar with the children’s abilities and means of expressing themselves (Pelander and LeinoKilpi 2004). Although the interviewer was experienced in the clinical speciality she was not involved in the care of the children or young people. Memos and field notes were used extensively throughout the study to record the influence of the researcher on data collection and analysis and aid reflexivity, because researchers’ beliefs and interactions can influence the research process (Charmaz 2006) Data were analysed in line with the constant comparative method (Glaser and Strauss 1967); data collection and analysis occurred simultaneously and informed the sampling strategy. Theoretical sampling focused on refining ideas, developing categories and adding to the fullness of the understanding of the concepts (Cutcliffe 2000), by recruiting participants with different characteristics and experiences of surgery and returning to the young people and their parents already interviewed to collect further data. NVivo was used to support the data analysis process; codes were inductively derived without the use of an analytical framework. The accounts from the children, young people and their parents were analysed by interpreting the different perspectives of having, and living with, a continent stoma. Initial codes were constructed (focusing specifically on actions and processes) and applied to each piece of data (Charmaz 2006). Examples of the action codes used include ‘wrapping up in cotton wool’ and ‘arguing over the regime’. These aimed to code according to the language of actions rather than according to topics (Charmaz 2006). The analysis then compared data with data and incident with incident (Glaser and Holton 2004) to create more focused codes, which became more selective and conceptual and labelled larger segments of data (Glaser 1978). Diagramming was used towards the end of the analysis to explore schematically the relationships between three categories (self-presentation, gaining independence and information and decisions about the operation), which helped to develop a core category that was the key concept linking all three categories. The core category was ‘developing a biography: growing up with a long-term condition’ which conceptualised the way in which surgery influenced the biographical changes that occurred both as a result of the surgery and as the children developed into young people and young adults. Memoing was used throughout the data collection and analysis process, specifically in capturing the meaning and ideas of the developing categories and how they interconnected (Glaser 1978). The principles of rigour described by Chiovitti and Piran (2003) guided this study. Participants guided the inquiry process by describing their experiences and the issues of importance to them and using used the participants’ own words in the naming of codes and categories. The theoretical construction was checked against the participants’ meanings by exploring the emerging findings with participants during subsequent interviews. This promoted the development of theoretical concepts that were based in a meaningful way on the participants’ experiences. The researcher used reflexivity and discussion in the research team (SK, PC) to account for how her experiences and insights about the phenomenon might have influenced the data collection and analysis. Ethical considerations The project was approved by a National Health Service Research Ethics Committee and through local research governance committees in the hospital trusts involved. An activity was developed and used that was seen to facilitate the young patients’ understanding of their involvement in the study. This used picture and word cards to prompt discussion around issues including consent, voluntary involvement and confidentiality (Bray 2007). Consent and assent were reaffirmed in those children, young people and parents who were involved in more than one interview. © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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Findings The families described different experiences of continent stoma surgery, with many of the children, young people and parents comparing life and continence management before and after the operation. There was variation between different families’ experiences and also variation between the accounts of the children and their parents from the same family. In some families there were tensions between the different accounts of the parents and their children and in some instances children and their parents discussed similar changes to their biographies following surgery – these were different and supportive biographies rather than constituting a shared family biography. These variations of experiences will be discussed using the concepts of biographical enrichment, biographical continuity and biographical disruption, firstly relating to the experiences of children and young people and then to their parents.

Children and young people’s biographies Biographical enrichment The aims of continent stoma formation are to improve continence and the ability of the young patients to self-manage their condition. Some of the young participants described the surgery as improving their continence regime and, as a result, their self-concepts, which provided opportunities for them to develop enriched biographies. Enriched opportunities In these families management had changed following surgery with incontinence (either having an incontinent stoma or managed with wearing nappies or pads) being replaced with the continent stoma, which enabled them to be clean and dry. The older children and young people’s accounts suggested that they saw themselves and their future in a new light. The continent stoma was described by Paul (aged 19) as, ‘changing the way things were, and giving me a bit more chance to actually do what I wanted to do in life’. Here Paul referred to confidently attending social activities without fear of incontinence and this had provided opportunities to him for employment, previously viewed as unrealistic due to the unpredictable nature of his condition. Activities such as swimming, which had been avoided before the operation due to possible incontinence incidents, were now possible. Surgery was described by Lizzy’s mother as enabling her daughter to ‘do lots of different things she would never have done before’ (mother of 12-year old Lizzy). In these families illness-related work had been renegotiated, with a re-examination of roles and responsibilities. These changes had often been planned by the families prior to surgery and were expected and encouraged by them. The young people described having increased control over managing their condition and this seemed to have a positive effect on their views about their developing biographies and how they discussed their involvement in future activities and developing into adulthood. Before the operation activities that are seen as a normal part of growing up, such as staying at a friend’s house, could be problematic when they had to rely on their parents to carry out procedures. Paul (aged 19 years) who used a wheelchair and before the operation catheterised urethrally, described how this restricted his activities: If I went out, I would have to come back every 4 hours. So I couldn’t like, say, go on a long trip to [place] or somewhere. I’d have to be local and I would have to have someone there, either my mum or my dad, or whoever else was trained to do this, to be with me constantly so that they could actually help me do it. © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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After the operation, independent management and the attainment of skills meant that young people had increased control over their condition, Claire (aged 12) explained ‘I can go to my mates and when it is due catheterisation I can just do it myself and stay at my friend’s house’. The attainment of self-management skills appeared to influence the ability of the young people to see themselves as independent individuals outside the family unit. Enriched identities The visibility of their impairment was in many cases reduced following surgery, and woven throughout the interviews was the sense of new opportunities through a change to the previously expected life trajectory. Children and young people could choose to conceal their continence condition following surgery, whereas before the operation it was difficult to conceal nappies, incontinent stomas or the odour associated with faecal leakage. The young participants said they now had a choice about what and with whom they shared information about their condition. Katie (aged 11) said that ‘I just find I only like to tell people certain things’. Wearing nappies and dealing with episodes of incontinence before surgery in school and other social settings had been a particularly difficult experience for many children. Alice’s mother described how her daughter had been verbally taunted both in and out of school: ‘she even has children walk past her and they will say to her while she is in the park “nappy girl”. But kids are cruel aren’t they?’ (Mother of 11-year old Alice). This difficult experience of wearing nappies before surgery appeared strongly to influence how the young patients embraced the opportunity for improved management of continence as a result of surgery. Katie (aged 11) described the operation as the major turning point in her life: Katie: I am proud of it (stoma); it saved my life. Researcher: Why did it save your life? Katie: Because then I would have to stay in nappies and I would try and kill myself. Following surgery, the young patients could incorporate the timing of their illness management work to fit in with their everyday life and activities (for example, conducting washouts and catheterisations in private locations) which enabled them to conceal their condition. Even when the young people had other visible impairments, their ability to conceal their continence condition through the presence of the continent stoma was described positively, with incontinence being described as something ‘not to be shared with others’. The social stigma associated with continence conditions has been noted in previous work both with adults and children (Diseth and Emblem 1996, Kelly 1992). Most of the literature which discusses biography focuses on the management of a progressively deteriorating illness in adults, which is characterised by the increasing reliance on others for assistance and care (Bury 1982, Larsson and Grassman 2012, Locock et al. 2009). Worsening illness often leads to intrusion into previously private aspects of care and a lack of independence, which have been described as factors that can create biographical disruption (Larsson and Grassman 2012). However, the children and young people in this study experienced surgery as a positive influence on their developing biographies as a result of a decreasing reliance on others for care and increasing independence. Indeed, in some cases the surgery was seen as life changing. Although biographical enrichment has not been previously discussed in the literature, renewal, revival and restoration (Charmaz 1987, 1995, Corbin and Strauss 1988, Frank 1995, Sanders et al. 2002) have all been identified as improvements to their quality of life following the diagnosis of illness in adults (Locock et al. 2009), although this is still in relation to the diagnosis of a long-term, deteriorating illness. The existing descriptions focus on positive biographical changes that have resulted from a sudden illness © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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diagnosis, leading to an adult’s life taking on new meaning by their appreciating previously unconsidered aspects of life (Corbin and Strauss 1988) and creating a new and more favourable identity than before diagnosis, with a deeper understanding of themselves and others (Asbring 2001). In these young patients, surgery served as a turning point in their life course and a positive transition to increased opportunities and independence and management over their presented self, as opposed to adults’ often deteriorating illness and reduced independence. Biographical continuity Some young participants described having limited changes to their life following surgery. The management of their condition and chronic illness were described as a normal and integral part of their lives. The children and young people described living with other impairments and specifically their continence condition in terms of ‘no big deal’ (Jack, aged 16) and one parent described continence management as ‘part of the whole package’ (mother of 10-year old Luke) of her son. Continuity of condition management The day-to-day life of these young patients had not changed after surgery and a sense of continuity was woven through these interviews. They explained that they continued to engage in similar activities in similar ways and that no discernible changes to managing their continence or their identity had occurred after surgery. The routine of caring for the condition through regular bladder catheterisations or bowel washouts had become so integrated into some families’ lives that their management was described as being the same as ‘putting the kettle on’ (mother of 15-year old Louise) and appeared to be seen as an integral part of the family’s everyday work. Managing the continence condition had become an expected and normal part of life for these families and care was done ‘automatically, without thinking’ (mother of 13-year old Emily). These families seemed to have limited expectations of the surgery and anticipated minimal changes to their life, with the operation being described by one child as ‘just another operation’ (Luke aged 10) and one mother said that ‘if you don’t expect anything, you are not disappointed’ (mother of 13-year old Sarah). These families seemed to expect biographical continuity rather than change or improvement after surgery. These young patients conducted a regular invasive procedure in order to remain continent, both before and after surgery. Following the operation, procedures were conducted through the newly formed abdominal channel rather than the urethra or rectum. Although their lives could appear disrupted when compared with children who did not have this condition, they did not discuss their biographies as being particularly difficult or challenging as such and management and surgery were described as just a part of life and another step in their illness trajectory. The experiences of these young participants reflect Williams’s (2000) work, which describes the continuity that can pervade the lives of people born with chronic or congenital conditions, where illness becomes normalised and anticipated. Maintaining continuity in these families appears to reflect what has been called ‘learning how to tolerate or put up with the effects of illness or long-term conditions’ (Bury 1991: 460). Frustrated continuity Surgery aimed to provide new opportunities for these young patients to gain skills in managing their treatment themselves and improve their independence, through being able to reach the continent stoma on their abdomen and not needing to rely on an adult carer. The term continuity has connotations of stability and avoidance of disruption, but some of these young participants experienced enforced continuity; they were not able to fulfil their expected goals. Several young patients were disappointed that their independence did not improve to match their expectations, either because of medical complications or because their parents continued to manage their illness work following the operation. Management © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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(catheterising the continent stoma) was described as done ‘quicker’ or ‘easier’ by their parents. As Louise (aged 15) said, ‘I do offer and he [dad] says “No, I’ll do it, it’s quicker”. In these cases continuity meant a lack of change in roles and in the control of their illness, which remained predominantly in the hands of their parents. Tensions were expressed through young people feeling frustrated that they were neither progressing nor encouraged to progress towards more autonomous management of their condition. There seemed to be minimal negotiation or discussion in some families about ‘what tasks were to be done, how, and by whom’ (Corbin and Strauss 1985: 237). The roles and responsibilities for the management of the illness in these families were neither flexible nor responsive either to the children’s developmental maturation or to their changing illness trajectory, and so there was not the letting go and taking on of tasks (Corbin and Strauss 1988) relating to the condition that these children and young people sought. The absorption of the continence condition and management into being a normal part of life could result in the loss of opportunities for change and enrichment for these young patients. Biographical disruption Although most children, young people and parents experienced degrees of continuity or enrichment postoperatively, a small number of children and young people did encounter disruption or aspects of disruption to their biography. The disruption to illness management, biographical work and their roles in the family seemed to pervade their lives. Disrupted expectations It appears that the young patients who expressed the greatest difficulty after surgery reported experiencing unexpected surgical complications or the long-term regime after surgery that had intruded more than expected into everyday life. The unanticipated nature of these difficulties led this group of families to reflect back critically on the information provided pre-operatively to prepare them for life following surgery, stating that they ‘went in blind’ (mother of 12-year old Chloe) to the operation. It seemed that the expectations of these patients and their parents of changes to the types of work needed after the operation, both that related to the illness (washouts and catheterisations) and the biographical work necessary (in terms of social interaction and developing identity), did not match their experience. The parents in these families described limiting or ‘shaping’ the information they shared with their children pre-operatively to protect them from anxiety. This may have resulted in unrealistic trajectories being portrayed to the patients. Thus, the patients had unrealistically high expectations of what life would be like following the operation. These young patients said pre-operatively that the operation would make ‘all their troubles go away’ (Ben, aged 11) and when complications or difficulties were encountered after surgery this created upset and disappointment (Bray et al. 2012). The young patients in these situations were not provided with the opportunity to construct realistic biographies of what life would be like after surgery and this created a disruption of aspirations which necessitated a sudden revision to their expected life following the procedure (Williams et al. 2009). These young patients had managed their continence condition throughout childhood and had experienced many difficulties (such as public incontinence and periods of hospitalisation) which were described as traumatic and upsetting even when they were not an unexpected part of their life. Surgery had become another negative event for them which had disrupted their expected illness trajectory of improved management and increased independence and interaction with peers. Aspects of the management regime impinged on their lives more than they had expected, and this was often exacerbated as the children grew up and sought more social independence. Alice (aged 11 years) had ongoing battles with her parents to come in from playing with her friends every night when her bowel washout was due: © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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I’m just sick of having – like – every night I can’t go straight to bed when I’m dead tired I have to go and get my washout done, sit there waiting for it to finish, get up and then have to get myself all ready for bed. (Alice aged 11 years) The influence of expectations on the biographical experiences of illness is consistent with Bury’s (1982) work, which describes how norms and expectations influence how an event is experienced. Those who express lower expectations of their health have been shown to approach illness with a greater acceptance than those who hold higher ideals of what their trajectory will involve (Pound et al. 1998). Current work focusing on expectations and illness trajectory is drawn from research with adults. Expectations of illness trajectory are here shown to influence how young patients experience surgery and ongoing management of their illness. Parents’ biographies The parents’ biographical experiences after surgery were entwined with the development of their child’s biography, although these experiences were not necessarily aligned. In some cases parents’ accounts were similar to their child’s in that surgery influenced for the better how their lives changed after the operation. Some of the parents’ biographies and established roles dominated their child’s opportunity to develop their biography. Enriched parental biographies Some parents described a sense of enrichment after their child’s surgery, having been released from caring roles and being now able to work outside the home or go out socially. Prior to surgery parents often felt unable to allow others to care for their child due to the intimate activities involved, such as urethral catheterisation or personal caring activities including cleaning faecal or urinary leakage. James’s mother explained that: I could never get a job, really, because in the holidays, he would have to go to a carer who would be quite happy to clean him if he soiled. (Mother of 11-year old James) The operation enabled changes in the illness work carried out by parents and the renegotiation of responsibility for their child’s illness management so that the parents could spend more of their time on everyday-life work both within and external to the family. The ability of their children after surgery to manage their condition independently enabled parents to refocus and redirect their biographies towards previously unachievable aims and opportunities. Continuity in parental biographies The interviews with some parents were pervaded by their expectations that their caring role would continue in a similar way as before into their child’s adulthood. The surgery was described as just another step in their child’s medical history. Parents said that the health professionals’ expectations that the young people would develop independence in line with societal perceptions of transitioning into adulthood were unrealistic. Emily’s mother stated: I think that’s what they are aiming at but I think because she is so severely disabled, I don’t feel myself that she will ever be fully independent herself. But I know that is the idea of having this done. (Mother of 13-year old Emily) Parents described their children as already having experienced difficulties in life and that management of the continent stoma was ‘too much’ for them to have to worry about. Luke’s mother said that ‘he shouldn’t have to deal with that [catheterisation] as well, should he?’ (Mother of 10-year old Luke). Such sentiments could appear akin to the protection that is © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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evident in any child–parent relationship. Many of the parents described their ongoing care and management of the condition as ‘mollycoddling’ their children. In some cases, this could restrict their child’s opportunity to learn the management skills necessary to be independent, which could, in turn, continue to restrict their contact with peers outside school. The young participants’ dependent identities seemed to have become such an integral part of the parents’ biographies that when the young people began to develop autonomy or seek opportunities to develop independence the parents did not always recognise or promote their efforts. Louise’s mother reflected back on how she had continued to manage her child’s regime, which had limited Louise’s ability to engage with social activities and gain skills in managing her condition: To be honest with you, I think if I’d have been told that she had to do it herself I’d have just turned round and said ‘Who are you talking to. She is my child and I’ll do what I want. But that was then, but now, looking back, yes, I really do believe if you are like me –won’t let her move, won’t let her do nothing – then yes, I do really think you have to be told that for them, it is the best option, let them do it themselves. (Mother of 15-year old Louise) The development of independence in these young patients was not just defined by their own readiness to accept responsibility (Kirk 2008) but in the readiness of their parents to relinquish their roles. For some of the children and young people undergoing surgery it was the continuity of their parents’ biographies and their perceived need to continue to manage their child’s condition which limited both the young patients’ opportunities for independence and their future aspirations. Disrupted parental biographies Although many parents said their child had gained improved independence there were occasions when this could cause a temporary biographical disruption for the parents themselves. The increased independence of young people after surgery and their management of their condition themselves could cause parents to experience feelings of loss, as Paul’s father said: ‘I just had nothing to do basically’ (father of Paul aged 19). Parents (mothers and one father) described feeling they were no longer needed when the physical caring tasks they had often conducted from the birth of their child became their child’s responsibility and how they initially struggled with filling the time that had previously been occupied by this illness-related work. The change following surgery in some cases could be sudden. Katie’s mother described how: It changed our lives almost instantly, from her coming home from hospital, within 2 or 3 weeks our lives had changed, my life had changed, I felt ‘God, she doesn’t need me as much’. (Mother of 11-year old Katie) Parents needed to re-evaluate their role and engage in different types of family everyday work to replace previous illness-related work. Parental biographical disruption has been described in the context of a suicide or a sudden diagnosis of illness in children (Harden 2005, Wilson 2007) but not in the context of children developing autonomy and self-management skills in an existing condition. These accounts can be seen to echo parents’ experiences of loss, characterised as the empty-nest syndrome, where children move from the family to independent living (Goldscheider and Goldschieider 1989). Some of the parents had not anticipated how their caring roles would change after surgery and the process of transferring responsibility for condition management to their child, as reported in other long-term conditions (Williams et al. 2007), was not evident in the expected trajectories of some parents. © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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Conclusion The concept of biography in relation to illness and long-term conditions in children and young people has been under examined both empirically and theoretically. Previous studies have focused predominantly on the experiences of being diagnosed with a long-term, deteriorating illness in healthy adults who may have established identities already established prior to the onset of illness (Faircloth et al. 2004, Locock et al. 2009, Pound et al. 1998, Sangren et al. 2009). This study shows that disruption and continuity may not describe the biographical experiences of all children and young people managing long-term conditions. Having an impairment or illness since birth is not the primary influence on the experiences of surgery of children and young people, and their ‘time spent with their condition’ did not make it easier or harder for them to confront their life or complications after surgery (Larsson and Grassman 2012). This contrasts with Williams’s (2000) thesis that young people who have lived with a medical condition from birth experience illness and management of their condition as part of everyday life and ‘continuity rather than change’ would pervade their experiences (Williams 2000: 50). The impact of the surgical procedure on the continence regime was experienced differently by different individuals and was influenced by a nexus of factors, including their previous experiences of the condition, its symptoms and complications, their own expectations and dynamics and their interactions with their parents. The expectations of the children, young people and parents of what life would be like after surgery and in the future, as they developed into young adults, influenced their transition into managing and living with a continent stoma. In some cases it was the disrupted expectations that governed their response to the surgery and management of their condition – the biography that might have been. Children, young people and their parents experienced diverse and changing biographical experiences, ongoing transitions and disruptions (Larsson and Grassman 2012) associated with surgery, ongoing condition management and growing up into adolescence and adulthood. In some instances the disruption they experienced could be the result of bodily changes, life transitions or complications in their management of their condition. Biographical enrichment emerged as a concept to describe the positive biographical changes after surgery, providing them with new opportunities to develop their life course in line with the societal expectations of employment and social independence to develop peer and personal relationships. Young people described their increased ability to ‘make their own map’ to travel into adulthood (Leiter 2012: 71). Growing up and transitioning into adulthood continued to be influenced by their condition, but their experiences were shaped not only by their condition but also by their relationships and interconnected lives with others and their expectations and aspirations. An important contribution of this study is its exploration of the interplay between the biographies of children, young people and their parents and how these can be supportive or conflictual. Previous research has focused on partners caring for their spouse (Corbin and Strauss 1988) or on individual biographies of children (Grinyer 2007, Williams et al. 2009) or their parents (Harden 2005, Pejlert 2001, Owens et al. 2008), but there has been little consideration in the literature of the interaction between different biographies within a family. This study develops a discussion on how different biographies can impact on each other (Williams et al. 2009, Young et al. 2002) and how parents reconstruct their biographies differently in response to their child’s chronic or long-term illness (Harden 2005, Pejlert 2001). These findings are consistent with previous work which suggested that life trajectories can become entangled (Owens et al. 2008) and adds to this work by exploring the influence that parental biographies can have on the developing biographies of their children. Young peoples’ biographies can become embedded in those of their parents, resulting in their own developing biographies becoming unacknowledged or restricted. The entwined biographies within a family © 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

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have been noted previously, although not categorised as such; members of a family have been described as having ‘linked lives’ or ‘interlocking trajectories’, where lives are lived interdependently and transitions in one member’s life course influences others in the family (Elder 1998). The analysis highlights the interwoven nature of the biographies of children, young people and their parents and shows that it is difficult to explore individual biographies without taking into account different influences within a family. The recognition that lives are embedded in social relationships with others (Elder 1998), is particularly relevant to understanding experiences of young people who are developing social relations with friends and negotiating what may be changing dependencies and relationships within the family. This has relevance to other groups of children and young people managing long-term conditions; both those born with congenital conditions and those diagnosed with a long-term condition in childhood; and highlights how biographies within a family affect the work of illness management. This study adds to the current body of knowledge on biography and responds to the call by Williams (2000) to extend the biographical focus of studies away from the predominant concern with the middle years of life to an exploration of different parts of the life course.

Strengths and limitations of the study The collection of data over a prolonged time (through retrospective and prospective accounts) specifically supported the conceptualisation of changes to biography for the children, young people and their parents. The collection of accounts from both children and their parents enabled an in-depth analysis of biography and interdependent lives. This would not have been possible if only children or their parents had been involved. The small number of children, young people and parents recruited pre-operatively is a limitation of the study, although those interviewed before surgery (three families) were able to provide rich accounts of their expectations and experiences of surgery. Address for correspondence: Lucy Bray, Children’s Nursing Research Unit, Alder Hey Children’s NHS Foundation Trust and Evidence-based Practice Research Centre, Edge Hill University, UK. e-mail: [email protected]

Acknowledgement The authors would like to thank the families who participated in the study and the anonymous reviewers for their guidance in developing the article.

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© 2013 The Authors Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd