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Understanding the developmental and psychological needs of young people with diabetes

2005; Wiley; Volume: 22; Issue: 2 Linguagem: Inglês

10.1002/pdi.751

2047-2900

Yvonne Doherty, Gail Dovey‐Pearce,

Childhood Cancer Survivors' Quality of Life

Practical Diabetes InternationalVolume 22, Issue 2 p. 59-64 ReviewFree Access Understanding the developmental and psychological needs of young people with diabetes Implications for providing engaging and effective services Dr Y Doherty BSc(Hons), MSc, Corresponding Author Dr Y Doherty BSc(Hons), MSc DclinPsychol, Consultant Clinical Psychologist in Diabetes yvonne.doherty@northumbria-healthcare Northumbria Healthcare NHS Trust, North Tyneside General Hospital, UKNorthumbria Healthcare NHS Trust, North Tyneside General Hospital, Rake Lane, North Shields NE29 8 NH, UKSearch for more papers by this authorG Dovey-Pearce BA(Hons), G Dovey-Pearce BA(Hons) DclinPsychol, Chartered Clinical Psychologist in Adolescent Health Northumbria Healthcare NHS Trust, North Tyneside General Hospital, UKSearch for more papers by this author Dr Y Doherty BSc(Hons), MSc, Corresponding Author Dr Y Doherty BSc(Hons), MSc DclinPsychol, Consultant Clinical Psychologist in Diabetes yvonne.doherty@northumbria-healthcare Northumbria Healthcare NHS Trust, North Tyneside General Hospital, UKNorthumbria Healthcare NHS Trust, North Tyneside General Hospital, Rake Lane, North Shields NE29 8 NH, UKSearch for more papers by this authorG Dovey-Pearce BA(Hons), G Dovey-Pearce BA(Hons) DclinPsychol, Chartered Clinical Psychologist in Adolescent Health Northumbria Healthcare NHS Trust, North Tyneside General Hospital, UKSearch for more papers by this author First published: 24 May 2005 https://doi.org/10.1002/pdi.751Citations: 19AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Abstract Throughout adolescence, young people are going through a period of rapid biopsychosocial change when the developmental demands ('tasks') of childhood (e.g. sustaining friendships and achieving academic success) are continuing, tasks of adolescence (e.g. developing the sense of self and acquiring autonomy) are central and certain tasks of adulthood (e.g. focusing on career, intimate relationships and future health) are emerging. Young people with diabetes are also coping with the demands of their condition, managing the change from paediatric to adult services and may have additional psychological difficulties associated with diabetes. In addition, ongoing life-events and daily hassles continue during this period. The developmental tasks of adolescence and young adulthood are described. A brief overview of recent research into the impact of diabetes upon adolescent development and the specific psychological difficulties associated with diabetes is provided. It is suggested that young people with diabetes experience a sense of difference and constancy to do with their condition. An increased prevalence of 'sub-clinical' eating problems and likelihood of depression could also be apparent in this population. Young people's suggestions for providing developmentally-appropriate services are outlined and implications for service delivery are discussed. Copyright © 2005 John Wiley & Sons, Ltd. Introduction The National Institute for Clinical Excellence Guidelines for Children and Young People1 have provided recommendations regarding diagnosis, management, support and information that should be provided for this age group and their families. Transition services, access to appropriately trained mental health care professionals and services tailored to the young person's age and 'level of maturity' were recommended. This paper proposes that services need to consider age, in terms of organising clinics and implementing services, but that 'level of maturity' implies a deeper understanding of a person's developmental stage and an application of developmental theory in order for services to be responsive to young people's evolving needs as they mature. It is suggested that psychologists, integrated within the multidisciplinary diabetes team, could contribute to staff training, service planning and research initiatives, as well as the provision of direct therapeutic work, to help improve services for young people. The developmental tasks of adolescence and young adulthood will be described, alongside findings from a qualitative study2 with some specific recommendations about the provision and structure of developmentally-appropriate care. Growing up with diabetes Adolescents are developing their sense of self, acquiring autonomy in all areas of life, continuing to master the developmental tasks of childhood and are going through a period of rapid physical change.3 In older adolescence, the life decisions associated with adulthood, incorporating careers, intimate relationships, parenthood and other important long-term issues, including future health and well-being, also come into focus.4, 5 It is widely accepted that human development does not follow a defined, linear course but the developmental tasks of adolescence outlined by Havighurst6 (Table 1) remain useful in highlighting the multiple demands upon young people. Table 1. Developmental tasks of adolescence. (Cited by Seiffge-Krenke, 1998, based on Havighurst, 1953)6 • Accepting own body • Adopting appropriate social roles • Developing close peer relationships • Preparing for occupational roles • Preparing for intimate relationships • Achieving emotional independence from parents • Establishing personal values and ethics • Striving for social responsibility Young people with diabetes are also coping with the demands of their condition and having to show high levels of motivation and self-control in order to minimise the short- and long-term health risks. They may be coping with changes to the provision and ethos of their health care, in the move from paediatric to adult services. They could also have additional, specific psychological vulnerabilities to manage, associated with the demands of diabetes, such as eating problems, social isolation, fear of stigma, poor intimate relationships, depression, poor self-efficacy and low perceived control.7-12 Not enough is known about the interaction between diabetes and personal development and the findings regarding the additional psychological vulnerabilities associated with diabetes are heterogeneous. What is recognised by those working with young people, is that the majority of adolescents with diabetes, and their families, show a high degree of skill and resilience in managing the challenges they face, and health care services need to understand how best to support them in their endeavours. Reviewing over two decades of research in this area, Yeo and Sawyer13 suggest: 'Doctors often spend much time and effort trying to achieve control, minimise disease progression, and reduce complications of chronic illness. Young people, on the other hand, are far more interested in achieving the developmental tasks of adolescence.' They conclude that broadening the disease-focused perspective would achieve better health outcomes and reduce the conflict between the perspective of the professional and the young person. Understanding the developmental impact of long-term health conditions In a comprehensive review, Seiffge-Krenke14 suggests that an increased level of illness severity or stigma and a decreased level of visible symptoms may negatively impact upon emotional, academic, physical and social adaptation—but for other factors the transactions between an individual, their environment and their health condition are not well defined and the developmental outcomes are not clear. Such factors include illness duration, age and other developmental factors, gender, personality and self-concept, social support, critical life events, normative stress and coping styles. In one of the more conceptually well defined and methodologically sophisticated studies, Sayer et al.15 focused on the concept of 'ego development' which explored the longitudinal development of adolescents and young adults with diabetes, compared to a healthy control group. A full description of this study is not within the scope of this paper but the data suggest that young people with diabetes expressed consistently lower levels of ego development across early adolescence, mid-adolescence and, most markedly, in young adulthood. The authors suggest that the demands of diabetes self-care challenge a young person's ability to become autonomous and the growing awareness of long-term complications of diabetes may be experienced as a constant threat. In these ways, diabetes can disrupt personal development. As an example, an adolescent at a stage of development prior to the development of more abstract styles of thinking would not find discussions about the long-term complications of diabetes meaningful. Instead he or she might feel confused and overwhelmed and may withdraw as a means of self-protection. The authors noted, however, the wide individual variability within the experimental groups and concluded that diabetes management must be tailored to an individual's level of developmental functioning. A recently completed, Diabetes UK funded, qualitative study analysed the accounts of 19 young people (aged between 16 and 25) about growing up with diabetes.2 The aim was to gain more of an insight into the developmental impact of diabetes by allowing the young people themselves to describe the experiences that were important from their point of view. The participants described many challenging demands, but two themes particularly stood out, in terms of the number of participants who described them and the way in which the impacts at certain developmental stages were articulated: a sense of 'difference' and the 'constancy' of diabetes. Difference As school-age children, participants described feeling different due to being 'singled-out' at school, especially at meal times. In adolescence and young adulthood, the sense of difference appeared more linked to the demands of self-care and how their peers reacted to this. For participants old enough to be aware of being diagnosed, an inherent sense of difference from their previously 'healthy self' and the 'normal well-world' appeared to occur at this point: e.g. 'I went into hospital a normal person and came out with this label on me. I didn't like that at all … I still don't like talking about diabetes … It's like having two heads without having two heads. No-one knows you are different, until you tell them,' (male, aged 22). Three participants appeared to struggle less with this issue: e.g. 'I don't feel different. Everyone's different. I'm not disabled by having to take injections, so I don't feel different,' (male, aged 17). This highlights the importance of taking individual variation into account and understanding the 'developmental resilience', coping skills and support that each young person has to draw upon. Constancy of diabetes Many participants discussed constancy in relation to planning, self-care, being mindful of vulnerability and risk, and coping with uncertainty and unpredictability. The striking aspect of their accounts was the sense of constancy in not feeling age-appropriate or 'in time' with their peers and their struggle to integrate life-long concepts into their internal world. Taking on personal responsibility for the long-term demands of diabetes is likely to be a key developmental process for young people, but one that requires engagement with the future and one's own mortality. Their peers are unlikely to be engaging with these issues in the same way or to the same degree, with the potential to further reinforce a sense of difference for a young person with diabetes. Other participants described taking responsibility for the life-long management of their diabetes and suggested that this had generalised to an overall awareness of cause-and-effect in relation to their health and mortality: e.g. 'There's nothing quite so good for an 18-year-old as a kick up the backside, to tell you you're not completely and utterly indestructible and that things can go wrong,' (male, aged 20). This again highlights specific developmental accomplishments that can come from managing a long-term health condition and the importance of not making rigid assumptions about the overall impact of diabetes upon each individual. Specific psychological difficulties There are a number of areas of vulnerability and difficulty reported for this age group.1 From a developmental perspective some of these areas of difficulty, such as testing boundaries and experimentation, could be viewed as enabling the completion of developmental tasks. Obviously this can interfere with diabetes self-management and the ambivalence expressed by the young person and the effect this has on their engagement with services can be hard for health care professionals to manage as it can result in the young person oscillating between engagement and interest in diabetes and detachment and disinterest.15 There are, however, specific problems that occur in adolescence that are beyond normative tasks and can have a long-standing impact on the person's self-management. Disordered eating The first of these difficulties is eating disorders. There has been some debate about the prevalence rates of clinical eating disorders for those with type 1 diabetes.16, 17 It does appear that 'sub-clinical' or 'sub-threshold' problems are more common, particularly insulin omission, or insulin under dosing as a weight management method as well as bulimic symptomatology.1, 18 Binge eating was found to be 2.4 times more likely than that in controls in a cross sectional sample of 361 people with type 1 diabetes and 11% admitted to taking less insulin than prescribed as a weight loss behaviour.19 Thirty-six percent admitted to reducing or omitting their insulin in a follow-up study of young women initially interviewed aged 11–25 years, with 61% of those with a history of disordered eating managing weight by insulin omission.20 Of most concern is the suggestion that the cumulative frequency of disordered eating increases into young adulthood and these individuals have poor glycaemic control and the development of microvascular complications.20, 21 This problem is unfortunately not just limited to later adolescence, but there is some evidence of higher levels of eating disturbance in 11–14 year olds.22 Many authors have proposed causal mechanisms for this increased eating disturbance a summary of which is beyond the scope of this paper. In general, however, young women with type 1 diabetes have higher BMIs in comparison to their contemporaries; there may also be issues around 'control' with a lower sense of personal control and bodily control being related to poorer glycaemic control—this appears to be exacerbated by a diagnosis of diabetes closer to the onset of puberty.23 Depression There is much evidence within the adult literature of an increased prevalence of depression in people with diabetes24 with those individuals suffering from depression having poorer metabolic outcomes.25 A similar relationship may be emerging for young people with diabetes. Above, we have already highlighted the sense of difference or stigma described by this population and the tendency for diabetes always to be in mind. Participants in the same study2 also described negative self-evaluation related to needing help following hypoglycaemia or feeling that they were not quite successfully self-caring. White26 has suggested that this negative feedback loop could increase the likelihood of depression in diabetes. There also appears to be an interactional relationship between coping styles and family dynamics and support as previously reported.27 As described earlier,2, 15 having a sense of one's mortality at such an early stage can reinforce a sense of difference, isolation and possibly hopelessness in a small number of cases. A further quote2 highlights this issue: Researcher: 'So you say you were about nine-years-old when you suddenly had that realisation [of own mortality] … What did you expect and how did that feel?' Participant: 'I was a bit scared' cause someone explained it as a life threatening disease and I thought: "Oh it can kill me." But then my mum said that's why you have to keep close control … if your blood sugars go too low and you're left for too long you can die. Then, one of my mum's friends died [from diabetes complications] so, that was what really got me thinking.' Researcher: 'And how did that feel when you were that age?' Participant: 'It was a bit scary because I thought I could die, this could happen to me but you're only young and you don't really think about dying then,' (female, aged 16). Increased vigilance for difficulties, better methods of detection of problems20 and referral on, when appropriate, to a mental health specialist1 have been recommended as methods for managing these difficulties. However, it might be argued that an appropriately trained psychologist or mental health professional would be of value as an integrated member of the diabetes team, who can oversee training, develop screening tools and has a working knowledge of diabetes. Implications for service delivery It seems the demands of diabetes create subtle, complex and changing challenges for young people, alongside the 'normal' tasks of adolescent/young adult development. More research is needed and the importance of understanding each individual's experience is critical for professionals working with this age group. A number of working party reports and national guidelines have focused on the provision of services for this age group.1, 27-32 There have, however, been few attempts to engage service users in partnership, to develop the organisation, planning and style of service delivery. In the study by Dovey et al.,2 young adult participants were firstly interviewed about their experiences of growing up with diabetes and were then invited to a focus group where they were asked to make suggestions for providing effective and acceptable diabetes services for young people. They were asked to take into account their own preferences along with the interview findings and were instructed to list a wide range of acceptable alternatives, that would inform a wider consultation process, irrespective of organisational and financial constraints, which they did recognise (see Table 2). As shown, users were able to provide some concrete suggestions for specific improvements and the tailoring of services to meet their needs. The quality of the relationship with the health care professional was seen to be essential. The style of the consultation and the attitude of the health care professional working with the young person were seen to be at the core. This involved seeing the same person and developing trust and rapport as well as including family, friends and partners when required, in a manner that was flexible and responsive. Table 2. Young adults' (16–25 years of age) suggestions for potential approaches to providing age-appropriate diabetes services, to inform a wider consultation process. (© Blackwell Publishing: from Dovey-Pearce GE, et al. Health Soc Care Community; in press)2 Improving clinic organisation Improving the consultation Improving informational care Providing 'extra' services •Seeing same person at clinic visits •Staff knowing about person's life •Make information relevant to individual •Diabetes counsellor •Specific 16–25 clinics •Encouraging person's expertise •Choice as to how information is received at diagnosis •Anonymous clinic feedback forms •16–20 and 21–25 clinics •Q & A sessions with •An 11–15 clinic •Ask what person wants from the meeting •Step-by-step information at Diagnosis •'Newly diagnosed' clinic •Mentor system: young adults mentoring adolescents •'People on same type of treatment' clinic •Being sensitive when people are upset •One information pack at diagnosis •Definite appointments by post •Talking directly to young person •Week-long course at diagnosis •Drop-in clinics •Person being able to ask questions •Regular newsletter •Clinics out of working hours •Review of diabetes websites •Weekend clinics •Staff being interested in the person as well as the diabetes •Phone contact with staff •Home visits •E-mail contact with staff •Vending machine in waiting room •Text contact with staff •Information booklets •Information video for family •Noticeboard for young people In terms of specific approaches to improving the consultation, for example, there is an increasing interest in the use of motivational interviewing with young people although most of the research has focused on substance misuse.33, 34 Ambivalence appears to be an issue and it seems 'clinical styles that are respectful, acknowledge choices and ambivalence and do not increase resistance seem to be logical'.33 Interventions are empathic, non-confrontational, use reflections, develop self-efficacy and highlight discrepancies from the young person's perspective. Baer and Peterson33 acknowledge some of the difficulties in using this approach with young people, one of which is to distinguish oneself from other adults who may have used pressure or threat messages to bring about change. In this circumstance, it is all the more important to try and engage in the young person's experience and personal goals by using a 'warm and reflective tone' before exploring how these might relate to their diabetes self-care.33 Sensitive use of language is also essential; for example, we can discuss 'choices and behaviours' rather than 'problems or issues' unless labelled by the young person in that way. Conclusions In providing services to young people it is important to recognise that as part of their development they have 'tasks' to complete and external life events, including the demands of diabetes, to manage. Some young people may have some disruption to their personal development as a result of their diabetes and this may lead to difficulties that need the expertise of appropriately trained mental health professionals; some problems will be independent of diabetes and part of the developmental process. Testing boundaries and experimentation are necessary processes in adolescent development that can make tailoring services to their needs more challenging. In all circumstances it is important to recognise 'developmental stage'/ 'level of maturity', as well as age, in terms of providing suitable interventions. This requires that all staff working with young people have a set of knowledge, attitudes and skills that comprises an understanding of issues such as biopsychosocial development of adolescence, family influences and dynamics at this stage, and consent, confidentiality and rights in this age group. (See Michaud et al.35 for details of a comprehensive approach to staff training in adolescent health care.) As we look to the future, it could be that a new role will develop within the team for a worker with background knowledge in developmental theory who would act as a co-ordinator and advocate for young people as they travel through services. His or her role would be beyond the logistics of transfer between clinics as it would allow for an assessment of the young person's needs from a developmental perspective and could allow more individual tailoring of services. Conflict of interest statement None. Acknowledgements Diabetes UK; Northumbria Healthcare NHS Trust; Ms Kathryn Dickson; Professor Carl May; Ms Caron Walker; Ms Ruth Hurrell; and grateful thanks to all participants in the Northumbria Healthcare study. Key points Service delivery to young people must be based on stage of development and not only age Diabetes can be disruptive to a young person's personal development particularly in managing a sense of difference, the permanence of diabetes, complications and mortality Young people with diabetes may have an increased vulnerability to disordered eating and low mood Young people when asked can express their service needs in concrete terms. Improving the clinic organisation, our individual consultation style and informational care (Table 2) are the main areas for development The development of trust and rapport is essential and there may be benefits to adopting counselling and motivational interviewing styles Increased vigilance to specific problems is required with links to an appropriately trained professional to obtain training, case consultation and as a referral source Managed transition is essential and there may be a role for a co-ordinator, with specific knowledge and experience of applied developmental theory, to facilitate this process References 1 National Institute for Clinical Excellence. Type 1 diabetes: diagnosis and management of type 1 diabetes in children and young people. London: National Collaborating Centre for Women's and Children's Health, Commissioned by the National Institute for Clinical Excellence, September 2004. 2Dovey-Pearce GE, Hurrell R, May C, et al. 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