In teenagers with diabetes, transition toward autonomy in self-management involved growth in self-reliance and support from others
A Karlsson, University of Linköping, Sweden;
How do teenagers with type 1 diabetes experience the transition toward autonomy in diabetes self-management?
32 teenagers (mean age 15 y, 56% girls) with type 1 diabetes.
Teenagers participated in individual interviews (45–75 min) and were asked to describe their daily experiences with diabetes, with a focus on self-management. Interviews were audiotaped, transcribed verbatim, and analysed thematically.
Transition to autonomy in diabetes self-management was complex; teenagers were sometimes willing to take responsibility for their diabetes management and sometimes not. Transition was characterised by the overarching theme of hovering between individual actions and support of others, which could result in unclear responsibility for self-management. There were 2 subthemes. (1) Growth through individual self-reliance. (a) Self-determination as a developmental process of making one’s own decisions included increasing factual and experiential knowledge. Teenagers felt that their parents had more knowledge about diabetes, and they were concerned about taking responsibility for their own care; however, they recognised that they were their own experts for diabetes self-care. Others could provide good advice but could not make decisions because they did not have the experience of living with diabetes. (b) Psychological maturity created possibilities for increased responsibility and freedom, which occurred as teenagers got older, became more knowledgeable, and showed they could handle daily management of their diabetes. This also involved learning to overcome difficulties, such as fear of having to self-inject insulin. However, they also recognised the potential burden of taking on more responsibility than they could manage. (c) Teenagers felt safe when their blood glucose was controlled and their motivation increased with successful self-management. Feelings of hopelessness were associated with difficulties in diabetes management (eg, “it just feels hopeless like, you try and try but it still doesn’t work”), although these could increase motivation to improve.
(2) Growth through confirmation of others. (a) Parental encouragement increased certainty of teenagers’ standpoints and included practical advice and reminders about diabetes-related tasks. However, progress was hampered when reminders were perceived as nagging or if parents became upset when self-management did not work. (b) Peer acceptance facilitated incorporation of daily self-management activities. Teenagers felt safe when their friends knew about their diabetes and their closest friends knew what to do if they became hypoglycaemic. (c) Support from the diabetes team strengthened self-esteem. Treatment was considered a collaborative process in which physicians listened, answered questions, and provided medical knowledge. Teenagers found the diabetes team to be supportive and generally relied on them, although their advice did not always fit the teenagers’ life circumstances.
The transition of teenagers toward autonomy in diabetes self-management was complex and characterised by growth through individual self-reliance and confirmation of others.
Karlsson A, Arman M, Wikblad K. Teenagers with type 1 diabetes—a phenomenological study of the transition towards autonomy in self-management. Int J Nurs Stud 2008;45:562–70.
Source of funding: Vardal Foundation—for Health Care Sciences and Allergy Research; Swedish Diabetes Federation; Federation of European Nurses in Diabetes.
The study by Karlsson et al is drawn from the increasing literature on chronic illness, which suggests that the experience of living with chronic disease is non-linear, unpredictable, and characterised by transitions rather than trajectories between milestones.
The transition experience described by Karlsson et al is significant, highlighting the importance of not assuming that, because they are adolescents, teenagers with diabetes will automatically reject assistance from significant others. The adolescents in the study emphasised the uncertainty and tenuous nature of their transitional experiences. The findings also point to the negotiation required between healthcare practitioners and adolescents with diabetes. Practitioners must engage adolescents in dialogue about the support they need for diabetes management while recognising that, despite needing help, they may still reject it.
Nurses can use the study findings to help them reflect on their assumptions about what is appropriate for adolescents’ self-management of diabetes. For example, a nurse could ask, “Do I really encourage adolescents toward autonomy in self-management or do I imply that they are not ready for that role? What are the implications for the way in which adolescents engage me in supporting their transition to autonomy?” Research with adults with chronic illness1 2suggests that the experience of “hovering between individual actions and the support of others” is a common tension in any transition of living with a chronic disease.
Parents must also make a transition from being primary decision makers and caregivers to permitting the adolescent autonomy in self-management. At present, we know little about parents’ experience of such a transition or how best to support them during this period. Diabetes care is typically structured to focus practitioner–parent interactions on the adolescent’s health status and treatment, not the parents’ needs; therefore, this facet of diabetes care has largely been overlooked.