Developing Self-Management in Type 1 Diabetes at Secondary Schools: Who Is Responsible? A Qualitative Study.

IMPORTANCE: Occupational therapists have the proven capacity to improve outcomes for young adults who are self-managing Type 1 diabetes (T1D). There is insufficient understanding of adolescents' experiences of developing responsibility for diabetes self-management (DSM). OBJECTIVE: To investigate adolescents' perceptions of sharing responsibility for T1D management at school. DESIGN: This study had a descriptive qualitative design and used semistructured interviews and thematic analysis. It is the second phase of a mixed-methods study with a sequential explanatory design that investigated mechanisms of responsibility-sharing at school. SETTING: Secondary school in Australia. PARTICIPANTS: Purposive sample of adolescents (age 15-16 yr) with T1D (N = 11). RESULTS: Adolescents approached the complex occupation of school-based DSM primarily in partnership with their parents, with each adolescent having unique responsibilities while sharing others. Health care professionals and teachers reportedly had minimal involvement. Adolescents described owning most DSM tasks, with their perceptions of building independence limiting the sharing of this responsibility. A heightened sense of risk meant that adolescents were likely to communicate with others in cases of errant blood glucose readings. Current processes commonly resulted in reduced school participation. CONCLUSIONS AND RELEVANCE: Adolescents valued working responsively and interdependently with their parents to manage T1D at school, which aligns with the occupational therapy model of co-occupation. Effective responsibility-sharing depends on clear, frequent, autonomy-supportive, team-based communications. Our results showed that patterns of communication for determining school-based DSM processes were fragmented and risk focused, with limited adolescent involvement, resulting in strategies that led to students at times being excluded from school activities. Plain-Language Summary: This is the first study to use an occupational lens to examine the way in which adolescents share their responsibility for diabetes care at school. Diabetes self-management in secondary schools occurs more often when adolescents work interdependently with their parents to manage their diabetes. Adolescent involvement in formal school processes and a clearer allocation of team roles and responsibilities would better support health-promoting habits and school participation.

Responsibility sharing for adolescents with type 1 diabetes: A scoping review.

BACKGROUND: The term 'Responsibility Sharing', albeit poorly defined, has emerged from the diabetes literature, to describe a distinct mechanism for comprehensively managing the characteristic shift in responsibility that underpins the transition to self-management for adolescents. METHODS: A scoping review, following the PRISMA-ScR guidelines, distilled the literature from seven databases to answer the questions: What is responsibility sharing? Who are the key stakeholders? What factors affect responsibility transaction? What are its recognized outcomes? How is responsibility shared? RESULTS: Responsibility sharing is a transactional arrangement between youth and their caregiver/s that functions to repeatedly and flexibly apply ownership to the management of diabetes care tasks, across the course of adolescence. In the main, responsibility sharing was associated with better metabolic and/or psychosocial outcomes. Effective responsibility sharing was seen as being responsive to adolescent capacity and driven by autonomy supportive, sustained communication patterns that enable mutually agreeable responsibility assumption by all stakeholders. CONCLUSION: Different perspectives on responsibility sharing for adolescents with Type 1 diabetes, and the lack of a universal definition, have led to discordance within the literature about its operationalization and measurement. This paper proposes a definition of responsibility sharing for future researchers to apply.