Self-Management in Youth With Multiple Sclerosis During Transition to Adult Care and Adulthood: A Qualitative Study...

Abstract.

Supporting effective self-management is essential for successful transition from pediatric to adult care. There is a limited understanding of the experiences, priorities, and challenges faced by youth with multiple sclerosis (MS) during this time, so we investigated youth perspectives on MS self-management and the development of self-management skills during transition.

We conducted a qualitative study with individual interviews using the methodological framework of interpretive description. Participants were recruited from pediatric and adult MS care centers in Toronto, Canada. During interviews, participants described their experiences with self-management during transition. The research team, including youth patient-partners, used constant comparative analysis to identify themes from interviews.

Seventeen youth were interviewed (median age 18 years; range, 13-24 years; 12 girls/women). From the interviews, we identified themes about self-management during transition: a need for support and skills regarding MS diagnosis disclosure or concealment, utilization of safety nets, setting expectations, and delegating tasks. We also identified themes on the development of self-management skills: observation, knowledge exchange, explicit guidance and direction, and trial and error. Finally, the interviews highlighted that effective self-management involves self-management of medical, social, and emotional aspects of life, particularly at school and work.

In this study, youth with MS identified key self-management and skill development priorities and processes for the transition to adult care. These insights should inform comprehensive health care practices.