Development of Self-Management Skills in 14- to 16-Year-Old Adolescents with Chronic Health Conditions: A Qualitative Study

Background: The American Academy of Pediatrics recommends that adolescents with chronic health conditions begin to assume responsibility for their own care by age 14. The goal of this qualitative one-time interview study is to learn how 14- to 16-year-old adolescents with chronic health conditions begin to develop self-management skills and the role that caregivers play in the learning process.

Methods: Twenty adolescents ages 14-16 with chronic renal (n = 5), gastrointestinal (n = 5), hematologic (n = 5), or rheumatologic (n = 5) diseases, and 20 caregivers (dyads), completed individual semi-structured interviews discussing the adolescents' current degree of self-management. Six coders analyzed transcripts using thematic framework analysis.

Results: Three primary themes emerged: continuum, motivations, and tools. Both adolescents and caregivers described progress along a self-management continuum with varying levels of responsibility for the adolescents, ranging from passive to responsible. Caregivers' behaviors similarly varied from directive management to supported self-management. Motivations for self-management skills were described in relation to one's health, self, and others. Families utilized a variety of tools to facilitate movement toward supported self-management with the adolescent.

Conclusions: The development of adolescent self-management of their chronic condition is a complex, shifting continuum between caregiver and adolescent. This continuum may be impacted by adolescent motivation and tools/problem solving available to the family. Pediatric healthcare providers can support self-management by assessing and attending to each patient's motivations; building a road map individualized to each patient's skills; and offering time in outpatient clinic to practice self-management strategies.