Evolving Roles: Adolescent Perspectives on Shared Decision Making With Their Parents and Health Care Providers

OBJECTIVE: Shared decision making (SDM) involving adolescents presents unique challenges. To adequately support and evaluate SDM that includes adolescents, parents, and health care providers, it is imperative to understand adolescent perspectives. This study aims to describe the perspectives of adolescents with chronic health conditions regarding sharing medical decisions with their parents and health care providers. METHODS: Adolescents ages 12 to 17 years with chronic health conditions participated in semistructured qualitative interviews via video conference. Interview questions focused on adolescents' decision-making experiences. Additionally, concepts of SDM were explored in depth. Transcribed interviews were coded and thematically analyzed using a combination of inductive and deductive coding. RESULTS: Sixteen adolescents participated in qualitative interviews (median age 14 years, 62% male, 62% non-white). Analysis of interviews revealed 4 themes that highlight adolescent perspectives on the process of SDM: defining the adolescent's role and degree of participation in decisions, understanding complex information, sharing the adolescent's unique perspective, and coming to consensus. Adolescents in this study described increasingly active participation in more complex decisions as they gained independence, experience, and understanding of health information. Adolescents discussed the importance of their perspectives being acknowledged in the final decision. They also felt it was important to identify values they have in common with their parents and health care providers. CONCLUSIONS: Results from this work indicate that adolescents with chronic health conditions experience evolving roles in SDM. These data can be used to tailor and improve SDM to address adolescent needs through active engagement, personalized communication, and inclusion of adolescent values.