Healthcare Decision-Making and Evolving Autonomy in Adolescents and Young Adults with Cerebral Palsy.

Abstract

To evaluate how adolescents and young adults with cerebral palsy (AYACP) make mobility-related health care decisions and seek their perspectives on making decisions about mobility-related health care interventions. We purposively recruited AYACP ages 13-21 years from an academic medical center to participate in qualitative semistructured individual interviews. Interview questions explored mobility-related health care interventions and decision-making. We recorded, transcribed, coded, and analyzed interviews using thematic analysis. AYACP described multiple mobility-related health care decisions and cycling between testing out and choosing interventions. The research team identified four themes: balancing autonomy and support; connecting evolving knowledge and goals to intervention outcomes motivates decision participation; limited agency; and desire for options that effectively address AYACPs' individual needs. AYACPs want to participate in decision-making about interventions to address their mobility-related goals but describe needing support from adults. AYACP also described their knowledge and goals as evolving throughout adolescence, which often motivated their participation in decisions and treatment plans. In contrast, some AYACP lacked agency in decision-making, which negatively influenced their participation. AYACP have a wide range of individual needs and struggle with finding mobility-related health care interventions that optimally address their individual needs. AYACP need support in developing knowledge and decision-making skills about mobility-related health care interventions that address their goals. AYACP would benefit from decision support to develop skills for transitioning to adult health care and engaging in decision making.