Understanding healthcare autonomy among adolescents and young adults in the United States: a scoping review

Purpose Maps out the evidence on AYA's autonomy and decision-making in healthcare settings in the United States to provide a comprehensive and synergistic understanding of the barriers, facilitators, and other salient factors that influence autonomous decision-making. Methods This study followed the PRISMA and scoping review methodological frameworks. An electronic database search was performed using Boolean terms based on inclusion/exclusion criteria. Included studies were analyzed using narrative synthesis and thematic analysis techniques. Results The final review comprised 31 studies. Half ( n = 16; 52%) focused on adolescent autonomy in specialized care, a third focused on sexual and reproductive healthcare ( n = 8, 25%), and the remaining studies focused on general healthcare ( n = 6; 19%). Most studies defined autonomy as a primary influence in healthcare decision-making ( n = 24; 77%). Other conceptual definitions focused on reproductive decision-making and control ( n = 5; 16%) or independent functioning ( n = 3; 9%). The literature discussed various barriers and facilitators to AYAs’ sense of autonomy. Conclusions Studies regarding AYA autonomy have historically focused on specific patient populations in specialized healthcare areas. Researchers and practitioners can work towards creating tools to inform and assess interventions to support AYA autonomy in healthcare settings, including programs to improve care for youth.