Evolving Roles: Adolescent perspectives on shared decision making with their parents and healthcare providers

Chelsey B Anderson; Isabella K Pallotto; Lindsay Dominguez; Mary Anne Ammon; Adam Carle; Ellen A Lipstein

doi:10.1016/j.acap.2025.102778

Evolving Roles: Adolescent perspectives on shared decision making with their parents and healthcare providers

Acad Pediatr. 2025 Jan 9:102778. doi: 10.1016/j.acap.2025.102778. Online ahead of print.

Authors

Chelsey B Anderson¹, Isabella K Pallotto², Lindsay Dominguez³, Mary Anne Ammon⁴, Adam Carle⁵, Ellen A Lipstein⁶

Affiliations

¹ James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. Electronic address: [email protected].
² Department of Psychology, University of Cincinnati College of Arts and Sciences, Cincinnati, OH, USA. Electronic address: [email protected].
³ James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; Department of Biomedical Sciences, Texas A&M University College of Arts and Sciences, College Station, TX, USA. Electronic address: [email protected].
⁴ James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. Electronic address: [email protected].
⁵ James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; Department of Psychology, University of Cincinnati College of Arts and Sciences, Cincinnati, OH, USA; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA. Electronic address: [email protected].
⁶ James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA. Electronic address: [email protected].

PMID: 39798787
DOI: 10.1016/j.acap.2025.102778

Abstract

Introduction: Shared decision making (SDM) involving adolescents presents unique challenges. To adequately support and evaluate SDM that includes adolescents, parents, and healthcare 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 healthcare providers.

Methods: Adolescents ages 12-17 years with chronic health conditions participated in semi-structured 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 four 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 healthcare providers.

Discussion: 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.

Keywords: Adolescent health; decision making; pediatrics; qualitative research; shared decision making.