Navigating the Healthcare System with a Complex Chronic Condition: Multidimensional Roles of Adolescents, Young Adults, and Parents.

Background/objective: Adolescents and young adults with complex chronic conditions and parents of children with complex chronic conditions interact frequently with the healthcare system. However, these groups have unique characteristics and needs. The objective of this qualitative study was to explore and compare the roles that adolescents and young adults with complex chronic conditions and parents of children with complex chronic conditions take on when engaging with the healthcare system.

Methods: Semi-structured interviews were conducted with seven adolescents and young adults and nine parents at two pediatric centers from December 2018 to April 2019. The research team conducted thematic analysis. Transcripts were coded independently by two coders, achieving high interrater reliability (kappa > 0.85). We present findings related to illness experience and self-described roles within the healthcare context.

Results: Informational roles described by both parents and adolescents and young adults included teacher, learner and researcher, and planner. Social-emotional roles common to both groups included source of strength, support, and hope and worrier, while the role of guardian was unique to parents. Action-oriented roles described by both groups included advocate, decision-maker, and communicator, while medical care provider was unique to parents and medical care manager was unique to adolescents and young adults.

Conclusions: Adolescents and young adults with complex chronic conditions and parents of children with complex chronic conditions balance similarly complex roles within the medical system. However, their experiences within these roles can differ, presenting unique challenges. Understanding these multidimensional roles will better equip healthcare providers to support these patients and families, especially around times of healthcare transition.