Parent and adolescent perceptions of cystic fibrosis management responsibility

What is it about?

This study explored perceptions of disease management responsibilities in adolescents with cystic fibrosis (CF) and their parents as well as adolescents’ readiness to transition from pediatric to adult CF care. 15 dyads of adolescents and parents completed surveys and semi-structured interviews asking about each participant’s current involvement in CF daily management. In addition, adolescents and parents were also asked to report how ready they believe the adolescent is to manage their disease on their own, an important factor indicating the adolescent’s readiness to transition from pediatric-focused medical care to adult-focused medical care that typically requires more independent self-management. Survey results indicated that parents and adolescents had different beliefs about CF management responsibilities. For example, adolescents perceived themselves to be more ready to transition to adult-focused medical care than their parents did. Further, adolescents felt that they had more daily management responsibilities than parents and parents felt that they had more daily management responsibilities than adolescents. Semi-structured interviews with adolescents and parents revealed 4 themes about adolescent CF management including that: 1) CF management is a delicate balance that requires a routine; 2) CF management can be a burden on adolescents, parents, and other family members; 3) family members differ on beliefs about risks of non-adherence and management responsibilities; and 4) balance is required between protecting adolescents and allowing them to have independence.

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Photo by Alexis Brown on Unsplash

Photo by Alexis Brown on Unsplash

Why is it important?

The findings highlight the increasing need to support adolescents with CF as they live longer (due to increased availability of highly effective modulator therapy) and start to take on primary responsibility for managing their disease into adulthood. Successful transition to adult-focused medical care and self-management for adolescents with CF relies on adolescents effectively taking over tasks such as engaging in daily treatments, going to medical appointments, and managing their health insurance independently. This study helps shed light on the differing perceptions that may exist between parents and adolescents regarding CF management, which can lead to miscommunication and challenges when transitioning from pediatric- to adult-focused CF care. Importantly, results suggest that this shift in management responsibility from parents to adolescents is complex, difficult to navigate, and requires both parents and adolescents to adapt to new roles. Understanding how families view their responsibilities over CF management is essential for medical providers to support smoother health care transition and to help adolescents maintain good self-management into adulthood. It was recommended that conversations about the health care transition process start early and occur regularly during clinic visits throughout adolescence. Special thanks to the Division 54 Adherence and Self-Management SIG trainee member, Laura Cohen, MA, for her contributions to this Kudos post!