Transition to Self-Management after Pediatric Heart Transplant

Abstract

Context Little is known about adolescent transition to self-management after heart transplant. This gap in knowledge is critically important because the consequences of poor self-management are costly and life-threatening, often resulting in nonadherence, rejection, repeated hospitalizations, and poor quality of life. Objective To explore how adolescents and parents perceive their roles in self-management, and how adolescents integrate self-management into their daily lives and navigate the transition from parent-dominated to self-management. Design Qualitative descriptive design, using online focus groups. Setting Online focus groups using itracks, an online qualitative software program. Participants A purposive sample of 4 adolescents, 13 to 21 years old, who were at least 6 months posttransplant, and of 6 parents of adolescent heart transplant recipients. Results Several parallel themes emerged from the parent and adolescent online focus groups. Managing medications was the predominant theme for both parents and adolescents. For the remaining themes, parents and adolescents expressed similar ideas that were categorized into parallel themes, which included staying on top of things/becoming independent, letting them be normal/being normal, and worries and stressors. Conclusions The transition to self-management after heart transplant was a clear goal for both parents and adolescents. The transition is a shared responsibility between parents and adolescents with a gradual shift from parent-directed to self-management. The process of transition was not linear or smooth, and in several instances, parents described efforts to transfer responsibility to the adolescent only to take it back when complications arose. Additional research with a larger sample is needed in order to fully understand adolescent heart transplant recipients' transition to self-management.