Riding the wave: A grounded theory of transplant transition in adolescents and youth adults

Abstract

Objectives

The health care transition from pediatric to adult-focused health care for adolescent and young adult (AYA) organ transplant recipients is a critical yet understudied period. Unique challenges include supporting adherence to immunosuppressive regimens and addressing psychosocial factors that impact long-term graft survival and recipient well-being. The objective of this study was to understand how AYAs prepared for and engaged in the transition process.

Methods

Constructivist grounded theory, underpinned by symbolic interactionism, was employed to systematically gather, synthesize, analyze, and conceptualize qualitative data from in-depth interviews with 14 transplant recipients, their families, and pediatric nurses, and related online social media stories.

Results

The overall process participants experienced was that of riding the wave of change: transforming through transition, which they did through navigating four phases: (1) anticipating the impending transition, (2) losing security when transitioning to uncertainty, (3) seeking supportive anchors in the swell of transition, and (4) gaining a new sense of self.

Conclusions

AYA transplant recipients undergo numerous changes as they enter adulthood and adult-focused health care. There are many opportunities for pediatric and adult health care providers to collaborate to strengthen support for AYA recipients and their families during this critical period. Developmental and trauma-informed approaches are recommended to support successful transition.