Adolescent experiences following organ transplantation: a systematic review of qualitative studies

Abstract

Objective: To describe the experiences of adolescents who underwent organ transplantation.

Study design: We conducted a systematic review of qualitative studies that explored the experiences of adolescents who underwent organ transplantation. We searched 5 electronic databases (to week 3 of July 2008) and reference lists of relevant articles.

Results: Eighteen articles reporting the experiences of 313 adolescent organ transplant recipients were included. Five major themes were identified: (1) redefining identity (seeking normality, anxiety and disappointment, adopting a positive attitude, desiring independence); (2) family functioning (parental overprotection, sibling support); (3) social adjustment (support networks, peer rejection, maintaining schoolwork, participation in physical activities); (4) managing medical demands (assuming responsibility, dependence on caregivers, disruption to lifestyle, vigilant adherence, pain and discomfort); and (5) attitude toward the donor (obligation of gratitude, strengthened relationship, concerns about risks to donor).

Conclusions: Although transplantation offers adolescents a better chance of survival and increased freedom and energy, it poses many challenges. A multifaceted response is needed to equip adolescent transplant recipients with skills and capacities to help them achieve a sense of normality, cope with fear of death and organ rejection, gain acceptance among their peers, build confidence in learning, and resolve relationship tensions with the living donor.