Post‐Transplant Quality of Life in Pediatric Heart Transplant Recipients and Their Parents: A Qualitative Analysis With Implications for Care

BACKGROUND: Heart transplant is a life-saving treatment for children with advanced heart failure. Despite improvements in overall survival, the quality of life of both patients and their family caregivers can be negatively impacted by lifelong post-transplant care. The purpose of this study is to understand the experience of pediatric patients and their caregivers with their overall health, well-being, and quality of life after heart transplantation. METHODS: This is a qualitative study using semi-structured interviews and inductive thematic analysis, conducted at a single center in the United States. Adolescent heart transplant recipients (HTRs) and their family caregivers were included. RESULTS: Semi-structured interviews were conducted with 12 HTRs and 13 parents. Several themes appeared from the interviews: (1) heart transplant recipients experience overall better physical health after transplant, despite post-transplant complications. Both parents and HTRs (2) have difficulty reintegrating into social life and adjusting to new activity restrictions, (3) experience a reorganization of social support networks, (4) and experience high emotional burden from multiple stressors. Finally, (5) heart transplant recipients and their parents suggested greater social resources, mental health resources, and telehealth options to improve post-transplant care. CONCLUSION: Findings from this study paint a complex picture of the overall quality of life for adolescent HTRs and their parents. Clinical recommendations generated from results include leveraging care that keeps families close to home whenever possible, assessing communication preferences of the HTR and their family, validating mental health struggles for HTRs and their family, and longitudinally screening for anxiety, PTSD, and depression.