Background: Many children and adolescents who undergo solid organ transplants (SOT) develop post-traumatic stress (PTS) symptoms. Despite its prevalence and strong association with long-term impairments in quality of life, PTS is often overlooked as a major co-morbidity in many transplant programs. To address this unmet need, the purpose of this study was to explore the factors that impede or facilitate awareness of PTS, access to resources, and readiness to engage with mental health services.
Methods: Separate semi-structured interviews (N = 17) were conducted with pediatric SOT recipients between the ages of 12 and 18, and a parent/caregiver. Descriptive content analysis was used to uncover emerging themes from the interviews that explored: (1) awareness and management of PTS symptoms; (2) timelines surrounding PTS symptom awareness and resource-seeking; (3) facilitators to PTS symptom awareness; (4) barriers to PTS symptom awareness; (5) information seeking; and (6) areas for improvement in the current content and availability of resources.
Results: Emotional and physical impacts of SOT were identified for pediatric SOT recipients and their parents/caregivers. The majority of parent/caregiver and youth participants preferred to learn about the risk of PTS symptoms and available support resources before the transplant. Participants recommended several improvements and additional resources to support PTS, which centered around increasing access to mental health care, counseling and therapy, patient-centered support, and advocacy.
Conclusions: By exploring the personal experiences and perspectives of pediatric SOT recipients and their parents/caregivers, this work can be used to improve the accessibility and quality of mental health supports for PTS.
Keywords: child; heart transplant; kidney transplant; lived experience; mental health support; post‐traumatic stress; qualitative.
© 2025 The Author(s). Pediatric Transplantation published by Wiley Periodicals LLC.