Characterizing Barriers to Living Donor Liver Transplantation for Pediatric Recipients: Qualitative Results from the SOCIAL-Tx Study

Abstract Objective To characterize barriers and facilitators influencing caregiver decision-making regarding living donor liver transplantation for children with end-stage liver disease. Study design This qualitative study used semi-structured, in-depth interviews conducted between May 2023 and March 2025 with caregivers of pediatric liver transplant recipients enrolled in the Social & Contextual Impact on Children Undergoing Liver Transplantation study cohort. Interviews were recorded and professionally transcribed, then independently coded by 3 reviewers using a codebook informed by the Capability, Opportunity, Motivation - Behavior model, an implementation science framework. Codes were compared and reconciled to generate themes. Results Eighteen caregivers participated; 50% reported household incomes <150% of the federal poverty level. Seven themes emerged: (1) insufficient time to comprehend transplant options, (2) perceived or actual lack of eligible donors in caregiver's social network, (3) concern about donor health consequences, (4) challenge of being both a caregiver and donor, (5) discordance between discomfort asking others to donate and response received, (6) limited knowledge about differences between whole and split liver, and (7) the appeal of flexible surgical scheduling offered by living donor liver transplantation. These themes highlight the interplay between cognitive, social, and practical factors influencing pursuit of living donation. Conclusions Strategies to support decision making about living donor liver transplantation should include counseling about the procedure's benefits early in the transplant evaluation process, helping identify non-directed donors and reducing the caregiving burden during the donor recovery period. Such efforts should prioritize under-resourced families to enhance equitable outcomes for children with end-stage liver disease.