Caregivers’ and providers’ perspectives of social and medical care after pediatric liver transplant: Results from the multicenter SOCIAL-Tx study

Abstract

Background: Disparities exist in pediatric liver transplant (LT). We characterized barriers and facilitators to providing transplant and social care within pediatric LT clinics. Methods: This was a multi-center qualitative study. We oversampled caregivers reporting household financial strain, material economic hardship, or demonstrating poor health literacy. We also enrolled transplant team members. We conducted semi-structured interviews with participants. Caregiver interviews focused on challenges addressing transplant and household needs. Transplant provider interviews focused on barriers and facilitators to providing social care within transplant teams. Interviews were recorded, transcribed, and coded according to the Capability, Opportunity, Motivation-Behavior model (COM-B). Results: We interviewed 27 caregivers and 27 transplant team members. Fifty-two percent of caregivers reported a household income<$60,000 and 62% reported financial resource strain. Caregivers reported experiencing, (1) high financial burdens after LT, (2) added caregiving labor that compounds the financial burden, (3) dependency on their social network’s generosity for financial and logistical support, and (4) additional support being limited to the perioperative period. Transplant providers reported, (1) relying on the pre-transplant psychosocial assessment for identifying social risks, (2) discomfort initiating social risk discussions in the post-transplant period, (3) reliance on social workers to address new social risks, and (4) social workers feeling overburdened by quantity and quality of the social work referrals. Conclusions: We identified barriers to providing effective social care in pediatric LT, primarily a lack of comfort assessing and addressing new social risks in the post-transplant period. Addressing these barriers should enhance social care delivery and improve outcomes for these children.