Caregiver perspectives on the everyday medical and social needs of long‐term pediatric liver transplant patients

Abstract

Using in‐depth interviews, we sought to characterize the everyday medical and social needs of pediatric liver transplant caregivers to inform the future design of solutions to improve care processes. Participants (parents/caregivers of pediatric liver transplant recipients) completed a survey (assessing socioeconomic status, economic hardship, health literacy, and social isolation). We then asked participants to undergo a 60‐min virtual, semistructured qualitative interview to understand the everyday medical and social needs of the caregiver and their household. We intentionally oversampled caregivers who reported a social or economic hardship on the survey. Transcripts were analyzed using thematic analysis and organized around the Capability, Opportunity, Motivation–Behavior model. A total of 18 caregivers participated. Of the participants, 50% reported some form of financial strain, and about half had less than 4 years of college education. Caregivers had high motivation and capability in executing transplant‐related tasks but identified several opportunities for improving care. Caregivers perceived the health system to lack capability in identifying and intervening on specific family social needs. Caregiver interviews revealed multiple areas in which family supports could be strengthened, including (1) managing indirect costs of prolonged hospitalizations (e.g., food, parking), (2) communicating with employers to support families' needs, (3) coordinating care across hospital departments, and (4) clarifying care team roles in helping families reduce both medical and social barriers. This study highlights the caregiver perspective on barriers and facilitators to posttransplant care. Future work should identify whether these themes are present across transplant centers. Caregiver perspectives should help inform future interventions aimed at improving long‐term outcomes for children after liver transplantation.

Caregiver Perceptions of Social Risk Screening in Pediatric Liver Transplantation: From the Multicenter SOCIAL-Tx Study

“…During qualitative interviews, we asked participants about perceptions of the acceptability of social risk screening. 18 Example questions included, "Would you be comfortable talking about your financial situation with your liver doctors?" and "What topics are completely off limits to discuss with your transplant doctors?"…”

“…Our previous research revealed inconsistencies in social work involvement in the posttransplant phase, which may limit the detection of new social risks. 18 No studies evaluate caregiver (ie, parents/guardians) acceptability of social risk screening in pediatric transplantation. Such data could help clinical stakeholders understand how to conduct social risk screening in the posttransplant period.…”

“…Our previous research revealed inconsistencies in social work involvement in the posttransplant phase, which may limit the detection of new social risks. 18…”

The digital determinants of liver disease

“…Telehealth has been heralded as an opportunity to mitigate health inequities by enabling patients to overcome structural barriers to seeking health care 1. Structural barriers, such as the inability to secure time off of work or high transportation costs, add additional burden to patients with liver disease2 and may contribute to observed inequities in outcomes 3. Prepandemic, telehealth was a promise rather than a reality, with robust telehealth infrastructure available at select health systems despite patient preference for telehealth options 4.…”

Caring for a child after a liver transplant: Challenges beyond medical complexity

“…Although advancements in surgical techniques, postoperative management, and immunosuppression have resulted in improved short‐term outcomes, long‐term outcomes continue to be impacted by challenges in the coordination of care between families of transplant recipients and health systems. [ 1 ] Recent publications have focused on measuring the quality of life or reducing stress among caregivers in the posttransplant care of adult recipients, yet we have limited knowledge about the perspectives of caregivers of children after LT. [ 2 ] The study by Wadhwani et al [ 1 ] is unique in its methodology and emphasis. This is the first qualitative study that explores the everyday needs of caregivers of pediatric LT recipients and identifies barriers and potential actionable interventions that are informative to the medical community.…”