Co-producing a health advocate intervention for pediatric liver transplant recipients using human-centered design

Pediatric healthcare delivery systems are increasingly employing navigators, community health workers, and social workers to improve child and household access to healthcare and social services, with the goal of decreasing healthcare inequities. However, navigation strategies are understudied in pediatric liver transplantation. We used human-centered design methods, eliciting the perspectives of caregivers and transplant team members, to design a navigator role for pediatric liver transplantation. We enrolled 10 caregivers reporting household social risks and 6 transplant practitioners from 7 U.S. transplant centers. We conducted 8 virtual focus groups between 9/12/2023-1/31/2024 to define gaps in care and ideate on how lay navigators could mitigate those challenges. We utilized design tools to elicit stakeholders' values and preferences. We recorded the focus groups and qualitatively analyzed audio transcripts to thematically identify essential job functions. Most caregivers reported earning an annual household income <$59,000 (70.0%), living below the federal poverty line (55.6%), and experiencing financial strain (80.0%). Caregivers wanted navigators to help them (1) access community-based resources, (2) build longitudinal relationships with the healthcare team, (3) prepare them for appointments, (4) communicate with their child's school, and (5) address cultural differences between families and transplant practitioners. The transplant team wanted navigators to help caregivers (1) address families' socioeconomic resource needs, (2) coordinate appointment scheduling, and (3) facilitate cultural and language-concordant care. Using structured design methodology, we designed a prototype navigator role for pediatric liver transplant care teams. Future studies should test the effectiveness of this navigator role in improving post-transplant outcomes.