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

Abstract

Background. The social determinants of health contribute to adverse post–liver transplant outcomes. Identifying unmet social risks may enable transplant teams to improve long-term outcomes for at-risk children. However, providers may feel uncomfortable asking about household-level social risks in the posttransplant period because they might make their patients/families uncomfortable. Methods. We conducted a mixed-methods analysis of caregiver participants (ie, parents/guardians of pediatric liver transplant recipients) in the Social and Contextual Impact on Children Undergoing Liver Transplantation study to assess their perceptions of provider-based social risk screening. Participants (N = 109) completed a 20-min social determinants of health questionnaire that included questions on the acceptability of being asked intimate social risk questions. A subset of participants (N = 37) engaged in an in-depth qualitative interview to share their perceptions of social risk screening. Results. Of 109 participants across 9 US transplant centers, 60% reported financial strain and 30% reported at least 1 material economic hardship (eg, food insecurity, housing instability). Overall, 65% of respondents reported it very or somewhat appropriate and 25% reported being neutral to being screened for social risks in a liver transplant setting. In qualitative analyses, participants reported trust in the providers and a clear understanding of the intention of the screening as prerequisites for liver transplant teams to perform social risk screening. Conclusions. Only a small minority of caregivers found social risk screening unacceptable. Pediatric liver transplant programs should implement routine social risk screening and prioritize the patient and family voices when establishing a screening program to ensure successful implementation.

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

“…[13] We have previously demonstrated that caregivers perceive such screening to be acceptable. [16] Of course, screening will require transplant teams to consider how they will intervene on identified risks. Integrating alternative staffing models (eg, patient navigators or community health workers) may enable transplant teams to strengthen social care delivery while not overburdening existing staff.…”

“…Structured tools, such as the 10-question Accountable Healthcare Communities tool, may facilitate social risk screening in busy transplant clinics 13 . We have previously demonstrated that caregivers perceive such screening to be acceptable 16 . Of course, screening will require transplant teams to consider how they will intervene on identified risks.…”

“…Sharad I. Wadhwani received formal qualitative and mixed-methods coursework and has conducted 2 previous qualitative and mixed-methods studies. [10,16] He oversaw the data collection and analysis for this study. A clinical research coordinator (Alejandra Alvarado) conducted the caregiver interviews to decrease the power dynamic and facilitate open dialog.…”

“…We conducted interviews virtually (Zoom Inc.). Sharad I. Wadhwani received formal qualitative and mixed-methods coursework and has conducted 2 previous qualitative and mixed-methods studies 10,16 . He oversaw the data collection and analysis for this study.…”