SEEKING OPTIMAL, INTEGRATED PEDIATRIC MEDICAL AND SOCIAL CARE: A QUALITATIVE, PEER RESEARCHER-DRIVEN STUDY.

Abstract

Objective: To generate qualitative insights with patients, families, and community partners to catalyze nimble, aligned medical-social care responses.

Methods: This study employed qualitative and co-design methods. We partnered with 4 peer researchers who interviewed individuals living in Greater Cincinnati with recent experience as pediatric patients or caregivers of pediatric patients. Interviews assessed ways in which health care, human services, patients, families, and communities do (or do not) collaborate to provide medical-social care. Interview transcripts were independently reviewed by an analytic team inclusive of peer researchers, co-design experts, and pediatric clinicians and researchers. Findings were validated during community discussions, facilitating identification of themes and opportunity areas for intervention.

Results: Peer researchers conducted 19 interviews (14 English, 5 Spanish). Interviewees included individuals ranging from young adults (recent patients) to older adults with lived experience as caregivers of pediatric patients. Most identified as minority race/ethnicity and lived in socioeconomically-disadvantaged Cincinnati neighborhoods. Themes related to structural barriers included: 1) services are difficult to navigate; 2) medical and social care are often reactive (or non-existent) when they could be proactive; and 3) medical and social care could be more closely integrated. Themes related to human factors included: 4) medical and social service institutions are often untrustworthy; 5) diversified care teams with shared lived experiences could improve care delivery; and 6) optimal care requires empathy, clear communication, and partnership.

Conclusions: Patients, families, and community members identified themes and opportunity areas for improving medical and social care delivery. Next steps include implementation and evaluation of prototype interventions.