Caregiver perspectives on the continuum of social needs care: A qualitative study in pediatric primary care.

Abstract

Background: In response to new regulatory requirements, health systems are scaling up or implementing new health-related social needs (HRSN) screening programs.

Objectives: To explore caregivers' experiences with and preferences for (1) HRSN screening, (2) electronic medical record (EMR) documentation of HRSN, and (3) community resource referral mechanisms including the use of a patient-facing, web-based community resource platform.

Methods: Focus groups and semi-structured interviews were conducted with caregivers of pediatric patients with the preferred language of English or Spanish receiving primary care in an academic practice in Baltimore, Maryland. Data collection occurred until thematic saturation was reached, and qualitative analysis followed an iterative thematic analysis approach.

Results: Seventy-five caregivers participated between June 2023 to February 2024. Themes included: (1) approval and perceived value of universal and frequent screening, with varied preferences in screening modality; (2) fear of negative repercussion and stigma surrounding screening process and EMR documentation; (3) emphasis on importance of transparency, trust and responsiveness when navigating HRSN with families; (4) preference for in-person assistance; (5) value of an online navigation tool as a supplemental resource with potential to enhance autonomy and real-time equitable access to resources; and (6) hesitancy in receiving resources due to sense of altruism.

Conclusion: Qualitative findings highlight the nuanced nature of HRSN screening, documentation, and referral in pediatric primary care. Practices and health systems should engage caregivers in these processes to ensure approaches are culturally responsive and recognize the feeling of vulnerability some face in disclosing unmet social needs.