Health Care Providers’ Perceptions of Unmet Needs Among African American Cancer Caregivers: Qualitative Investigation Among US Medical Professionals

TL;DR

This study explores the unmet needs of African American cancer caregivers as seen by healthcare providers and suggests systemic changes to better support them.

Contribution

The paper introduces a provider-focused approach to identify unmet needs and structural solutions for supporting African American cancer caregivers.

Findings

Providers identified practical, social-emotional, and cultural unmet needs among African American cancer caregivers.

Recommendations included formal recognition of caregiving work, integrating caregivers into care teams, leveraging cultural assets, and provider training in cultural humility.

Systemic changes like policy reform and institutional trust-building are needed to address disparities in caregiver support.

Abstract

African American caregivers are more likely to be sole unpaid caregivers, spend more hours on caregiving tasks, and receive less external support compared to White caregivers; yet, limited research focuses on their specific needs. Even less attention has been paid to health care provider perspectives on how to better support this population, despite providers’ critical role in connecting caregivers to resources and implementing systems-level changes.

This study aimed to understand health care providers’ experiences supporting African American cancer caregivers and to identify actionable recommendations for improving care. Specific objectives were to (1) identify unmet needs that providers observe among African American cancer caregivers, (2) explore barriers preventing these needs from being met, and (3) elicit provider recommendations for interventions to enhance caregiver support.

Between January and May 2023, we conducted semistructured online interviews with 12 health care providers across 7 US states. Providers were purposively sampled from facilities serving patient populations with ≥20% African American representation. Participants included physicians (n=7), social workers (n=2), nurses (n=2), and other providers (n=1), with 58% identifying as Black or African American and 83% having more than 15 years of clinical experience. Interviews lasted ~60 minutes and were conducted via Zoom (Zoom Video Communications, Inc) with audio recording. Data were analyzed using condensed thematic analysis guided by the McKillip needs assessment framework and socioecological model.

Thematic analysis revealed 2 overarching categories of findings. First, providers identified three types of unmet needs among African American cancer caregivers (1) practical needs, including transportation, financial constraints, and competing family obligations; (2) social-emotional needs, including stress, burnout, and fear; and (3) cultural barriers, including medical mistrust rooted in historical trauma, “superhero Black woman” expectations, tensions between faith and medical treatment, and stigma around mental health. Second, providers offered four themes of recommendations for transformational change: (1) formal acknowledgment and compensation of caregiving as essential work; (2) integration of caregivers as equal members of multidisciplinary care teams; (3) recognition and leveraging of cultural assets, including strong family networks, community values, and faith-based support; and (4) strengthening providers’ roles as hubs for individual-level support and systems-level advocacy.

Health care providers readily identify substantial unmet needs among African American cancer caregivers and offer practice-based recommendations that extend beyond individual-level support to emphasize structural and systems transformation. Findings suggest that meaningful improvement requires multilevel intervention. This includes policy changes to formalize and compensate caregiving work, organizational restructuring to integrate caregivers into care teams, provider training in cultural humility and asset-based approaches, and institutional commitment to addressing historical trauma and rebuilding trust with African American communities. This novel provider-focused approach offers actionable pathways for clinical settings to reduce disparities and improve outcomes for African American cancer caregivers and the patients they support.