JMIR Publications

ABSTRACT

Background:

Cancer care often requires long-term commitment by patients and caregivers that can be difficult to manage, particularly among African-American populations facing significant health disparities with cancer mortality in addition to higher levels of stigma and discrimination in healthcare environments. Limited research focuses on the needs of African-American cancer caregivers and how to promote supportive behaviors for improved health outcomes.

Objective:

This research helps explicate the needs of African-American caregivers and also offers insight into provider perspectives on ideas for comprehensive care progress to improve patient support and outcomes.

Methods:

A purposive sample of 12 cancer providers who frequently work with African-American communities participated in online semi-structured interviews about experiences supporting African-American cancer caregivers. Data were analyzed by coders using a condensed thematic analysis plus Atlas.ti software to confirm themes and extract quotes.

Results:

Data show unmet needs at the (1) practical, (2) social emotional, and (3) cultural levels for African-American caregivers. To address these, providers suggested multi-level ideas across four themes: (1) acknowledgement of caregiving as formal work with adequate compensation and support, (2) integration of caregivers into a core multi-disciplinary care team alongside providers and navigators, (3) recognition of diverse cultural and social assets as key outcomes for success, (4) solidifying the role of the provider as the hub for change and improvements within the care system.

Conclusions:

Clinicians handily identify a range of unmet needs among African-American caregivers and offer practice-based suggestions for improved support that go beyond the individual level to focus on structural and transformative-systems change possibilities. This novel approach to understanding caregiver needs offers ideas for how clinical providers can recognize the impact of caregiving, build caregivers into the support team, work to engage with social and cultural opportunities for support, and bolster how providers can lead institutional and systemic progress. Clinical Trial: n/a