Understanding the unique needs of African American/Black caregivers.

Abstract

220 Background: A lack of culturally responsive resources, systemic bias in the healthcare system, and a lack of understanding of culture means African American/Black (AAB) caregivers can face additional barriers to providing care. To address this enormous gap, the American Cancer Society (ACS) is leading the charge in the way support is delivered to AAB caregivers through qualitative inquiry to better understand their unique needs and challenges. Methods: Six focus groups with AAB caregivers (n=32) were conducted using the Zoom online platform to assess a) their perceptions of providing care to a person with cancer, b) their unmet needs, and c) their preferences for how best to meet their needs. NVivo 12 was used to store, code, query, and organize the data. Deductive codes were derived based on the research questions for the study. Data was also inductively coded to identify the categories and themes that emerged that did not fit into the research questions. Results: Participants were mostly female (90%), ≥ 55 years old (64%), employed full time (54%), and providing care to their mother with cancer (42%). The primary unmet need was related to their relationship with their loved one’s healthcare providers. Major themes identified: negative healthcare system perceptions, racism and discrimination, limited access to medication due to cost, provider insensitivity and dismissiveness, medical mistrust, and lack of informational resources. Caregivers highlighted the desire for timely information from the provider about the cancer diagnosis to better assist with treatment decisions. Early navigator involvement was also requested to assist them in advocating for the patient’s needs as well as their own. Conclusions: Caregivers are a critical part of the healthcare team. Providers should strive to deliver culturally competent care that acknowledges and respects the experiences, values, and beliefs of AAB caregivers. Themes that emerged from this study were used to develop topics for a 6-part ECHO Series aimed to address AAB caregiver needs at the system level. ACS will leverage these findings to develop information and resources targeted to AAB caregivers.