• Taeyoung Park, Danetta H Sloan, Dulce M Cruz-Oliver, Manney Cary Reid, Sara Czaja, Ronald D Adelman, Ritchell Dignam, and Veerawat Phongtankuel.
• Division of Geriatrics and Palliative Medicine (T.P., M.C.R., S.C., R.D.A., V.P.), Department of Medicine, Weill Cornell Medicine, New York, New York, USA. Electronic address: tap4003@med.cornell.edu.
• J Pain Symptom Manage. 2023 Aug 1; 66 (2): 116122.e1116-122.e1.

ContextInformal Black or African American (Black/AA) caregivers are at high risk for caregiver burden due to both greater caregiving responsibilities and unmet needs. However, there has been minimal research on the challenges Black/AA caregivers face after hospice enrollment.ObjectivesThis study seeks to address this knowledge gap by applying qualitative methods to understand Black/AA caregivers' experiences around symptom management, cultural, and religious challenges during home hospice care.MethodsData from small group discussions with 11 bereaved Black/AA caregivers of patients who received home hospice care were qualitatively analyzed.ResultsCaregivers struggled most with managing patients' pain, lack of appetite, and decline near end of life (EoL). Cultural needs (e.g., knowing their language, having familiarity with foods) were perceived as not on top of mind for many Black/AA caregivers. However, there was a concern of stigma around mental health preventing care recipients from sharing their mental health concerns and seeking resources. Many caregivers relied on their personal religious networks rather than services provided by hospice chaplains. Lastly, caregivers reported increased burden during this phase of caregiving but were satisfied with the overall hospice experience.ConclusionOur results suggest that tailored approaches that target mental health stigma in the Black/AA community and reduce caregiver distress around end of life symptoms may improve hospice outcomes among Black/AA hospice caregivers. Hospice spiritual services should consider offering services complementary to caregivers' existing religious networks. Future qualitative and quantitative studies should examine the clinical implications of these results in terms of patient, caregiver, and hospice outcomes.Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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