The following is a summary of “Black Caregivers’ Symptom Management, Cultural, and Religious Experiences With Home Hospice Care,” published in the April 2023 issue of Pain Management by Park, et al.
Informal caregivers from the Black or African American (Black/AA) community face a high risk of caregiver burden due to increased caregiving responsibilities and unmet needs. However, there was a lack of research on these caregivers’ challenges after enrolling their loved ones in hospice care. For a study, researchers sought to address the knowledge gap by employing qualitative methods to gain insights into the experiences of Black/AA caregivers about symptom management, cultural considerations, and religious challenges during home hospice care.
Qualitative analysis was conducted on data obtained from small group discussions involving 11 bereaved Black/AA caregivers whose loved ones received home hospice care.
Caregivers faced significant difficulties in managing patients’ pain, addressing issues of appetite loss, and witnessing a decline in health near the end of life. Many caregivers felt their cultural needs, including language and food preferences, were not adequately considered. Moreover, mental health stigma prevented care recipients from openly discussing their concerns and seeking appropriate resources. Caregivers tended to rely on their religious networks rather than utilizing the services provided by hospice chaplains. Despite experiencing an increased burden during this phase of caregiving, caregivers expressed overall satisfaction with the hospice experience.
The findings underscored the need for tailored approaches to address mental health stigma within the Black/AA community and alleviate caregiver distress related to end-of-life symptoms. Hospice spiritual services should be designed to complement caregivers’ existing religious networks. Future qualitative and quantitative studies should further examine the clinical implications of these findings on patient, caregiver, and hospice outcomes.