Mental Health Experiences of Home Hospice Caregivers: A Qualitative Study of Their Lived Experiences

Background Family caregivers provide essential support to patients receiving home hospice care, often assuming complex clinical and personal care tasks that may impact caregiver mental health. Although hospice caregivers experience high prevalence of anxiety and depression, there is a lack of studies connecting these findings to caregivers’ lived experiences, coping strategies, and openness to mental health interventions during hospice care. Objective To (1) characterize hospice caregivers’ mental health symptoms and stressors, (2) identify coping strategies used during hospice, and (3) assess caregivers’ receptiveness to mental health interventions during the hospice period. Methods We conducted semi-structured interviews with caregivers who completed the Improving Home hospice Management of End-of-life symptoms (I-HoME) study. Eligible caregivers were ≥18 years, English-speaking, and provided weekly care to a home hospice patient aged ≥65. From July to October 2025, 80 caregivers were contacted, and 26 participated. Interviews were audio-recorded and analyzed using qualitative methods. Results Participants’ mean age was 58; most were female (77%) and adult children (85%), providing an average of 12 caregiving hours/day. Caregivers commonly described anxiety around caregiving responsibilities and depressive symptoms associated with impending bereavement. Key stressors included witnessing a loved one’s decline, caregiver burden, and the unpredictable end-of-life trajectory. Coping strategies included support from family/friends, hospice staff, and religion. Most caregivers expressed interest in mental health services. Conclusions Home hospice caregivers experience substantial anxiety and depressive symptoms driven by patient decline, high burden, and prognostic uncertainty, yet are receptive to flexible, individualized mental health interventions during hospice care.