“A True Human Interaction”: Comparison of Family Caregiver and Hospice Nurse Perspectives on Needs of Family Hospice Caregivers


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Abstract

Home hospice providers are concerned with family caregiver perceptions of the quality of care and support offered, and more research is needed to understand experiences of family caregivers and what “support” means to them. We compared perceptions of caregiver needs from family caregivers and hospice nurse care managers who participated in focus groups. Discussions were audio-recorded, transcribed, inductively coded, and qualitatively analyzed to describe patterns and themes. Caregivers described information, explanation, trust, and respect as their greatest needs. Nurses also described information as the most critical need of caregivers, followed by instruction, honesty, and reassurance. Although these concepts shared similarities, caregivers and nurses related them differently to caregiver support. Both groups focused on relationship building, suggesting 2 themes that highlighted both contrasts and mutual understanding of the importance of effective relationships: “breaking it down to build it up” and “doing to, doing for, or doing with.” Caregivers and nurses cited similar concepts as essential for successful relationships between caregivers and the hospice team, but how they described them differed, and these differences shape perceptions of support. Greater understanding of similarities and differences could inform and improve training and education programs for hospice teams.

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