Perception of Reasons of Decision Making for Home Hospice, Benefits and Difficulties in Home Hospice Care by Family Caregivers

Abstract

Objective: Home hospice is one of the most important places to spend time at the end of life. It is necessary to clarify the perception of home hospice for family caregivers in order to choose home hospice. The aim of the study was to examine the perceptions of family caregivers about the reasons of decision making for home hospice care, benefits, difficulties with home hospice, and copings. Methods: Ten family caregivers who were taking care of a patient with a terminal illness at home at the time of the study participated voluntary. They participated in two interviews in the narrative approach. In the first session, they narrated reasons of decision making for home hospice, benefits, difficulties, and copings. In the second session, they narrated importance or growth in self. We analyzed narratives in the first session using qualitative analysis. This study was approved by the Ethical Board at St. Mary’s College. Results: Categories of the reasons for the decision making to undergo home hospice were “Being natural to take care of a loved one at home” or “Home hospice matching a family caregiver’s life”. Categories of benefits at home hospice were “To strengthen family’s ties” or “Both a loved one and a family spending time together”. Categories of difficulties were “Difficulty of economic problems” or “Difficulties of mental and physical symptoms”. Conclusion: We concluded that family caregivers perceived benefits and difficulties, and they could cope with difficulties, though spiritual pain remained. We need continuous support for family caregivers at home hospice.