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The experience of men providing at-home care for a dying loved one Bidgood, Darcee

Abstract

The primary purpose of this study was to examine the experience of men who provide care to a dying loved one at home. A qualitative research method, Interpretive Description, was used as the experience had not previously been fully examined. The sample was taken from a larger study examining the social context of home-based palliative caregiving and thus, was a secondary analysis of the original data. Analysis of the data from 13 male caregivers provided a rich description of their experience of caring for a dying loved one at home. Three main themes including (a) leading in, (b) moving into action, and (c) outcomes of male caregiving emerged from the analysis and included several sub-themes. Findings suggest men entered the caregiving role in several ways: previous knowledge of caregiving, support for them as caregivers, a lack of other desirable options, and a strong sense of duty. As they became caregivers the men moved into action by developing strategies and ways of caring for their loved one, some of which were influenced by gender. Caregiving men became informed, learned and did the required tasks, assembled needed equipment, dealt with challenges, and tried to advocate for their dying loved one and themselves. Men also had to take care of themselves, which involved getting help, setting boundaries, and taking time off. A few men were unable and unsupported to take care and had less satisfactory experiences. Several outcomes were identified as a result of caregiving, including the rewards and toll of caregiving for men, outcomes for family members who were supporting the caregiver and outcomes for the dying person. Study findings point to a need to examine the structures and services currently in place and suggest improvements that could be made to more fully support men in a palliative caregiving role.

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