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7  Caregivers´ experiences of end-of-life caregiving in a home care setting
  1. Elsa Joan Durhuus Johannesen1,
  2. Helle Ussing Timm2 and
  3. Ása Róin1
  1. 1University of the Faroe Islands, Fróðskaparsetur Føroya
  2. 2National Institute of Public Health, SDU, University of Southern Denmark


Introduction Research has shown that most people want to die at home. In the Faroe Islands, home deaths make up 12% despite limited structural conditions. There is only home care during night hours in the capital and larger villages and an established palliative team do not have an outgoing function. The caring task relies heavily on family members.

Aims The aim was to provide inside into conditions that make home death possible in a small-scale society and describe family caregivers’ experiences of providing end-of-life care in a private home setting.

Methods The study is qualitative. A phenomenological approach, inspired by Giorgi, was applied.

Results Two essential structures captured the experience of caring at home until death: `Managing end-of-life care´ and `meaningfulness in a time of impending death´. It was mainly the family and especially family members with a health professional background and the district nurses who supported the caregivers in managing end-of-life care. By fulfilling their relative’s wish to die at home, the caretakers found their caring task meaningful and experienced a closeness among family members during the palliative course. For caregivers in areas with no home care during night hours, this caused caregivers to feel insecure, especially about being able to relieve their relative’s pain sufficiently.

Conclusions The willingness among family members to conduct end-of-life care for a relative is great despite limited structural conditions to support them. A way to increase the number of home deaths, could be if home care around the clock nationwide and an outgoing palliative care team were established.

Impact The study can be used to set further focus on the need to establish structured home care around the clock nationwide, and for the palliative care team to have an outgoing function.

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