Caregivers' experiences of end‐of‐life caregiving to severely ill relatives with cancer dying at home: A qualitative study in the Faroe Islands

• Published in: Scandinavian journal of caring sciences 2023-09, Vol.37 (3), p.788-796
• Main Authors: Johannesen, Elsa J. D., Timm, Helle, Róin, Ása
• Format: Article
• Language: English
• Subjects: Cancer; Caregivers; Death & dying; District nurses; end‐of‐life care; Health care; home death; Impending; Interdisciplinary aspects; Islands; Palliative care; phenomenology; Qualitative research; Relatives; Wish to die
• ISSN: 0283-9318; 1471-6712
• DOI: 10.1111/scs.13165

Background and Aim It is common among people with advanced cancer to wish to die at home, but only a few succeed in doing so. The willingness of family members to care for a person, who wants to die at home, is crucial This qualitative study aimed to provide insight into conditions that make dying at home possible in a small‐scale society and to describe family caregivers' experiences of providing end‐of‐life care in a private home setting. Methods Thirteen caregivers were interviewed, their ages varying from 39 to 84 years. 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 healthcare background, together with the district nurses, who supported the caregivers in managing the care of a dying relative at home. Being able to fulfil their relative's wish to die at home and to come closer together as a family made the caregivers feel their efforts meaningful. Conclusion Our findings point to the importance of having access to home care day and night for the caregivers to feel secure during the night‐time. As of now, this is only an option in larger towns in the Faroe Islands, which might also be the case in outskirts areas in other countries. Our findings also showed an unmet need for support to ease the mental load on caregivers. Establishing an outgoing interdisciplinary palliative team would help to increase the number of people who want to die at home and succeed in doing so by giving the caregivers emotional and advisory support.