Ansvarlig og avhengig – Pårørendes erfaringer med forestående død i hjemmet : Responsible and dependent – Relatives’ experience with expected death at home
Journal article, Peer reviewed
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Original versionKlinisk Sygepleje. 2016, 30 (2), 87-100. 10.18261/issn.1903-2285-2016-02-03
Background: Research and white papers highlight the possibility for patients in the palliative phase to stay at home despite a high level of symptom burden. Purpose: This study describes the experiences in relatives when cancer patients want to spend the last days of their lives at home. Methods: The study has a qualitative design and in-depth interviews were performed to gather data. Results: The sample consists of seven individual interviews with family caregivers representing different positions in the family. Four main themes emerged: (i) valuable time at home for the parties involved, (ii) being available all day and night, (iii) relief of the patients' symptoms and fulfilment of their desires, (iv) experiences and follow-up from the health care system. A synthesis reveals the concepts responsibility and dependence. Conclusion: relatives dealing with palliative care at home have a strong engagement and need stamina to handle complex physical and psychological demands and suffering. Additionally, relatives in this study describe a high level of responsibility as well as being dependent on support from the health care system.