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Nurses’ challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. (Care, Health and Recovery)
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. (Care, Health and Recovery)ORCID iD: 0000-0002-3307-6779
Palliative Research Centre, Department of Health Care Sciences, Marie Cederschiöld University, Stockholm, Sweden; Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. (Care, Health and Recovery)ORCID iD: 0000-0001-5391-623X
2023 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 18, no 1, article id 2238984Article in journal (Refereed) Published
Abstract [en]

Purpose: Being a family member to someone who has amyotrophic lateral sclerosis (ALS) is demanding and often requires sacrificing a lot. Family members can experience fatigue, anxiety, guilt and need support. The aim was to explore registered nurses’ (RNs’) experiences of providing support to the families of patients with ALS within specialized palliative home care (SPHC).

Methods: A qualitative explorative design. Interviews were conducted with RNs (n = 11) from five SPHCs in Sweden and analysed using qualitative content analysis.

Results: The results emerged in the following categories:”To support in an increasingly difficult everyday life”, based on the sub-categories: “Creating a trusting relationship”, “Balancing between the needs of patients and their families”, and “Sharing knowledge about dying to the families”;”To support in emotionally challenging situations”, based on the sub-categories: “Harbouring family members’ difficult feelings”, “Providing support even though the situation is unpleasant” and “Being able to give support by receiving confirmation and support from others”.

Conclusions: RNs working in SPHC have an important role in providing support in several ways to the families of patients with ALS, through facilitating their everyday life and giving emotional support when needed, based on the needs of both patients and the families.

Place, publisher, year, edition, pages
2023. Vol. 18, no 1, article id 2238984
Keywords [en]
ALS, caregivers, family, home care nursing, nurses experience, palliative care, qualitative, relatives
National Category
Nursing
Research subject
Care Sciences
Identifiers
URN: urn:nbn:se:mdh:diva-64038DOI: 10.1080/17482631.2023.2238984ISI: 001032784700001PubMedID: 37490576Scopus ID: 2-s2.0-85165631253OAI: oai:DiVA.org:mdh-64038DiVA, id: diva2:1789107
Available from: 2023-08-17 Created: 2023-08-17 Last updated: 2023-12-04Bibliographically approved

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Beyermann, AlexandraAsp, MargaretaSöderman, Mirkka

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