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Nurses’ challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study
Mälardalens universitet, Akademin för hälsa, vård och välfärd, Hälsa och välfärd. (Care, Health and Recovery)
Mälardalens universitet, Akademin för hälsa, vård och välfärd, Hälsa och välfärd. (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.
Mälardalens universitet, Akademin för hälsa, vård och välfärd, Hälsa och välfärd. (Care, Health and Recovery)ORCID-id: 0000-0001-5391-623X
2023 (Engelska)Ingår i: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 18, nr 1, artikel-id 2238984Artikel i tidskrift (Refereegranskat) 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.

Ort, förlag, år, upplaga, sidor
2023. Vol. 18, nr 1, artikel-id 2238984
Nyckelord [en]
ALS, caregivers, family, home care nursing, nurses experience, palliative care, qualitative, relatives
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Forskningsämne
vårdvetenskap
Identifikatorer
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
Tillgänglig från: 2023-08-17 Skapad: 2023-08-17 Senast uppdaterad: 2023-12-04Bibliografiskt granskad

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Beyermann, AlexandraAsp, MargaretaSöderman, Mirkka

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