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Communication about incurable illness and remaining life between spouses and patients with incurable illness receiving specialized home care: Effects of a family caregiver-targeted web-based psycho-educational intervention
Marie Cederschiöld University, Department of Health Care Sciences. Sophiahemmet University, Sweden.ORCID iD: 0000-0002-8780-5922
Marie Cederschiöld University, Department of Health Care Sciences. Karolinska University Hospital, Sweden.
Linnaeus University, Sweden; Region Kalmar County, Sweden.
Marie Cederschiöld University, Department of Health Care Sciences. Sophiahemmet University, Sweden.ORCID iD: 0000-0003-2074-5985
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2024 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 23, no 1, p. 1-11, article id 282Article in journal (Refereed) Published
Abstract [en]

Background: Web-based interventions targeted at family caregivers has become a quickly expanding research field, none the least since a growing number of patients with incurable illness are being cared for at home. Spouses, who are also family caregivers, constitute an especially vulnerable group in need of support when they are cohabitating with the ill patient and research shows that communication regarding the illness is important, yet challenging. This study therefore explored effects of a family caregiver-targeted web-based psycho-educational intervention on communication about incurable illness and remaining life between spouses and patients receiving specialized home care.

Methods: The study had a pre-post-design. An intervention containing videos and texts about family caregiving was developed and made accessible via a website. Thirty-nine spouses (67% women, median age: 61) were recruited from specialised home care services. At baseline, and after 4 weeks of access to the website, spouses completed a questionnaire about communication with the patient regarding incurable illness and remaining life. Data was analyzed using the Wilcoxon signed-rank test.

Results: No significant changes were found between baseline and follow-up. Most spouses did, however, report having talked with the patient about the illness being incurable (64%) and how the illness affected the patient physically (64%) and psychologically (77%) during the past month already at baseline. Regarding communication about the remaining life and how to manage once the patient had passed away, 46–59% instead reported not having had these conversations with the patient ever.

Conclusions: A majority of the spouses had talked about aspects of the illness and its consequences already at baseline, indicating that these matters are important to spousal caregivers of patients with incurable illness. However, a sizeable portion had not ever talked to the patient about how to manage once the patient had passed away, suggesting there are barriers to such conversations that need to be further explored. Future research on web-based psychoeducational interventions targeted at family caregivers need to address barriers and the diverse support needs regarding communication, especially about the remaining life, among spouses of patients with incurable illness.

Place, publisher, year, edition, pages
2024. Vol. 23, no 1, p. 1-11, article id 282
Keywords [en]
Palliative care, Family caregivers, Web-based support, EHealth/digital support, Spouses, End of life, Communication
National Category
Nursing Palliative Medicine and Palliative Care
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
URN: urn:nbn:se:esh:diva-11207DOI: 10.1186/s12904-024-01614-0ISI: 001379546000001PubMedID: 39681862OAI: oai:DiVA.org:esh-11207DiVA, id: diva2:1926100
Funder
Swedish Research Council, 2021-00860Swedish Cancer Society, 21 1385 PjSophiahemmet UniversityAvailable from: 2025-01-10 Created: 2025-01-10 Last updated: 2025-09-22Bibliographically approved

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Doveson, SandraHäger Tibell, LouiseHolm, MajaKreicbergs, UlrikaAlvariza, AnetteWallin, Viktoria

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