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.

IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES BMC Palliative Care Pub Date : 2024-12-16 DOI:10.1186/s12904-024-01614-0
Sandra Doveson, Louise Häger Tibell, Kristofer Årestedt, Maja Holm, Ulrika Kreicbergs, Anette Alvariza, Viktoria Wallin
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Abstract

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.

Trial registration: The study was first registered on clinicaltrials.gov(NCT03676283) on 2018.09.12.

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接受专门家庭护理的不治之症患者的配偶和患者之间关于不治之症和剩余生命的沟通:以家庭护理者为目标的网络心理教育干预的效果。
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来源期刊
BMC Palliative Care
BMC Palliative Care HEALTH CARE SCIENCES & SERVICES-
CiteScore
4.60
自引率
9.70%
发文量
201
审稿时长
21 weeks
期刊介绍: BMC Palliative Care is an open access journal publishing original peer-reviewed research articles in the clinical, scientific, ethical and policy issues, local and international, regarding all aspects of hospice and palliative care for the dying and for those with profound suffering related to chronic illness.
期刊最新文献
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. Correction: Adapting the serious illness conversation guide for unhoused older adults: a rapid qualitative study. Online education in palliative care - A national exploratory multimethod study. The family talk intervention prevent the feeling of loneliness - a long term follow up after a parents life-threatening illness. Is the use of antibiotic stewardship measures in the context of specialized outpatient palliative care sensible and feasible? An interview-based study.
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