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。
背景:针对家庭照顾者的基于网络的干预已成为一个迅速扩大的研究领域,尤其是因为越来越多的不治之症患者正在家中接受照顾。配偶也是家庭照顾者,当他们与病人同居时,他们构成了一个特别脆弱的群体,需要支持。研究表明,关于疾病的沟通很重要,但也很有挑战性。因此,本研究探讨了以家庭照顾者为目标的基于网络的心理教育干预对配偶与接受特殊家庭照顾的患者之间关于不治之症和剩余生活的沟通的影响。方法:采用前后设计。一项包含有关家庭照顾的视频和文本的干预措施被开发出来,并通过网站提供。39名配偶(67%为女性,年龄中位数:61岁)从专门的家庭护理服务机构招募。在基线和访问网站4周后,配偶完成了一份关于与患者就不治之症和剩余生活进行沟通的问卷。数据分析采用Wilcoxon符号秩检验。结果:基线与随访无明显变化。然而,大多数配偶报告说,在过去的一个月里,他们已经与病人谈论过这种疾病是无法治愈的(64%),以及这种疾病如何影响病人的身体(64%)和心理(77%)。至于关于剩余生命的沟通以及一旦患者去世后如何管理,46% -59%的人报告从未与患者进行过这些对话。结论:大多数配偶已经在基线时谈到了疾病的各个方面及其后果,表明这些问题对患有不治之症的患者的配偶照顾者很重要。然而,相当大一部分人从未和病人谈过如何处理病人去世后的事情,这表明这种对话存在障碍,需要进一步探索。未来针对家庭照顾者的基于网络的心理教育干预研究需要解决沟通方面的障碍和多样化的支持需求,特别是关于不治之症患者配偶的剩余生活。试验注册:该研究于2018.09.12首次在clinicaltrials.gov(NCT03676283)注册。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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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
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