School of Economics and Management, Beijing Jiaotong University, Haidian District, Beijing, China.
Institute of Health Policy, Management and Evaluation, University of Toronto, Health Sciences Building, Toronto, ON, Canada.
Health Soc Care Community. 2021 Nov;29(6):e405-e419. doi: 10.1111/hsc.13366. Epub 2021 Mar 24.
Informal care plays an important role in the care of care-recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non-primary caregivers. Moreover, little is known about the provision of informal care in the context of home-based palliative care. The purpose of this study was to examine the provision of primary and non-primary informal care-giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non-primary caregivers are those other than the primary caregiver who provide care-giving. A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home-based palliative care cancer care-recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care-giving. Regression analysis with instrumental variables was used. About 90% of primary caregivers were spouses and children, while 53% of non-primary caregivers were others rather than spouses and children. The average number of hours of primary and non-primary informal care-giving reported for each 2-week interview period was 83 hr and 23 hr, respectively. Hours of home-based personal support workers decreased the intensity of primary care-giving and the likelihood of non-primary care-giving. Home-based nursing visits increased the propensity of non-primary care-giving. The primary care-giving and non-primary care-giving complement each other. Care recipients living alone received less primary informal care-giving. Employed primary caregivers decreased their provision of primary care-giving, but promoted the involvement of non-primary care-giving. Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non-primary care-giving, to balance the work of the primary caregivers and their care-giving responsibility, and to effectively arrange the formal home-based palliative care services.
非专业护理人员在护理接受者的护理中发挥着重要作用。大多数先前的研究都集中在主要护理人员身上，而忽略了非主要护理人员的重要性。此外，对于家庭姑息护理背景下的非专业护理服务的提供情况知之甚少。本研究旨在探讨主要和非主要非正式护理服务的提供情况及其各自的决定因素。主要护理人员承担主要的护理责任，而非主要护理人员是指除主要护理人员以外提供护理服务的人员。采用纵向、前瞻性队列设计，数据来自加拿大的两个姑息治疗项目，时间为 2013 年 11 月至 2017 年 8 月。共对 273 名接受家庭姑息护理的癌症患者的护理人员进行了为期两周的访谈，直至护理对象死亡。结果是非正式护理服务的倾向和强度。使用带有工具变量的回归分析。大约 90%的主要护理人员是配偶和子女，而 53%的非主要护理人员是配偶和子女以外的其他人。每个 2 周访谈期报告的主要和非主要非正式护理人员的平均小时数分别为 83 小时和 23 小时。家庭个人支持工作人员的工作时间减少了主要护理人员的护理强度和非主要护理人员的护理可能性。家庭护理访问增加了非主要护理人员的护理倾向。主要护理和非主要护理相辅相成。独居的护理接受者接受的主要非正式护理较少。有工作的主要护理人员减少了他们的主要护理服务，但促进了非主要护理人员的参与。我们的研究具有临床实践和政策意义。鼓励采取适当和有针对性的干预措施，以确保主要和非主要护理服务的提供，平衡主要护理人员的工作及其护理责任，并有效地安排家庭姑息护理服务。
