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.

中文翻译：

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加拿大安大略省家庭姑息治疗癌症护理接受者的初级和非初级非正式护理的决定因素

非正式照料在照料接受者的照料中发挥着重要作用。以往的研究大多侧重于主要照顾者，而忽略了非主要照顾者的重要性。此外，对于在家庭姑息治疗的背景下提供非正式护理知之甚少。本研究的目的是检查初级和非初级非正式照料的提供及其各自的决定因素。主要照顾者承担主要照顾责任，而非主要照顾者是主要照顾者以外提供照顾的人。进行了一项纵向、前瞻性队列设计，并从 2013 年 11 月至 2017 年 8 月期间在加拿大的两个姑息治疗计划中提取数据。每两周对总共 273 名家庭姑息治疗癌症护理接受者的护理人员进行访谈，直到护理接受者死亡。结果是非正式护理的倾向和强度。使用了工具变量的回归分析。大约 90% 的主要照顾者是配偶和子女，而 53% 的非主要照顾者是其他人，而不是配偶和孩子。每个 2 周访谈期间报告的主要和非主要非正式护理的平均小时数分别为 83 小时和 23 小时。居家个人支持工作者的工作时间降低了初级护理的强度和非初级护理的可能性。家庭护理访问增加了非主要护理的倾向。初级保健和非初级保健相辅相成。独居的看护接受者接受的初级非正式看护较少。受雇的初级护理人员减少了初级护理的提供，但促进了非初级护理的参与。我们的研究具有临床实践和政策含义。鼓励采取适当、有针对性的干预措施，确保提供初级和非初级照料，平衡初级照料者的工作和照料责任，有效安排正规的居家姑息治疗服务。