Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health, Amsterdam Public Health research institute, Expertise Center for Palliative Care, De Boelelaan, 1117, Amsterdam, Netherlands.
Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health, P.O. Box 7057, 1007, MB, Amsterdam, Netherlands.
BMC Palliat Care. 2019 May 15;18(1):41. doi: 10.1186/s12904-019-0425-6.
Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients.
METHODS/DESIGN: We used data from participants of the Longitudinal Aging Study Amsterdam (2001-2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees.
We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care.
Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation.
家庭为基础的护理网络在规模和构成上存在差异，但对于接近生命末期的人群的护理网络特征知之甚少。本研究旨在确定荷兰社区居住的老年人群中不同类型的家庭为基础的护理网络，并评估护理网络类型与护理接受者的健康状况和社会人口学特征之间的关联。
方法/设计：我们使用了来自阿姆斯特丹纵向老龄化研究（2001-2013 年）的参与者的数据，这些参与者患有慢性病或功能障碍，并且在他们最后一次访谈后的 12 个月内死亡，并且接受了家庭为基础的个人和/或家庭护理（n=146）。潜在类别分析用于对这一组具有护理需求特征的老年人群的不同临终护理网络进行建模。使用 Akaike 信息准则来确定最佳模型。使用条件推理树探讨网络类型与护理接受者特征之间的关联。
我们确定了四种护理网络类型；一种是伴侣网络（19%），其中主要由伴侣提供护理，很少有私人护理员或专业人员提供护理；一种是混合网络（25%），其中护理由子女、专业人员和/或其他家庭成员共同提供；一种是私人网络（15%），其中仅提供私人付费护理；一种是专业网络（40%），其中主要由公共付费专业人员提供护理，有时会有来自家庭或私人付费护理员的额外护理。临终护理网络与更广泛的老年人群所确定的特征相似，但与生命的最后一年相比，生命的前几年护理似乎更加密集。临终护理网络主要与年龄、教育水平和伴侣状况有关。只要没有伴侣或子女在场并能够提供护理，正式护理就会替代非正式护理。
我们的研究结果表明，个人和家庭护理在生命的最后一年可能会非常密集，特别是对于伴侣护理者。为了防止护理者负担过重，专业人员确保伴侣护理者获得足够和及时的支持以应对护理情况非常重要。
