Visser G, Klinkenberg M, Broese van Groenou M I, Willems D L, Knipscheer C P M, Deeg D J H
Department of Sociology and Cultural Sciences, Longitudinal Aging Study Amsterdam (LASA), Vrije Universiteit, Amsterdam, The Netherlands.
Palliat Med. 2004 Jul;18(5):468-77. doi: 10.1191/0269216304pm888oa.
This study examined the features of informal end-of-life care of older people living in the community and the association between informal care characteristics and dying at home.
Retrospective data were obtained from interviews and self-administered questionnaires of 56 persons who had been primary caregivers of older relatives in the last three months of their lives.
Results showed that informal caregivers of terminally ill older people living in the community provided a considerable amount of personal, household, and management care. Secondary informal caregivers and formal caregivers assisted resident primary caregivers less often than nonresident primary caregivers. Primary caregivers who felt less burdened, who gave personal care more intensively, and/or who were assisted by secondary caregivers, were more likely to provide informal end-of-life care at home until the time of death.
Our study showed that informal care at the end of life of older people living in the community is complex, since the care required is considerable and highly varied, and involves assistance from secondary informal caregivers, formal home caregivers as well as institutional care. Burden of informal care is one of the most important factors associated with home death. More attention is needed to help ease the burden on informal caregivers, specifically with regard to resident caregivers and spouses. Since these resident caregivers were disadvantaged in several respects (i.e., health, income, assistance from other carers) compared to nonresident caregivers, interventions by formal caregivers should also be directed towards these persons, enabling them to bear the burden of end-of-life care.
本研究探讨了居住在社区中的老年人非正式临终关怀的特征，以及非正式护理特征与在家中死亡之间的关联。
回顾性数据来自对56名在其亲属生命的最后三个月中担任主要照料者的人员的访谈和自填式问卷。
结果显示，居住在社区中的绝症老年人的非正式照料者提供了大量的个人、家庭和管理护理。与不住在家中的主要照料者相比，次要非正式照料者和正式照料者协助居住在家中的主要照料者的频率较低。负担较轻、提供更密集个人护理和/或得到次要照料者协助的主要照料者，更有可能在家中提供非正式临终关怀直至亲属去世。
我们的研究表明，居住在社区中的老年人临终时的非正式护理很复杂，因为所需护理量大且种类繁多，并且涉及次要非正式照料者、正式家庭照料者以及机构护理的协助。非正式护理负担是与在家中死亡相关的最重要因素之一。需要更多关注以帮助减轻非正式照料者的负担，特别是对于居住在家中的照料者和配偶。由于这些居住在家中的照料者与不住在家中的照料者相比在几个方面处于不利地位（即健康、收入、其他照料者的协助），正式照料者的干预也应针对这些人，使他们能够承担临终护理的负担。
