Vigilant at the End of Life: Family Advocacy in the Nursing Home
Vigilant at the End of Life: Family Advocacy in the Nursing Home
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DOI：
10.1089/jpm.2009.0398
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发表时间：
2010-05-01
影响因子：
2.8
通讯作者：
Welch, Lisa C.
中科院分区：
文献类型：
--
作者：
Shield, Renee R.;Wetle, Terrie;Welch, Lisa C.
背景：越来越多的美国人死在养老院。鲜为人知的是谁死在nursinghomes.Methods：作者进行了54定性的电话采访的亲密的家人或朋友的个人谁花了至少48小时，在过去一个月的生活在一个养老院的家庭成员的角色和经验。受访者早些时候参加了一项全国性调查，发现1578名死者中有587人（37.2%）接受了临终护理。在定性访谈中，受访者描述了生命的最后一年，重点是养老院的经验。访谈进行了分析，由一个多学科的团队，以确定关键主题的关注areas of concern.Results：一个重要的访谈主题揭示家庭往往觉得有必要倡导他们的垂死的相对，因为低期望或经验与质量差的养老院护理。他们注意到工作人员没有充分告知他们在死亡过程中会发生什么。受访者报告说，他们自己提供的照顾，有时需要与工作人员合作的负担和满足。访谈还确定了临终关怀影响家庭的方式，包括帮助减轻家庭负担。结论：当那些接近垂死居民的人对基本护理感到担忧，并且不了解垂死过程时，临终关怀宣传的紧迫性会增加。加强沟通，在生命结束时为家庭做好准备，以及更好地了解临终关怀，可能会增加家庭对养老院护理的信任，改善对垂死居民的护理，并有助于减轻家庭负担。
Background: Increasing numbers of Americans die in nursing homes. Little is known about the roles and experiences of family members of persons who die in nursing homes.Methods: The authors conducted 54 qualitative telephone interviews of close family or friends of individuals who had spent at least 48 hours in the last month of life in a nursing home. Respondents had earlier participated in a national survey that found 587 of 1578 decedents (37.2%) received end-of-life nursing home care. In qualitative interviews respondents described the last year of life, focusing on the nursing home experience. Interviews were analyzed by a multidisciplinary team to identify key themes of areas of concern.Results: An important interview theme revealed families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care. They noted staff members who did not fully inform them about what to expect in the dying process. Respondents reported burden and gratification in care they themselves provided, which sometimes entailed collaboration with staff. Interviews also identified ways hospice care impacted families, including helping to relieve family burden.Conclusions: End-of-life advocacy takes on increased urgency when those close to the dying resident have concerns about basic care and do not understand the dying course. Enhancing communication, preparing families at the end of life, and better understanding of hospice are likely to increase family trust in nursing home care, improve the care of dying residents, and help reduce family burden.