School of Humanities and Social Sciences, University of Newcastle, Newcastle upon Tyne, UK.
Palliat Med. 2013 Jul;27(7):608-15. doi: 10.1177/0269216313483664. Epub 2013 Apr 15.
Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends.
This population study aims to define the people who actually provide care at the end of life.
SETTING/PARTICIPANTS: A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and 'expected' death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence.
People of all ages indicated they provided 'hands on' care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer.
This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on 'next-of-kin' status in research will not identify them.
大多数姑息治疗研究都依赖于配偶或成年子女对护理人员的报告。一些最近的临床报告指出了其他家庭成员和朋友提供的帮助。
本人群研究旨在确定在生命末期实际提供护理的人员。
设置/参与者：南澳大利亚的一项研究在 7 年期间每年进行一次随机健康人群调查（n=23706）。从自我认同的身边有人去世并在过去 5 年内“预计”死亡的人群（n=7915）中抽取样本。数据按性别、10 年年龄组、社会经济地位和居住地区的人口规范进行标准化。
各个年龄段的人都表示他们在生命末期提供了“实际”护理。大家庭成员（非直系亲属）和朋友占已确定的实际护理人员的一半以上（n=1133/2028；55.9%）。这些人来自成年社区的整个年龄范围。他们提供护理的时间比这组护理人员要短。有大家庭或朋友提供护理的人，与有配偶护理人员相比，更有可能在家中接受支持死亡。
这个由主要不为医疗团队所关注的大量护理人员组成的网络提供了大部分护理。临终关怀和姑息治疗服务需要制定特定的方法来识别和参与这一组人，以确保他们在角色中得到足够的支持。在研究中依赖“近亲”身份将无法识别他们。
