Curtin Health Innovation Research Institute, Curtin University of Technology, Bentley WA 6102, Australia.
Soc Sci Med. 2010 Apr;70(7):1035-41. doi: 10.1016/j.socscimed.2009.11.029. Epub 2010 Jan 28.
With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005-June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carer's preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carer's preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relative's death.
在许多国家，临终关怀都是国家的重点，而家庭是主要的护理场所，因此非专业的家庭护理人员现在被视为初级保健的第一线。然而，我们对护理人员的需求了解不足，无论是在护理期间还是在丧亲期间。这项研究确定了在照顾临终患者的家庭成员时，哪些护理人员认为他们没有从卫生服务机构获得足够的支持，哪些因素影响了对支持的看法，以及卫生服务机构的支持是否不足会影响护理人员在家庭成员去世后的健康状况。与以前仅探讨临终关怀问题的调查设计不同，我们能够对西澳大利亚州的 1071 名护理人员进行了半结构化电话访谈（2005 年 8 月至 2006 年 6 月）的访谈数据进行三角剖分，并与死亡登记处、医院发病率和社区护理记录的 1071 名已故家庭成员的行政记录进行三角剖分。行政数据的加入使我们能够量化医院和社区护理服务的使用情况。数据分析包括对丧亲后最初几个月内两组护理人员的汇总统计和逻辑回归：一组是健康状况略有/明显恶化的护理人员，另一组是多数/所有日子都无法应对的护理人员。我们发现，如果护理人员认为他们没有从卫生服务机构获得足够的支持，并且死者没有在护理人员首选的地点去世，那么他们的健康状况更有可能恶化。此外，如果护理人员年龄在 60 岁或以下、女性、失去了配偶/伴侣，并且死者没有在护理人员首选的地点去世，那么他们更有可能无法应对。通过确定哪些护理人员比其他人更脆弱，可以针对特定群体提供护理人员教育和实际支持。理想情况下，丧亲支持资源应在亲人去世后的几个月内继续提供。
