Chow Amy Yin Man, Zhang Anna Yan, Wong Kelly Tsz Ching, Chan Iris Kwan Ning, Fordjour Genevieve Ataa, Xiong Xuechen, Lou Vivian Waiqun, Chan Cecilia Lai Wan
Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong SAR, China.
Jockey Club End-of-life Community Care Project, Faculty of Social Sciences, The University of Hong Kong, Hong Kong SAR, China.
Am J Hosp Palliat Care. 2024 Aug 8;42(8):10499091241268992. doi: 10.1177/10499091241268992.
Family caregivers (FCs) play an essential role in delivering home-based end-of-life care. However, little is known about FCs'' experiences when undertaking this role. The integrated community end-of-life support team (ICEST) is a needs-driven, home-based, family-centered care model in Hong Kong. We evaluated its effects on FCs and compared outcomes for spouses and adult children. A multicenter pre-post-test study was conducted. Eligible participants were primary FCs of terminally ill older adults (age ≥ 60) who had a life expectancy of ≤12 months. Baseline (T) and three-month post-intervention (T) outcome measures included FCs'' caregiving strain, psychological distress, perceived external support, intimate relationships, and communications regarding care planning. A sample of 628 FCs were enrolled at T and 40.0% completed the T assessments. The ICEST model was effective in reducing caregiving strain, depression, and worries about patients, whilst there were improvements in agreement about care planning with patients, and perceived external supports. At T, spouses held more negative perceptions of caregiving and faced fewer adjustment demands than adult children. Compared with spouses, adult children were more intimate with patients. Between T and T, spouses experienced a greater reduction in worries about patients, than adult children. The ICEST model contributed to better outcomes, individually and relationally, for FCs, regardless of relationship type. Spouses and adult children faced different challenges while delivering home-based end-of-life care. Effective interventions should modify the negative perceptions of caregiving in spousal caregivers and enable adult children to deal with multiple tasks and complex expectations.
家庭照顾者在提供居家临终关怀方面发挥着至关重要的作用。然而，对于家庭照顾者承担这一角色时的经历，我们知之甚少。综合社区临终关怀支持团队（ICEST）是香港一种以需求为导向、居家、以家庭为中心的护理模式。我们评估了其对家庭照顾者的影响，并比较了配偶和成年子女的结果。进行了一项多中心前后测试研究。符合条件的参与者是预期寿命≤12个月的晚期老年患者（年龄≥60岁）的主要家庭照顾者。基线（T1）和干预后三个月（T2）的结果指标包括家庭照顾者的照顾压力、心理困扰、感知到的外部支持、亲密关系以及关于护理计划的沟通。共有628名家庭照顾者在T1时入组，40.0%完成了T2评估。ICEST模式在减轻照顾压力、抑郁以及对患者的担忧方面有效，同时在与患者就护理计划达成一致以及感知到的外部支持方面有所改善。在T1时，配偶对照顾的负面看法更多，面临的调整需求比成年子女少。与配偶相比，成年子女与患者的关系更亲密。在T1和T2之间，配偶对患者的担忧减少幅度比成年子女更大。ICEST模式无论对于何种关系类型的家庭照顾者，在个人和人际关系方面都带来了更好的结果。配偶和成年子女在提供居家临终关怀时面临不同的挑战。有效的干预措施应改变配偶照顾者对照顾的负面看法，并使成年子女能够应对多项任务和复杂期望。
