Chan Wallace Chi Ho, Yu Clare Tsz Kiu, Kwok Denis Ka-Shaw, Wan Jamie Kit Ming
Department of Social Work, Education, Community Wellbeing, Northumbria University, Newcastle Upon Tyne, UK.
Department of Social Work, The Chinese University of Hong Kong, Shatin, Hong Kong.
Palliat Support Care. 2024 Oct;22(5):1125-1135. doi: 10.1017/S1478951523000950.
This study aims to examine (1) the prevalence of demoralization among family caregivers of palliative care patients (PCP) in Hong Kong, (2) the percentage of caregivers who are demoralized but not depressed, (3) the factors associated with demoralization, and (4) the differences in caregivers' support needs between high and low levels of demoralization groups.
Ninety-four family caregivers were recruited and completed a questionnaire that included measures of demoralization, depression and caregiving strain, caregivers' support needs, and demographic information.
The prevalence of demoralization among family caregivers of PCP was found to be 12.8% (cutoff score = 50) and 51.1% (cutoff score = 30). Although 27.7% of caregivers met the criteria of depression and demoralization, 12.8% of demoralized caregivers were not depressed. Depression and caregiving strain were identified as the predictors of demoralization. Caregivers with a poorer subjective physical status and a lower education level are more prone to demoralization. The three major caregivers' needs for support reported were (1) knowing what to expect in the future (77.7%); (2) knowing who to contact (74.5%); and (3) understanding your relative's illness (73.4%). Those who experienced a high level of demoralization often reported more need for support in end-of-life caregiving.
This is the first study that focused on the demoralization of family caregivers of PCP in the East Asian context. Demoralization is prevalent among these caregivers. We recommend that early assessment of demoralization among family caregivers of PCP be considered, especially for those who are more depressed and have a higher level of caregiving stress.
本研究旨在探讨（1）香港姑息治疗患者（PCP）家庭照顾者中士气低落的患病率；（2）士气低落但未患抑郁症的照顾者比例；（3）与士气低落相关的因素；（4）士气低落程度高和低的两组照顾者在支持需求上的差异。
招募了94名家庭照顾者，他们完成了一份问卷，其中包括士气低落、抑郁和照顾压力的测量、照顾者的支持需求以及人口统计学信息。
PCP家庭照顾者中士气低落的患病率在临界值为50分时为12.8%，在临界值为30分时为51.1%。虽然27.7%的照顾者符合抑郁和士气低落的标准，但12.8%士气低落的照顾者并未患抑郁症。抑郁和照顾压力被确定为士气低落的预测因素。主观身体状况较差和教育水平较低的照顾者更容易出现士气低落。照顾者报告的三大支持需求是：（1）了解未来会发生什么（77.7%）；（2）知道联系谁（74.5%）；（3）了解亲属的病情（73.4%）。那些经历高度士气低落的人在临终照顾方面通常报告更需要支持。
这是第一项聚焦于东亚背景下PCP家庭照顾者士气低落情况的研究。士气低落在这些照顾者中很普遍。我们建议考虑对PCP家庭照顾者的士气低落进行早期评估，尤其是对于那些抑郁程度更高且照顾压力更大的人。
