Department of Medicine, St Vincent's Hospital, The University of Melbourne, Melbourne, VIC, Australia.
Mercy Palliative Care, Sunshine, VIC, Australia.
Palliat Med. 2020 Mar;34(3):358-366. doi: 10.1177/0269216319892825. Epub 2020 Feb 27.
There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population.
To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents.
Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures.
SETTING/PARTICIPANTS: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia).
In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life ( = -.63, < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support.
This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.
目前缺乏研究关注照顾患有绝症的儿童的父母的心理社会困扰的普遍性和严重程度。还需要更多的研究来更好地了解这一人群的经历、支持需求和生活质量。
描述照顾患有绝症的儿童的经历和支持需求，并研究父母的困扰程度和生活质量。
在顾问小组的指导下进行横断面、前瞻性、定量研究。参与者完成了一份调查问卷，包括人口统计学和自我报告的未满足的支持需求、照顾评估、心理困扰和生活质量的衡量标准。进行了双变量相关分析，以检验各测量值之间的相关性。
地点/参与者：目前正在照顾一个或多个患有绝症（⩽18 岁）并在儿科姑息治疗服务机构（澳大利亚）登记的儿童的父母（88%为女性）。
共有 143 名父母（36%RR）完成了问卷。与人口正常值相比，参与者报告生活质量低、照顾者负担重、心理困扰大。样本中有近一半（47%）符合一种或多种临床显著压力、焦虑或抑郁诊断标准。心理社会结局变量之间存在显著相关性；照顾者压力和抑郁与生活质量的相关性最强（ = -.63， < .001，两者均如此）。参与者还报告了与情感和实际支持相关的多种未满足的需求。
本研究为儿科姑息治疗领域不断增加的证据做出了贡献，特别是照顾患有绝症的儿童的父母报告的困扰和负担程度较高、生活质量较低以及需要更多针对其未满足需求的情感和实际支持。儿科姑息治疗服务机构应常规评估父母的心理健康状况并提供适当的支持。
