幼儿 Prader-Willi 综合征照料者的生活质量。
Quality of life in caregivers of young children with Prader-Willi syndrome.
机构信息
Department of Pediatrics, Affiliated Hangzhou First People's Hospital, Zhejiang University School of Medicine, Hangzhou, China.
Department of Endocrinology, Children's Hospital, Zhejiang University School of Medicine, 3333 Binsheng Road, Hangzhou, 310052, China.
出版信息
World J Pediatr. 2019 Oct;15(5):506-510. doi: 10.1007/s12519-019-00311-w. Epub 2019 Sep 13.
BACKGROUND
This study aimed to measure quality of life (QOL) in primary caregivers of young childrenwith Prader-Willi syndrome (PWS).
METHODS
The caregivers of 32 children aged from 6.1 to 71.2 months completed the Chinese version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF). We also evaluated the social adaption capacity of these children with Infants-Junior Middle School Students' Social-Life Abilities Scale. Correlation test was used to explore the related factors to caregivers' QOL.
RESULTS
Caregivers of young children with PWS had significantly lower QOL. The correlation analyses revealed that caregivers' QOL was lower in children with young age, combined diseases or symptoms or poor social adaption, or caregivers having concerns about the child.
CONCLUSIONS
Rearing a chilld with PWS may lead to decreased QOL. Psychological status of caregivers should be highlighted and social support should be given to families with PWS children.
背景
本研究旨在测量患有普拉德-威利综合征（PWS）的幼儿的主要照顾者的生活质量（QOL）。
方法
32 名年龄在 6.1 至 71.2 个月的儿童的照顾者完成了世界卫生组织生活质量简表（WHOQOL-BREF）的中文版。我们还使用婴幼儿-中学生社会生活能力量表评估了这些儿童的社会适应能力。采用相关分析探讨了与照顾者 QOL 相关的因素。
结果
患有 PWS 的幼儿的照顾者生活质量显著降低。相关分析显示，年龄较小、合并疾病或症状、社会适应能力差或对孩子有担忧的儿童照顾者的 QOL 较低。
结论
抚养患有 PWS 的孩子可能会导致生活质量下降。应重视照顾者的心理状态，并为 PWS 患儿家庭提供社会支持。
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