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日本唐氏综合征患者的新冠病毒消毒行为及照料者的困扰:一项横断面回顾性研究

Disinfection behavior for COVID-19 in individuals with Down syndrome and caregivers' distress in Japan: a cross-sectional retrospective study.

作者信息

Fujino Haruo, Itai Minori

机构信息

Department of Child Development, Graduate School of Child Development, Osaka University, 2-2 Yamadaoka, 5650871 Suita, Japan.

Department of Special Needs Education, Oita University, Oita, Japan.

出版信息

J Dev Phys Disabil. 2023;35(1):81-96. doi: 10.1007/s10882-022-09845-w. Epub 2022 May 26.

Abstract

The COVID-19 outbreak affected the daily lives of individuals with Down syndrome, who were considered to have a higher risk of severe infection. While several studies have reported mental health issues in children and/or parents in the general population, no study has focused on people with Down syndrome and their caregivers. This study investigated the disinfection behaviors of individuals with Down syndrome and their caregivers' stress. A cross-sectional retrospective survey was conducted in October 2020. Caregivers of children and adults with Down syndrome were administered questionnaires including measures for practiced disinfection behavior in children, caregiver's child-related stress, and psychological distress. About half of the respondents' children practiced hand hygiene and mask-wearing behaviors, while physical distancing was performed less frequently. Habitual practices in physical distancing are affected by intellectual function. Logistic regression showed that caregivers' stress was associated with the irritability of individuals with the disorder (adjusted odds ratio [OR] = 8.44, 95% confidence interval [CI] 1.69-42.09) and the burden of infection-prevention behaviors for people with Down syndrome (adjusted OR = 4.26, 95% CI 1.88-9.65). This study showed the characteristics of disinfection behaviors in individuals with Down syndrome and associated factors for serious caregiver stress.

摘要

新冠疫情影响了唐氏综合征患者的日常生活,他们被认为感染重症的风险更高。虽然有几项研究报告了普通人群中儿童和/或父母的心理健康问题,但尚无研究关注唐氏综合征患者及其照料者。本研究调查了唐氏综合征患者的消毒行为及其照料者的压力状况。2020年10月开展了一项横断面回顾性调查。对唐氏综合征患儿及成人的照料者进行问卷调查,内容包括儿童的实际消毒行为、照料者与孩子相关的压力以及心理困扰等测量指标。约半数受访者的孩子有洗手和戴口罩行为,而保持社交距离的行为则较少。保持社交距离的习惯做法受智力功能影响。逻辑回归分析显示,照料者的压力与患者的易怒情绪(调整比值比[OR]=8.44,95%置信区间[CI]为1.69 - 42.09)以及唐氏综合征患者预防感染行为的负担(调整OR = 4.26,95% CI为1.88 - 9.65)相关。本研究揭示了唐氏综合征患者消毒行为的特点以及照料者产生严重压力的相关因素。

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