唐氏综合征患者 4 至 21 岁个体的生活质量。
Quality of life in individuals with Down syndrome aged 4 to 21 years.
机构信息
Department of Nursing, College of Health and Welfare, Gangneung-Wonju National University, Wonju, South Korea.
School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
出版信息
Child Care Health Dev. 2021 Jan;47(1):85-93. doi: 10.1111/cch.12815. Epub 2020 Oct 9.
BACKGROUND
To date, investigations of quality of life (QoL) in children with Down syndrome (DS) are rather limited. The purpose of this study was twofold: to examine QoL in children with DS and to explore possible differences in the QoL by age and gender.
METHODS
A cross-sectional study of 211 parents of children with DS was conducted using an online survey that included a consent form, a demographic questionnaire and the English version of KidsLife, which is a measure of children's QoL.
RESULTS
Our results demonstrated moderate or favourable levels of QoL except for the emotional well-being domain among children with DS. The children's QoL showed no variance by gender. However, emotional and material well-being, interpersonal relations and social inclusion varied by age.
CONCLUSIONS
The current findings provide important evidence that will help healthcare, educational and social services professionals to understand the multiple aspects of QoL in children with DS and support parents in their efforts to ensure the child's QoL. The results also point to the need to develop interventions aimed at improving QoL in those areas where children with DS are at increased risk for poorer QoL.
背景
迄今为止，对唐氏综合征（Down syndrome，DS）儿童生活质量（quality of life，QoL）的研究相当有限。本研究旨在：考察 DS 儿童的 QoL，并探索年龄和性别对 QoL 的可能影响。
方法
采用横断面研究设计，对 211 名 DS 儿童的家长进行在线调查，内容包括知情同意书、人口统计学问卷和 KidsLife 英文版，该量表用于测量儿童的 QoL。
结果
结果显示，DS 儿童的 QoL 处于中等或良好水平，除情绪健康领域外。儿童的 QoL 无性别差异。然而，情绪和物质健康、人际关系和社会包容因年龄而异。
结论
本研究结果为医疗保健、教育和社会服务专业人员提供了重要证据，有助于他们了解 DS 儿童 QoL 的多个方面，并为家长提供支持，以确保儿童的 QoL。研究结果还表明，需要制定干预措施，以改善那些 DS 儿童 QoL 较差风险较高的领域的 QoL。
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