一个社交网络，两种视角：基于自我报告和代理报告的唐氏综合征患者的社交网络。
One social network, two perspectives: Social networks of people with Down syndrome based on self-reports and proxy reports.
机构信息
hsg Bochum Hochschule für Gesundheit, University of Applied Sciences, Bochum, Germany.
Social and Behavioral Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland.
出版信息
J Appl Res Intellect Disabil. 2020 Nov;33(6):1188-1198. doi: 10.1111/jar.12736. Epub 2020 Apr 14.
BACKGROUND
For people with intellectual disabilities (ID), social networks play a key role in facilitating social inclusion, health, and quality of life. This study shows that a multi-informant approach to collecting social network data improves our understanding of the social worlds of people with Down Syndrome (DS).
METHOD
A mixed methods egocentric network approach was employed to investigate 27 dyads comprised of people with DS and their family members as proxy reporters to examine variability in network characteristics across self- and proxy reports.
RESULTS
The self-reported total network size of people with DS was significantly smaller than the network size based on proxy reports. Significant differences were found between self- and proxy-reported networks with respect to most relationship groups. Proxy informants reported more "paid staff".
CONCLUSION
Our study showed that multiple perspectives on the social networks of people with DS are advantageous for researchers, policy makers, and practitioners.
背景
对于智障人士（ID）来说，社交网络在促进社会包容、健康和生活质量方面起着关键作用。本研究表明，采用多信息源方法收集社交网络数据，可以更好地了解唐氏综合征（DS）患者的社交世界。
方法
采用混合方法的自我中心网络方法，调查了 27 对由唐氏综合征患者及其家庭成员作为代理报告者组成的个体，以考察自我报告和代理报告的网络特征的变异性。
结果
唐氏综合征患者的自我报告总网络规模明显小于基于代理报告的网络规模。在大多数关系群体中，自我报告和代理报告的网络之间存在显著差异。代理信息提供者报告了更多的“带薪员工”。
结论
我们的研究表明，从多个角度看待唐氏综合征患者的社交网络，对研究人员、政策制定者和实践者都有利。
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