Frankena Tessa Kim, Naaldenberg Jenneken, Bekkema Nienke, van Schrojenstein Lantman-de Valk Henny J M, Cardol Mieke, Leusink Geraline
Department of Primary and Community Care - Intellectual Disabilities and Health, Radboud University Medical Center, Nijmegen, The Netherlands.
NIVEL (Netherlands Institute for Health Services Research), Utrecht, The Netherlands.
J Appl Res Intellect Disabil. 2018 Sep;31(5):942-947. doi: 10.1111/jar.12453. Epub 2018 Apr 2.
Even though participation of people with intellectual disabilities in research is increasingly common, there is little insight into how many people with intellectual disabilities participate, their motivations to participate and their interests regarding study results.
Five questions were added to the Panel Living Together (PLT) survey among 508 people with intellectual disabilities. The questions aimed to gain insight into the (i) frequency of participation; (ii) methods used to participate; (iii) motivations to participate; and (iv) interests regarding study results.
Although 73.5% (n = 347) of the respondents enjoyed their participation and 71.6% (n = 312) found it important to participate, only 11.8% (n = 60) participated in research other than PLT. Of the respondents, 61% (n = 261) indicated they wanted to be informed about study results, 29.1% (n = 148) of this group stated they wanted to compare, learn and share information.
Future research should focus on how motivations of people with intellectual disabilities to participate in inclusive research, such as "empowerment," can be supported to facilitate their involvement in research.
尽管智障人士参与研究越来越普遍，但对于有多少智障人士参与、他们参与的动机以及对研究结果的兴趣了解甚少。
在对508名智障人士进行的共同生活小组（PLT）调查中增加了五个问题。这些问题旨在深入了解（i）参与频率；（ii）参与方法；（iii）参与动机；以及（iv）对研究结果的兴趣。
尽管73.5%（n = 347）的受访者喜欢参与，71.6%（n = 312）的受访者认为参与很重要，但只有11.8%（n = 60）的人参与了PLT之外的研究。在受访者中，61%（n = 261）表示希望了解研究结果，该群体中有29.1%（n = 148）表示希望比较、学习和分享信息。
未来的研究应关注如何支持智障人士参与包容性研究的动机，如“赋权”，以促进他们参与研究。
