An exploration of the participation of people with intellectual disabilities in research-a structured interview survey

Tessa Kim Frankena*, Jenneken Naaldenberg, Nienke Bekkema, Henny J.M. van Schrojenstein Lantman-de Valk, Mieke Cardol, Geraline Leusink

*Corresponding author for this work

Research output: Contribution to JournalArticleAcademicpeer-review


Background: 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. Method: 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. 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. Conclusions: 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.

Original languageEnglish
Pages (from-to)942-947
Number of pages6
JournalJournal of Applied Research in Intellectual Disabilities
Issue number5
Early online date2 Apr 2018
Publication statusPublished - 1 Sept 2018


Funding information This study is funded by the Consortium Stronger On Your Own Feet ( The funders had no role in the study design, data collection and analysis, decision to publish or preparation of the manuscript. We would like to thank co-researchers Anneke van der Cruijsen and Simon Wilting for their contribution to this structured interview survey. In addition, we are very grateful to PLT respondents, interviewers, and researchers who made this study possible. Furthermore, we would like to thank NIVEL for the opportunity to be part of the 2014 PLT survey. Moreover, we are thankful for the support of the Consortium Stronger On Your Own Feet.

FundersFunder number
Nederlands Instituut voor Onderzoek van de Gezondheidszorg


    • Health
    • Inclusive research
    • Intellectual disabilities
    • Interviews
    • Participation
    • Survey


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