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

doi:10.1111/jar.12453

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 Journal › Article › Academic › peer-review

Abstract

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 language	English
Pages (from-to)	942-947
Number of pages	6
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	31
Issue number	5
Early online date	2 Apr 2018
DOIs	https://doi.org/10.1111/jar.12453
Publication status	Published - 1 Sept 2018

Funding

Funding information This study is funded by the Consortium Stronger On Your Own Feet (www.sterkeropeigenbenen.nl). 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.

Funders
Nederlands Instituut voor Onderzoek van de Gezondheidszorg

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 10 Reduced Inequalities
SDG 16 Peace, Justice and Strong Institutions

Keywords

Health
Inclusive research
Intellectual disabilities
Interviews
Participation
Survey

Access to Document

10.1111/jar.12453

Persistent URL (handle)

Persistent link

Cite this

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

abstract = "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.",

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An exploration of the participation of people with intellectual disabilities in research-a structured interview survey. / Frankena, Tessa Kim; Naaldenberg, Jenneken; Bekkema, Nienke et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 31, No. 5, 01.09.2018, p. 942-947.

Research output: Contribution to Journal › Article › Academic › peer-review

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AU - Naaldenberg, Jenneken

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AU - Leusink, Geraline

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AB - 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.

KW - Health

KW - Inclusive research

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

Abstract

Funding

UN SDGs

Keywords

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