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

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.

Active involvement of people with intellectual disabilities in health research - A structured literature review.

Actively involving people with intellectual disabilities (ID) in health research, also known as inclusive health research, is increasingly popular. Currently, insight into experiences of this type of research is scarce. To gain insight into this topic, a structured literature review was conducted focussing on (1) existing theories, (2) inclusive methods, (3) added value and (4) barriers and facilitators. Literature published between January 2000 and January 2014 was included covering keywords related to ID and inclusive health research. Searches were performed in Pubmed, CINAHL, PsycINFO, EMBASE and MEDLINE databases, resulting in 26 included papers. Papers were quality assessed and analysed using qualitative data analysis software. Four theories were often simultaneously addressed: participatory research, emancipatory research, inclusive research and Arnstein's ladder. Barriers and facilitators could be divided into preparing, undertaking and finalising phases of research. Authors indicated that their motivation to conduct inclusive health research was based on demands by policy and funding bodies or was based on ethical considerations (i.e., ethical notions and giving people with ID a voice). Upon completion, authors perceived increased quality and validity of their research and several benefits for stakeholders (i.e., people with ID, researchers and healthcare professionals). Overall, there was consistency in their perception of the most important aspects of inclusive health research. Based on the analysis of included papers, four recommendations of inclusive health research with people with ID were found. Inclusive health research should be: (1) tailoring to the specific study; (2) anticipating all stakeholders; (3) considering its added value; and (4) providing insight into its process.