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

Exploring academics' views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities: a modified Delphi study

“…The aforementioned outcomes are in line with an earlier literature review on the added value of inclusive health research for research(ers),11 and overlap was found with expected outcomes of participatory research in general. Additionally, for the outcomes of participatory research, the emergence of new research questions and building on the sustainability of research outcomes were identified 42.…”

“…First, a recent literature review has shown that it is unclear which research designs and methods best fit inclusive health research. 11 Second, there is little agreement on the important characteristics of inclusive health research (eg, payment and training of people with ID). [12][13][14][15] Third, expected or experienced outcomes of inclusive health research, such as improved quality and validity of research or increased empowerment of people with ID, are often not explicitly evaluated or assessed.…”

“…In order to gain a scientific perspective and facilitate inclusive health research,17 knowledge and experiences should be shared among academics on three topics. First, a recent literature review has shown that it is unclear which research designs and methods best fit inclusive health research 11. Second, there is little agreement on the important characteristics of inclusive health research (eg, payment and training of people with ID) 12–15.…”

Voor elk-ander. Ervaringsdeskundigen met een lichte verstandelijke beperking en coaches over betekenisvolle samenwerking

“…Het lijkt erop dat deze samenwerking nog geen lange geschiedenis kent. Op dit moment is bekend dat de ervaringsdeskundige met een verstandelijke beperking een waardevolle bijdrage levert in de dagelijkse praktijk door ondersteuning aan medecliënten, in het onderwijs gericht op toekomstige professionals of in onderzoek gericht op de doelgroep (Embregts et al, 2015;Frankena, Naaldenberg, Cardol, Linehan & Schrojenstein Lantman-de Valk, 2015;McDonald, Kidney & Patka, 2013;O'Brien, McConkey & García-Iriarte, 2014;Puyalto, Pallisera, Fullana & Vilà, 2016;Roeleveld, Embregts, Hendriks & Van den Boogaard, 2011;Van Hove, 2014).…”

The POMONA‐ESP project methodology: Collecting data on health indicators for people with intellectual developmental disorders

“…However, recent studies have highlighted the need to involve people with intellectual developmental disorders in scientific research (Brooker et al, 2015;Frankena, Naaldenberg, Cardol, Linehan, & van Schrojenstein Lantman-de Valk, 2015;Stack & McDonald, 2014), particularly for ethical reasons (Carlson, 2013;Iacono & Carling-Jenkins, 2012;McDonald, Schwartz, Gibbons, & Olick, 2015) and the need to enhance their quality of life (McDonald & Stack, 2016;Nicolaidis et al, 2015).…”