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J Intellect Disabil Res. 2013 Mar;57(3):216-25. doi: 10.1111/j.1365-2788.2011.01527.x. Epub 2012 Feb 1.

'You need to let your voice be heard': research participants' views on research.

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1
Department of Public Health, Food Studies and Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY 13244, USA. kemcdona@syr.edu

Abstract

BACKGROUND:

Persons with intellectual and developmental disabilities have had regrettably few opportunities to voice their opinions on aspects of research with which they have had direct experience. Understanding and responding to these views can contribute to policies and practices that increasingly treat people as they desire to be treated.

METHODS:

We conducted individual interviews and focus groups with 16 adults with intellectual and developmental disabilities to examine their perspectives on participating in research.

RESULTS:

Our analysis indicates that adults with intellectual and developmental disabilities want to engage in research to improve their quality of life and to have greater access to a worthwhile activity through more active participation. Our results also highlight trust as a critical ingredient in the success of research with this group.

CONCLUSIONS:

Our findings suggest that despite ethical challenges, researchers can and should pursue research that has the potential to improve the lives of persons with intellectual and developmental disabilities. Such research is more likely to be both ethical and successful if researchers pay attention to enhancing autonomy and person-centredness, while at the same time engendering participant trust.

[Indexed for MEDLINE]

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