People with Intellectual Disabilities Can Speak for themselves! A Methodological Discussion of Using People with Mild and Moderate Intellectual Disabilities as Participants in Living Conditions Studies

Abstract

In 2016–2017, a living conditions survey was conducted among people with intellectual disabilities in Sami areas in Norway. The aim of this article is to discuss methodological aspects of carrying out living conditions studies where people with mild and moderate intellectual disabilities answer the questions themselves. What kinds of methodological challenges related to the reliability and validity of the study arise? How do we cope with these challenges? How can they affect the quality of the study? The challenge, among other things, is whether we measure what we want to measure. We argue it is possible to let people with intellectual disabilities answer surveys if we carefully consider methodological and research ethical issues throughout the entire research process. To let people with intellectual disabilities answer for themselves will strengthen the quality of the research. At the same time, we must recognise the limitations.

Keywords

• living conditions studies
• intellectual disabilities
• research method
• gatekeepers