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

Hege Gjertsen

doi:10.16993/sjdr.615

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.

Highlights

If someone asks questions about your life situation and intends to report your answers to others, would you prefer that someone else answered on your behalf? not
This article aims to discuss methodological aspects of doing living conditions surveys where people with intellectual disabilities are the respondents, and we use the study described above as an example: what kinds of methodological challenges arose, how did we cope with these challenges, and how did they affect the quality of the study? The discussion in this article is mainly about participants with mild and moderate intellectual disability
(measuring what it intended to measure), that was easy enough to understand for people with intellectual disabilities, and that made it possible to compare our findings with previous studies

Summary

Introduction

If someone asks questions about your life situation and intends to report your answers to others, would you prefer that someone else answered on your behalf? not. Their agreement was not a given, because previous living conditions surveys in Norway have consistently been answered by service providers or relatives. Previous living conditions surveys among people with intellectual disabilities in Norway have consistently been answered by service providers or relatives (Kittelsaa, Wik & Tøssebro 2015; Söderström & Tössebro 2011; Tøssebro 1992, 1996). People with intellectual disabilities answered the questions themselves in 88% of the cases They could ask someone to be with them as support during the interview, such as a teacher at the high school. They could fill out the Internet-based questionnaire at home or via a paper version that could be returned by mail If they were not able to answer themselves, a parent or a service provider could answer instead. The interviews were conducted at sheltered workshops (58%), at home (25%), or other places (18%), such as high schools, day centres, or group homes

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