The purpose of this paper is to find a method that makes it possible for people with intellectual disabilities to independently contribute to population-based research in areas that is sensitive. It is important to be able to answer questionnaires independently in research areas that are sensitive because the informant maybe does not want to ask for help to answer a questionnaire about sexual violence, domestic violence, etc. Maybe they not even have talked to anyone about their experiences and then have to tell a staff/relative that helps them to complete the survey is probably unthinkable.
To participate in a survey about sensitive issues independently the questions and the methods have to be adapted to the informant’s skills and needs. The questions written in “difficult Swedish” were transcribed into simple language and then tested whether the target group understood the words that describe violent acts. After adjustments another small group tested the method, an Audio Computer-Assisted Self-Interview (ACASI). After they had completed the survey informants were interviewed about what it was like to participate in the survey.
Preliminary results show that it is possible to independently answer population-based questionnaires, even about sensitive issues, if the researcher offers the possibility to use a web-based ACASI. An ACASI can be used on accessible computers and tablets and can have the same questions that only have to be translated into both easy language and alternative format, such as questions with both text and images and listen to the questions read.
Researchers can include people with intellectual disabilities, they just need to give them a chance. It is possible if they translate their questions into an easy language and include alternative format, i.e. using both text and images and be able to listen to the questions and answers, by, for example, using a web-based ACASI.
Kristensen, K. and Möller, A. (2017), "Development of Pict-O-Stat: violence – focus on experiences of violence and a survey that can be completed by the individuals themselves", The Journal of Adult Protection, Vol. 19 No. 3, pp. 146-157. https://doi.org/10.1108/JAP-08-2016-0018
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