The use of proxy measurement of internal states in people with intellectual disability: A scoping review

Abstract

Background: The measurement of internal states of people with an intellectual disability is challenging. Given these difficulties, proxy respondents are sometimes used. However, the literature provides some caution about the validity of the use of proxy respondents.

Aims: This review aims to identify the available evidence regarding the use of proxy respondents in the measurement of internal states of people with intellectual disabilities.

Method: The Arksey and O'Malley scoping review framework was used for this review, refined with the Joanna Briggs Institute Methodology.

Results: Results indicate there are some differences in the findings reported with respect to the efficacy of the use of proxy respondents. These may be due to a number of inconsistencies and weaknesses in examinations of their utility.

Conclusions: If proxy-reports are to be useful in understanding the internal states of people with intellectual disability, researchers need to address the shortcomings revealed by this review.

Keywords: intellectual disability; internal states; proxy informants.