Research with persons with intellectual disabilities: An inclusive adaptation of Tourangeau's model

Abstract

a b s t r a c tThis paper demonstrates how Tourangeau's model of survey response (Tourangeau, 1984) can be adapted to facilitate research with people with intellectual disabilities. As the focus on voice of marginalized people become increasingly important, especially when involving service outcomes and policy making, researchers in fields such as quality of life continue to seek sound research methods to present true voice of such persons. To achieve this, this paper consolidates challenges and strategies of research methods among literature and identifies additional challenges and strategies through the current study. It then describes the development of this current study, which examined the transition outcomes of youth with mild intellectual disabilities (i.e. change in status for young people after formally leaving school, from behaving primarily as students to assuming adult roles in the community). The purpose of this is to demonstrate how Tourangeau's model may be used more inclusively in conjunction with the three dimensions of Triple-I. In summary, Tourangeau's model can be a helpful tool, when used with an inclusive adaptation to facilitate many aspects of the selfreported data collecting process from the design and preparation procedures, through to the data collection.

“Constructing a health assessment questionnaire for people with intellectual disabilities: A cognitive interview study”

“…The present authors found that most problems were within the comprehension component, which is in line with the study of a newly developed patient‐reported outcome measure for thyroid patients in the general population (Watt et al, ). Jen‐Yi et al () described how Tourangeau’s () four‐stage cognitive model (comprehension, retrieval, judgement, response) can be adapted to facilitate research with PID. The present authors followed many of these adaptations when using the QAS (Willis, ): preparing participants (i.e., easy to read information letter, practice questions, emphasize that this is not an exam), enabling participants to choose the interview site and time, ordering related questions and simplifying explanations.…”

“…(Willis, ). These suggestions and rules for designing good survey questionnaires were taken into account (Floyd & Fowler, ; Jen‐Yi, Krishnasamy, & Der‐Thanq, ; Willis, ).…”

Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability

“…In the adjustment phase, co-researchers helped to apply general rules stated in the literature on informed consent, questions, easy language and settings and lay out of the questionnaire. [ 10 , 12 , 14 , 22 ]. During the reflection phase the adjusted scales and test outcomes provided clues for the in-depth discussion on further recommendations.…”

“…Also, providing high quality answers can be difficult for proxy respondents, as shown in a study by Andresen and colleagues where proxies tended to overestimate impairment and underestimate health-related quality of life [ 13 ]. Besides the challenges of proxy-administered questionnaires [ 12 ], the need to listen to the views and experiences of people with ID themselves is increasingly acknowledged [ 14 ].…”

Disability and consumption: A state of the art

“…Psychology and language science publications highlight that people with mental disabilities are able to communicate and make choices about issues that directly concern them. These studies suggest practical solutions to facilitate interviews, considering the importance of the environment, duration, type of questions and even the body language of the interlocutor (Atkinson, 1988; Heal and Sigelman, 1995; Jen-Yi et al, 2015). The linguist Williams uses the conversational analysis method described by Williams and Porter (2016) to provide highly detailed descriptions of the interactions between a researcher and the person with a disability when assisted by a caregiver.…”