Using Non‐Standard Research Methods to Explore the Perspectives of People With Intellectual Disabilities on Sensitive Topics: A Discussion of the Research Paradigm, Data Collection Methods and Data Analysis

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Authors: Irene Tuffrey-Wijne, Andrea Bruun, Rebecca Anderson-Kittow
Cited by: 1
References: 67

Abstract

BACKGROUND: To make research on sensitive topics accessible to participants with intellectual disabilities, researchers have used innovative, non-standard data collection methods. However, there is a lack of information about data analysis, validity and reliability. METHODS: Using the example of a focus group study on end-of-life care planning with people with intellectual disabilities, the development and implementation of several creative data collection methods and the process of data analysis are described and discussed. RESULTS: Newly developed data collection tools were presented as 'games' that successfully elicited participant perspectives. Data analysis involved the Framework method within an interpretivist phenomenological research paradigm. It incorporated extensive team discussions, including researchers and advisors with intellectual disabilities. CONCLUSION: Any activity can become a valid data collection tool if it fits the study's research paradigm, has a clear rationale, is co-developed and tested with people with intellectual disabilities and if the analytical process is clearly described.

Fields of Study & Subjects

Down syndrome and intellectual disability research Disability Rights and Representation Disability Education and Employment

Publication details

Journal / source
Journal of Applied Research in Intellectual Disabilities
Publisher
Wiley
Volume
39
Issue
3
Pages
e70232–e70232
Publication date
29 April 2026
Language
EN