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.

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.