Successful strategies for including adults with an intellectual disability into a research study using interpretative phenomenological analysis (IPA)

Abstract

Background: Adults with intellectual disabilities are not regularly recruited as participants in health research which may be due to perceptions regarding their inability to participate meaningfully with or without significant support and anticipated difficulty in gaining ethical approval because of issues around consent and mental capacity. This means that the voices of people with an intellectual disability are often missing within health research and their experiences and views are unexplored. Aim: To share successful strategies for accessing, recruiting and collecting data from a purposive sample of adults with an intellectual disability using interpretative phenomenological analysis (IPA). Discussion: Interpretative Phenomenological Analysis was a person-centred, flexible and creative approach to adopt. Meaningful collaboration with people with intellectual disabilities, their families, carers, advocacy group managers, specialists within intellectual disability services and research supervisors was vital to the success of conducting this study. Practical strategies for including people with an intellectual disability in a study from the perspective of a novice researcher, an outsider to the field of intellectual disability, have been shared. A limitation is that participants were not included in all stages of the research process. Conclusion: Inclusion of participants with an intellectual disability in research studies is important and achievable for healthcare researchers. A framework to support researchers outside of the specialist field of intellectual disabilities has been presented. Implications for practice: Adults with intellectual disabilities often receive poor healthcare and have poorer outcomes which is perpetuated if their input into research is not facilitated. People with intellectual disabilities make valuable contributions to the evidence base; personal views and perceptions of healthcare are important if health services are to meet individual needs.