Successful strategies for including adults with intellectual disabilities in research studies that use interpretative phenomenological analysis

Abstract

Background: Adults with intellectual disabilities are not often asked to participate in health research. This may be because researchers perceive them as unable to participate meaningfully with or without significant support and anticipate difficulty in obtaining ethical approval because of issues concerning consent and mental capacity. This means that the voices of adults with intellectual disabilities are often missing from 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 intellectual disabilities from a study that used interpretative phenomenological analysis (IPA).

Discussion: IPA is a person-centred, flexible and creative approach to research. Meaningful collaboration with people with intellectual disabilities, their families, carers, advocacy group managers, specialists in intellectual disability services and research supervisors was vital to the success of the study. The authors share practical strategies for including people with intellectual disabilities, from the perspective of a novice researcher who is an outsider to the field of intellectual disability.

Conclusion: It is important to include people with intellectual disabilities in healthcare research. This article presents a framework to support researchers outside the specialist field of intellectual disabilities in achieving this.

Implications for practice: Personal views and perceptions of healthcare are important if health services are to meet individual needs. Adults with intellectual disabilities often receive poor healthcare and have poorer outcomes. This will be perpetuated without their input into research. People with intellectual disabilities can make valuable contributions to the evidence base.

Keywords: accessible information; data collection; learning disability; methodology; research; study design; study participation; study recruitment.