People with ID as active participants in nursing research : a literature review.

Aim: The movement from a medical model of disability to a more social model implies an imperative to include the views of people with ID in research regarding their care. Contemporary quality processes in improving care require consumer involvement at many levels and in doing so have shown better outcomes. A New Zealand research study is being undertaken utilizing focus groups with people with ID to understand their experiences during a psychiatric inpatient admission. The primary focus of this presentation will concern the literature review, undertaken as part of the study, of research in which people with ID have participated. Method: The literature review was conducted using a variety of electronic databases and search terms to identify studies with people with ID as active participants. Results: Only a few studies have been undertaken with people with ID as participants. While these studies demonstrate numerous benefits in including the voice of the person with ID this still remains absent from much of the research discourse. Conclusion: It is accepted and indeed advocated that people with ID have the same rights as others in regard to choosing whether or not they wish to participate in research. High response rates in the few identified studies indicated that people with ID are eager to be consulted. It is recommended that the unique needs of people with ID be taken into account in the research evidence base for future services.