Co-research with adults with intellectual disability: A systematic review

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Abstract

Background

Co-research with people with intellectual disability is a distinct form of patient and public involvement (PPI). This systematic review summarize published studies and protocols to report on the process of co-research in social and healthcare research.

Method

Relevant studies were identified using electronic searches on ASSIA, PsycInfo and MedLine. Study quality was assessed, and information relevant to the process of working with co-researchers was extracted and thematically analysed.

Results

Thirteen studies were retrieved. Data are reported under three themes: (i) challenges of co-research; (ii) facilitators of co-research; (iii) benefits of co-research. Best practice is presented as a model of co-research. Content analysis on 12 research protocols identified four themes related to PPI.

Conclusions

All stakeholders involved in co-research with people with intellectual disability can benefit, providing there is adequate infrastructure to accommodate and empower the co-researchers. Many current intellectual disability research projects still lack systematic involvement of PPI members.

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