Participatory research (PR) is an approach that aims to increase the relevance and implementation of health research by involving end-users, those affected by the outcomes of health studies, in addition to academic researchers in developing research. While the importance of involving end-users at all levels of health research is widely recognized, few studies within the field of autism research involve autistic adults as research partners. Recognizing the potential relevance of related populations to understanding the value of PR paradigms in informing autism research, PR partnerships involving people with other neurodevelopmental disorders were also examined.
Objectives:
(1) Identify existing PR partnerships between academic researchers and individuals with autism or other neurodevelopmental disorders; (2) examine the reported impact of these partnerships on quality of research in primary literature; and (3) map out existing studies documenting such partnerships.
Methods:
A scoping review of literature on PR partnerships between academic researchers and individuals with autism or other neurodevelopmental disorders was conducted. A comprehensive search of the literature between January 1950 and September 2012 was completed. Studies were identified through electronic searches of Medline, Embase, CINAHL, PsycINFO, and EBSCO. Grey literature and bibliographies were also searched. Retained studies described research partnerships in which individuals with autism or other neurodevelopmental disorders participated in one or more stages of research development and contained descriptions of the participatory process.
Results:
Of the 754 studies yielded from a librarian-guided literature search, only five described PR partnerships between academic researchers and individuals with autism or other neurodevelopmental disorders. Four were qualitative studies guided by the participatory action framework, and one employed a mixed-methods design using the Delphi method of consultation. One study examined participatory research partnerships between academic researchers and adults with autism, and four studies examined participatory research partnerships with adults with neurodevelopmental disorders.
The PR partnerships were grouped into two categories: partnerships active during the initial development of the research project (two studies; end-user involvement in setting research questions and identifying research priorities) and partnerships involving end-user involvement throughout the research project (three studies; end-user involvement in conducting study, data analyses, and/or dissemination of research findings). Each study described the benefits of PR partnerships with respect to research quality; these included the addition of the end-user’s experiential knowledge, which enhanced the relevance of the research. Common challenges reported in the studies included addressing diverse communication needs and maintaining active end-user participation despite time constraints.
Conclusions:
This scoping review revealed positive impacts of PR research in the field of autism and neurodevelopmental disorders which were consistent with the findings of systematic reviews of PR partnerships in the broader health research literature. However, within the limited number of such PR partnerships, gaps in the reporting of strategies enabling optimal PR partnerships within the autism and neurodevelopmental disorder population were revealed. Further development and assessment of PR partnerships is warranted in autism research.
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