Positive Partnerships: The Parent Advisor Model of Participatory Research with Parents of Children with ASD

Background:   Although there is now a large body of research concerning best practice guidelines for working with children with ASD and their families, this research could do more to take into account parents’ perspectives.  Since parents spend more time around their children with ASD than do professionals and are responsible for making important decisions on behalf of their children, participatory research offers invaluable information which can be used to develop best practice guidelines with “real world” utility.  Conducting participatory research with parents of children with ASD is a significant step towards ensuring that research is accessible, relevant, and meaningful to these parents and their families.  

Objectives: To describe a Parent Advisor Model of participatory research with parents of children with ASD.  Parent and professional perspectives on the functions, benefits, and drawbacks of Parent Advisors in ASD research will also be outlined.  Finally, recommendations will be offered for how researchers can integrate the Parent Advisor Model in their own ASD research.      

Methods: Participants were 3 parents of children with ASD who routinely collaborate in ASD research in their community and 3 researchers who routinely collaborate with parents of children with ASD in their research.  They offered their perspectives on the functions, benefits, and drawbacks of Parent Advisors in ASD research and proposed the Parent Advisor Model of participatory research.

Results:   Parents and researchers reported parental involvement in a broad range of functions in research, such as offering first-hand perspectives on topics of investigation, advising research panels on participant selection, editing research materials and findings to increase accessibility, involving their own children in research, and disseminating results in academic and community settings.  Parents commented that they benefitted by seeing positive research results, giving voice to other parents of children with ASD, hearing researchers’ perspectives, and facilitating participant recruitment.  Researchers reported benefitting by producing more accessible and parent-relevant research, increasing their sensitivity to parents’ experiences, fostering egalitarian relationships with parents, and improving other parents’ attitudes toward research.  Both parents and professionals mentioned only minor possible drawbacks of participatory research with parents, including practical drawbacks such as difficulty scheduling meetings and that some outside researchers may dismiss parents as “non-academics”.

Conclusions:   A Parent Advisor Model of participatory research involving parents of children with ASD is proposed.  Both parents and researchers report numerous benefits to this model of research, including: giving voice to parents of children with ASD in research, producing more relevant and accessible studies, facilitated recruitment of participants, and improved dissemination of results.  Recommendations are offered for researchers interested in incorporating the Parent Advisor Model into their own research.