A Cyclical Model of Engagement of People With Intellectual Disabilities (ID) in Participatory Action Research (PAR)

PURPOSE: Occupational therapy research addressing health and wellness disparities experienced by people with intellectual disabilities (ID) is most likely to be effective when driven by the stated needs of people with ID. Participatory action research (PAR) is one approach to conducting research driven by people with ID. Currently, publications on PAR discuss strategies to support people with ID to access PAR, but do not describe how engagement occurs. The purpose of this study was to develop a model describing the process of engagement in PAR for co-researchers with ID.

DESIGN: This qualitative research design utilized key informant interviews. Participants were recruited through professional contacts and subsequent snowball sampling. Inclusion criteria for co-researchers with ID (n=5): diagnosis of ID, at least one PAR experience in the last 12 months. Inclusion criteria for academic researchers (n=5): experience with at least two PAR studies with people with ID, with at least one in the last 12 months. We conducted additional interviews with co-researchers with ID (n=1) and academic researchers (n=2) to triangulate findings.

METHOD: We used a narrative interview approach. We asked participants to tell stories about their experiences in PAR, such as stories that illustrated engagement and when research was fun or boring. Interviews were analyzed by two independent codes by conducting the following steps in thematic analysis: 1) apply initial codes; 2) organize initial codes into higher order conceptual codes; 3) apply conceptual codes; 4) develop narrative summaries to check the salience of conceptual codes; 5) analyze relationships between conceptual codes to develop themes; 6) review data from triangulation interviews and search for negative cases to check the salience of themes. Relationships between themes informed a conceptual model. Participants provided feedback on the conceptual model using online feedback forms and optional phone calls.

RESULTS: The data suggested that solicitation of co-researcher input initiates a cycle of increasing engagement and input from co-researchers with ID. In response to this increased engagement and input, academic researchers act on this input (e.g., incorporate their ideas), which further increases engagement and input; this leads to solicitation of additional input, which reinforces the cycle. Over time, this cycle of engagement is enhanced as co-researchers increase their sense of ownership over the research and the full research team experiences increases in trust and develops a shared sense of purpose. This cycle is supported when co-researchers perceive the PAR process provides individual (e.g., learning, enjoyment) and/or societal benefits (e.g., policy change). Additionally, co-researcher input is optimized when academic researchers use strategies to reduce cognitive demands of research tasks, such as incorporating experiential learning and breaking down tasks.

CONCLUSION: We developed a conceptual model to describe the process of engagement in PAR for co-researchers with ID. This model suggests it is critical for academic researchers to solicit co-researcher input and then act on the input they receive. Future research evaluating this model may identify discrete strategies that can be used to optimize this process (e.g., specific strategies for soliciting input, reducing task demands, etc.).

IMPACT: Application of this model may support occupational therapy researchers to adopt a PAR approach in their research with people with ID. Increased involvement of people with ID in occupational therapy research has the potential to lead to more effective interventions to reduce health, wellness, and participation disparities experienced by people with ID.

References

Stack, E., & McDonald, K. E. (2014). Nothing about us without us: Does action research in developmental disabilities research measure up?. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 83-91. doi:10.1111/jppi.12074

Frank, L., Basch, E., & Selby, J. V. (2014). The PCORI perspective on patient-centered outcomes research. JAMA, 312(15), 1513-1514. doi:10.1001/jama.2014.11100

Bailey, S., Boddy, K., Briscoe, S., & Morris, C. (2015). Involving disabled children and young people as partners in research: A systematic review. Child: Care, Health and Development, 41(4), 505-514. doi:10.1111/cch.12197