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DOI: 10.1055/s-0044-1795071
Participatory Research: New Insights in Speech, Language, and Hearing Sciences
Research within the speech, language, and hearing sciences primarily relies upon the participation of people. However, traditional or conventional research models often seek to minimize the impact of researcher–participant relationships. Indeed, researchers often seek to remain objective by establishing clear boundaries between themselves and participants (Schubotz, 2020). Within such models, participants provide valuable data, and assessments or treatments provided within such contexts are done to or on the participant community (Nicolaidis et al., 2019). Challenges within such models include addressing aims and goals that do not align with the participant community, decreased social validity, potential for decreased treatment buy-in and effectiveness, and perpetuation of hierarchical structures, particularly when the participants are members of a marginalized community (Raymaker & Nicoalidis, 2013).
In contrast, participatory research models are well-suited to partnering with marginalized communities, such as the disability community. Participatory research has a long history in the social sciences (Swantz, 1975), with the aim of addressing concerns about existing research practices and their lack of social impact and usefulness for the communities for whom they were purportedly developed. Participatory models were developed with the intent to center such communities within the research process (Krueger & Casey, 2015). Within participatory research models, those traditionally underrepresented or denied full participation in the research process are included as co-producers of research, thus shifting power relationships and placing participants at the center of the research project and asking questions that are of importance to their own community.
For the most part, research within the speech, language, and hearing sciences involves the disability community. As such, researchers within the discipline have an opportunity to partner with community members, regardless of their content interest area (e.g., speech sound disorders, aphasia, autism, and early intervention). Participatory research was the focus of the Academic-Research Town Hall Meeting at the 2022 American Speech-Language-Hearing Association Convention during which members were encouraged to reimagine their work in partnership with their participant communities.
The current forum is intended to support this aim. Researchers from across the world share their experiences partnering with communities, some are at the early stages of conceptualizing participatory research, while others have more established practices. The intent of this forum is to support and motivate research action. Indeed, participatory research has two key principles: participation and action (Stoecker, 1999).
In the first article of the forum, Newhouse and Levy provide a clinical tutorial to support researchers in their inclusion of children in participatory research. Using a case study, the authors describe the design of research tools to understand the influence of phonics teaching on children's perceptions of reading within a primary school classroom.
In the second article, Lorah and colleagues used a participatory research framework to examine the perspectives of augmentative and alternative communication (AAC) users related to AAC innovation, specifically with regard to the use of artificial intelligence (AI). Using interviews, the authors examined AAC users' experiences with existing technologies, dreams for future AAC technologies, and attitudes toward incorporating AI into AAC technology in new ways.
Kover and colleagues describe the first steps in their team's participatory research program in the third article. They describe their decision-making toward a participatory research framework and the intentional steps and community building that are involved. In their current qualitative study of early intervention (EI) services providers (speech-language pathologists and administrators), they examine participants' understandings of, and preparation for, cultural responsivity and what are viewed as barriers and facilitators to culturally responsive EI services.
Using a community-based participatory research (CBPR) framework, in the fourth article Girolamo and colleagues examined service needs, unmet needs, and barriers to service in minoritized autistic adolescents and adults, as well as variables that may impact services. By tailoring their CBPR to the local context, they identified differences in individual service variables and effects that differed from previous studies, supporting intersectional approaches to CBPR and autism research.
In the final article, Zisk and colleagues used a participatory research framework to survey school-based professionals' knowledge of autistic speech. School-based professionals were asked to define traditional speech terms, as well as internal autistic speech states. Qualitative analysis revealed limited recognition of internal autistic speech states and the need to identify assessment methods to adequately address autistic speech and AAC needs for autistic students.
Thank you for taking the time to read this forum. I hope that you have enjoyed learning about some of the participatory research that is taking place within the field and that you and your team will start (or continue) your efforts in this area.
Publication History
Article published online:
16 December 2024
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References
- Krueger, R. A., & Casey, M. A. (2015) Focus Groups: A Practical Guide for Applied Research (5 th Edition). London: Sage
- Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., Weiner, M., Maslak, J., Hunter, M., & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007–2019
- Raymaker, D., & Nicolaidis, C. (2013). Participatory research with autistic communities: Shifting the system. In: Davidson, J & Orsini, M. (Eds.), Worlds of Autism (pp. 169–188). Minneapolis: University of Minnesota Press
- Schubotz, D. (2020). Participatory Research: Why and How to Involve People in Research. Los Angeles: Sage
- Stoecker, R. (1999). Are academics irrelevant? Roles for scholars in participatory research. The American Behavioral Scientist, 42(5), 840–854
- Swantz, M. L. (1975). Research as an educational tool for development. Convergence (Toronto), 8(2), 44–52