Participatory Research with People with Aphasia: Frameworks, Examples, and Implementation Guidance

Authors

• Jacqueline J. Hinckley, Department of Speech/Language Pathology, Nova Southeastern University, Fort Lauderdale, Florida, USAFollow
• Katie A. Strong, Department of Communication Sciences and Disorders, Central Michigan University, Mount Pleasant, Michigan, USAFollow
• Brent Archer, Interactional Aphasiology Lab, Bowling Green State University, Ohio, USAFollow
• Lauren Bislick, Department of Neurology, Division of Speech Pathology, Mayo Clinic, Rochester, Minnespta, USAFollow
• Suma R. Devanga, Department of Communication Disorders and Sciences, RUSH University Medical Center, Chicago, Illinois, USAFollow
• Amy E. R. Engelhoven, Department of Communication Sciences and Disorders, Western Kentucky University, Bowling Green, Kentucky, USAFollow
• Anthony Pak-Hin Kong, Academic Unit of Human Communication, Learning, and Development (HCLD) and Aphasia Research and Therapy (ART) Laboratory, The University of Hong KongFollow

Abstract

Participatory research (PR) improves the meaningfulness and efficiency of research and reduces the research-to-practice gap, because it includes the lived experience of those who are affected by the research in the planning, execution, and dissemination of the research. Communication disabilities, like aphasia due to stroke, or communication differences impact the way in which meaningful research collaborations can take place. The purpose of this paper is to describe the ethics, challenges, and opportunities for involving people with aphasia as collaborators in research. We highlight specific examples of PR projects undertaken by community member teams composed of researchers, clinicians, people with aphasia, and their family members. We provide resources and recommend future research efforts and directions. PR on various topics may necessitate the involvement of individuals with communication disabilities and differences. This paper demonstrates that it is possible for individuals with communication disorders to participate, and for researchers to use effective techniques to ensure that participation is possible. When research is undertaken with advanced knowledge of the effort and techniques needed, meaningful participation can be achieved.

Keywords

public and patient involvement, patient-centered outcomes research, co-design, community-based participatory research, communication disabilities

Author Bio(s)

Jacqueline Hinckley, Ph.D., CCC-SLP (Corresponding Author; https://orcid.org/0000-0002-4052-1420) is Professor of Speech-Language Pathology at Nova Southeastern University. She serves as Chair of the Board of Directors of the National Aphasia Association. She is an ASHA Fellow and Fellow of Person-Centered Care. Please direct correspondence to [email protected]

Katie Strong, Ph.D. CCC-SLP (https://orcid.org/0000-0001-8921-9639) is an Associate Professor at Central Michigan University’s Department of Communication Sciences and Disorders where she leads the Strong Story Lab and is the Midwest Regional Coordinator for Project BRIDGE. Dr. Strong is an American Speech-Language-Hearing Association (ASHA) Fellow and Tavistock Distinguished Aphasia Scholar and a regular host of the Aphasia Access Conversations Podcast.

Brent Archer, Ph.D., CCC-SLP (https://orcid.org/0000-0002-0382-940X) is Associate Professor in the Department of Communication Sciences and Disorders at Bowling Green University. He is the Director of the Aphasia CHAT Lab.

Lauren Bislick, Ph.D., CCC-SLP, CBIS (https://orcid.org/0000-0001-9904-7332) is Speech-Language Pathologist in the Department of Neurology, Division of Speech-Language Pathology, at Mayo Clinic in Rochester, MN.

Suma Devanga, Ph.D., CCC-SLP (https://orcid.org/0000-0002-4730-7355) is Associate Professor in the Department of Communication Sciences and Disorders at Rush University. She is a researcher and speech-language pathologist.

Amy Engelhoven, Ph.D., CCC-SLP CBIS (https://orcid.org/0000-0001-9414-3405) is an Assistant Professor in the Department of Communication Sciences and Disorders at Western Kentucky University. Her research interests include accessibility of speech-pathology services in underserved populations and psychobiological response to acquired communication disorders in both caregivers and care-receivers

Anthony Kong, PhD, ASHA Fellow, (https://orcid.org/0000-0002-6211-0358) is Head of Academic Unit of Human Communication, Learning, and Development (HCLD) and Director of The Aphasia Research and Therapy (ART) Laboratory at The University of Hong Kong.

Acknowledgements

The work described in this paper was supported by a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (17449-NSU) 2020-2021 and a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (Contract # EAIN-7111) 2017-2019. The first author also thanks the administration of Nova Southeastern University for ongoing support of the work associated with this project. We would like to acknowledge and thank all the people who have learned about, participated in, and talked about participatory research in aphasia because of their connection to Project BRIDGE.

Publication Date

10-31-2026

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 International License.

Recommended APA Citation

Hinckley, J. J., Strong, K. A., Archer, B., Bislick, L., Devanga, S. R., Engelhoven, A. E. R., & Kong, A. P.-H. (2026). Jacqueline J. Hinckley, Katie A. Strong, Brent Archer, Lauren Bislick, Suma R. Devanga, Amy E. R. Engelhoven, Anthony Pak-Hin Kong. The Qualitative Report, 31(10), 7038-7060.

ORCID ID

https://orcid.org/0000-0002-4052-1420