Towards a consumer-informed research agenda for aphasia: preliminary work

Abstract

Purpose: Person-centeredness in clinical practice incorporates the values of clients into a shared decision-making approach. The values of person-centeredness can be extended into the realm of research when the views of consumers towards relevant and important research topics are sought. Work in other health domains has shown the importance of gathering consumer views on health care research, which ultimately extends into health care policy and practice. The purpose of this paper is to report methods used successfully to gather the views of individuals living with aphasia on research topics they view as important. Methods: The project is founded on principles of community-based participatory research. Using a modified nominal group technique, members of an aphasia support group generated a list of research topics. Results: The Aphasia Support Group identified twenty-two potential research questions. Although a majority (59%) of the research questions generated by persons with aphasia could be addressed with accumulated scientific evidence, the remainder of the generated questions has not been addressed in the research literature. Conclusions: This project demonstrates that consumers with aphasia can participate as stakeholders in the discussion of research needs in aphasia. Additional work is needed to fully develop a consumer-informed research agenda for aphasia.

Implications for Rehabilitation

• The perspectives of individuals with post-stroke aphasia on research needs can be successfully collected using nominal group techniques.

• Consumer input to research agendas and priorities can help to address potential research biases.

• Clinicians and researchers can use these techniques and other communication supports to foster collaborative, patient-centered care in their practice and work.

• Aphasia
• consumer participation
• patient-centred care

Acknowledgements

We would like to thank all of the members of the Suncoast Aphasia Support Group for their interest and enthusiasm for the project, and their time and effort in carrying it out. The first author also acknowledges the inspiration of Prof. Linda Worrall, whose personal challenge to incorporate the view of people with aphasia into research conference planning inspired the work reported in this paper. A portion of this paper was presented at the Annual Convention of the American Speech-Language-Hearing Association, 2009.