Article

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.
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.

Langue : ANGLAIS