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Volume 16, Number 3 2014
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established a list of 22 potential research questions.
Interestingly, about 40% of these questions were not ones
which current evidence is able to answer well. As well as
revealing research priorities of people with aphasia, the
researchers took considerable care to summarise the results
of this process in an aphasia-friendly way for their participants
and also to evaluate how accessible that summary was for
the group. Another example of PAR is to be found in the
doctoral work of Carole Pound (2013) which has explored
the experiences of friendship for people with aphasia.
PAR also lends itself well to cross-cultural research. The
recent work of McLellan and colleagues highlights how
these ideas are being used in the area of aphasia in New
Zealand (McLellan, McCann, Worrall & Harwood, 2014).
They use Kaupapa Mãori research (KMR), an Indigenous
research approach which privileges Mãori culture and
knowledge in the process thereby countering the notion
of
being researched
to actively collaborating and directing
it (Denzin, Lincoln, & Smith, 2008). McLellan et al. write
that their goal is to achieve “more culturally appropriate
and beneficial practices in the delivery of speech-language
therapy services” (p. 455), thereby ensuring that the
research is not simply the collecting of data but also giving
back to the community.
In Western Australia, the Missing Voices Research,
funded by the National Health and Medical Research
Council (2013–2015) and led by Elizabeth Armstrong,
is currently exploring the experiences of Aboriginal
Australian adults with acquired communication disorders.
The research involves several strands (data linkage,
the development of a screening tool, interviews with
stakeholders) but overall draws on a participatory
research approach, working in partnership with Aboriginal
researchers and research assistants, and an Aboriginal
reference group. While the research is ongoing, the
requirement for it to be culturally secure and of benefit to
the participants and communities involved, is uppermost in
the design and running of the study.
Ultimately, the research that has been carried out in
aphasiology, as in other fields, has sought to bring benefit
to participants and to the aphasia community more
broadly. How the results of studies are disseminated and
made accessible to participants varies. Results may be
given directly to consumers, for example, via an aphasia
group in the study by Hinckley et al. (2014), or through
the Australian Aphasia Association Conference, a national
conference for people with aphasia and their families.
Connect (2007) includes an example of an aphasia-friendly
summary of their “Discovery Project”. Research may be
disseminated through a range of stakeholders. This may
bring benefit through the service providers who come into
contact with people with aphasia (Simmons-Mackie et al.,
2007) or through a formal consideration of “knowledge
transfer and exchange” targeting people with aphasia,
clinicians, other service providers, managers and funders
(Kagan, Simmons-Mackie, Brenneman Gibson, Conklin, &
Elman, 2010). By considering research participants early
on in a study, researchers can build their needs into the
design, including how the results of that research might
be disseminated and how the knowledge gained from the
study might be shared.
Conclusion
In this paper, I have raised the role of participants by
exploring the nature of their participation. Depending on the
type of study in question, the participant may be more than
simply being “subject” to the research process. His or her
presented in an aphasia-friendly format. A good example
of this is the study by Davidson, Howe, Worrall, Hickson
and Togher (2008) which explored social participation
and friendships in older people with aphasia. Davidson et
al. summarised the main themes from “stimulated recall
interviews” (where the researcher and participant with
aphasia discussed a video of that participant interacting
with a friend) and presented these back to participants “for
verification and validation” using supported conversation
strategies (Kagan, 1998). Techniques like member checking
not only add to the credibility of the research but they also
give far more voice to the participant and add balance to
the researcher/participant relationship.
Participants and the
dissemination, translation and
impact of research
Finally, how might reconsideration of the participant
influence dissemination, translation and impact of the
research? Clearly, the point made at the start of this paper
about the change in the Speech Pathology Code of Ethics
identifies that participants should be informed of the
outcomes of research to which they have contributed.
Perhaps more fundamentally, there is an argument that
being informed is not sufficient but that, for example, even
in the area of aphasia, research can be “user-led” and even
“user-controlled” (Connect, 2007, p. 10) as described in the
guide by Connect, a UK-based charity for people living with
aphasia. This guide contains many practical suggestions to
support communication at all stages of planning and
engaging in research studies. It encapsulates a satisfying
“about turn” in a field where people with aphasia might
arguably move from being excluded from research studies
to collaboratively shaping them.
Perhaps the most obvious manifestation of this
shift is found in participatory action research (PAR),
which is prominent in a range of health, welfare and
social science fields incorporating emancipatory and
community development aims. While PAR is interpreted
in a variety of ways, (and sometimes overlaps with the
terms “participatory research” or “action research”) it
encompasses research that aims to examine the needs of
marginalised or disempowered groups in order to change
or tackle the barriers that they face (Liamputtong, 2009).
PAR aims not only to generate new knowledge that might
help these groups of people but also to assist them to
take ownership of their own knowledge bases. It involves
collaborative work that should improve the lives of research
participants and the communities from which they come.
This approach entails partnership in the design of a study,
in the data collection, in analysis and interpretation. The
process of being involved in research is itself empowering
and ensures the relevance of a study to the individual
participants and on to local communities. Liamputtong
points out that PAR is a methodology rather than a set of
methods and the important underpinning is its philosophy
of knowledge production and empowerment.
Within the field of communication disorders, these ideas
are now gaining ground. Duchan (2014) argues there are
“both moral and political reasons for shifting our thinking
and our research practices to become more emancipatory”
(p. 3). A good example of this is the work by Hinckley,
Boyle, Lombard and Bartels-Tobin (2014). They adopted a
community-based participatory research approach with 25
members of an aphasia support group to find out what
research topics the group thought were most important.
Through a modified nominal group technique, they
