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JCPSLP
Volume 16, Number 3 2014
Journal of Clinical Practice in Speech-Language Pathology
Participants and the quality
of research
The quality of quantitative, positivist research is usually
underpinned by concepts of internal validity (truthfulness of
the findings), reliability (whether those findings are robust,
consistent or repeatable) and external validity or
generalisability. These concepts do not translate smoothly
to qualitative research because of the different foundations
upon which it rests – most obviously that it is about
subjective, contextually bound experience and that findings
are interpretations and social constructions. However, this
does not mean qualitative research lacks rigour. The most
widely cited translation of traditional measures of research
quality to qualitative research is that of Lincoln and Guba
(1985) who suggested that internal validity can be reframed
as
credibility,
external validity as
transferability
, reliability as
dependability
and objectivity as
confirmability.
Of particular
relevance to the consideration of the role of participants is
the notion of credibility – the fit between what research
participants say or do and how the researchers then
represent that information. The sampling of participants is
an important part of this because the research rests on
accessing those participants who are able to offer the
experience and different viewpoints that the research is
investigating. But also, the practice of member checking is
a crucial aspect of assuring credibility and therefore the
quality of the work. Member checking is taking the data
back to the participants so that they can see if they
recognise their views there, or are able to verify that the
researchers have got it right. Just as objective instruments
need to be well calibrated, or measures need to be
psychometrically tested, so qualitative researchers are the
research instrument and they have a responsibility to collect
data in a trustworthy fashion. Some people offer raw
interview transcripts back for checking, while others offer
aggregated data back through focus groups once a level of
analysis and interpretation has been made. What is of
interest here is the potential power of the participants to
influence the direction of the research through this process.
Carlson (2010) explored this issue based on her own
research experiences and describes a number of instances
where the results of the member checking were not as
expected (for example, one man making major “red pen”
changes through large sections of his interview transcript
removing much of what Carlson thought was most relevant
and replacing it with short notes in the margins). She
suggested a number of tips to enhance the process of
member checking: giving choices in advance about how
it might be done; considering checking sections rather
than the whole transcript; explaining that checking is not
about grammar, fillers or pauses, but rather the ideas in
the interview (this point has implications for how clean the
transcript is, or whether it truly reflects the messiness of
spontaneous speech); informing participants clearly about
the process (for example, that they can add ideas as well
as amend previously stated ones); and finally informing
participants about how the material is to be used in the final
report or publications. Carlson’s suggestions show that
member checking is a negotiated process which should
enhance the rapport between researcher and participant
rather than damage it. It potentially gives participants
considerable input into how data is used. These
suggestions are relevant for participants with aphasia.
Rather than sending a transcript in the post or electronically
to be reviewed, it may be better to go through it in person
(although this is clearly time-consuming). The main ideas
from an interview could otherwise be summarised and
participants when they become involved in research, and
what might be expected of the researcher.
In this paper, I suggest three broad reasons to consider
the nature of participation in research: first, it helps guide
the ethical decisions, protections and processes in the
research; second, it is an important part of assuring
the quality of the research; and third, it guides the
dissemination, translation and impact of the research. I shall
illustrate each of these points with some examples from the
field of communication disorders – specifically aphasiology.
Participants and ethical research
When a research participant is first invited to take part in a
study, he or she needs to know what this commitment will
entail: the purpose, duration of the involvement, the tasks
or activities, any harms or benefits, who is running the
research, how confidentiality is to be maintained, where the
data might be stored, how long for, who else might have
access to it and so on. Such information, along with the
right to withdraw from the study at any time without penalty,
is usually set up well in advance of recruitment because of
the requirements of the ethics committee in the institution
to which the study is affiliated (Israel, 2014). For people who
are communication impaired, consideration of the
participant needs to be upfront in the mind of the
researcher because the process of agreeing to participate,
enshrined in the informed consent procedure, is dependent
on access to all this information. This may mean adapting
the process by which people are recruited, and adapting
the consent forms to be aphasia friendly (Braunack-Mayer
& Hersh, 2001; Kagan & Kimelman, 1995). This topic has
been explored by a number of researchers (Penn, Frankel,
Watermeyer & Müller, 2009; Stein & Brady Wagner, 2006)
and the procedures carefully considered (Jayes & Palmer,
2014). But this is a relatively recent shift in thinking, and for
many years people with aphasia have been excluded from
studies altogether because participation was considered
beyond their capability (Brady, Fredrick & Williams, 2013;
Townend, Brady & McLaughlan, 2007). Not only does this
skew the findings of such research, but it also denies people
the right to be heard and included. Therefore, considering
the ethics of how participants might be recruited, included,
and protected is part of the research process and this, in
itself, shapes the design of the study as well as preparing
the groundwork for participants to feel valued and involved.
In addition to improving access to information and
recruitment, there have been developments in the way
that data might be collected (Dalemans, Wade, van den
Heuvel & de Witte, 2009). For example, Luck and Rose
(2007), in the context of running interviews with people with
aphasia, point out that traditional interviewing techniques,
including a reliance on broad, open-ended questions and
minimal interviewer influence, may not be appropriate.
They argue for “transparency of methods” (p. 210) in data
collection through describing carefully any adaptations
made such as acknowledging in advance the potential for
communication breakdown, discussion of helpful strategies,
video-recording in order to pick up gestures and detailed
transcriptions of total communication use, interviewer
clarifications, word offerings, paraphrasing, funnelling of
questions and so on. Luck and Rose make the important
point that supportive techniques used by interviewers
reduce the reliance on obtaining information from proxies
and make it more likely that people with aphasia can
successfully be participants in research thereby “affirming
that their opinions are valid and attainable” (p. 221). This
has important ethical implications, preserving people’s
autonomy and right to have their views respected.
