JCPSLP Vol 16 no 3 2014_FINAL_WEB

Participants and the quality of research

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 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. are communication impaired, consideration of the participant needs to be upfront in the mind of the

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

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JCPSLP Volume 16, Number 3 2014

Journal of Clinical Practice in Speech-Language Pathology