JCPSLP Vol 16 no 3 2014_FINAL_WEB

Research

Participants, researchers and participatory research Deborah Hersh

In this paper, I examine the role of participants in research, and their relationships with researchers. I suggest three reasons to consider the nature of participation in research: to direct the ethical decisions, protections and processes in the research; to ensure the quality of the research; and to guide the dissemination, translation and impact of the research. I illustrate each of these points with some examples from the field of aphasiology, and suggest that participatory research designs offer ways to identify and truly respond to the needs of our clients. W hether working clinically or in academic contexts, speech pathologists are encouraged to undertake research as part of their practice. Many research designs depend on the recruitment of participants. While this appears to be stating the obvious, it is worth stepping back to consider what the role of the participant entails in a particular project. A good way of illustrating why this issue is important is to be found close to home. In the Speech Pathology Australia Code of Ethics (Speech Pathology Australia, 2010), section 3.3.8 on Research includes the need to “respect the rights of research participants” and to “communicate the results of our research or other professional advancements in a professional manner to our colleagues and to the research participants/our clients where appropriate” (p. 3). This statement represents a subtle shift over the last ten years. The equivalent section of the previous Speech Pathology Code of Ethics (2000, p. 7) stated: We communicate the results of our research or other professional developments to our colleagues through recognised scientific channels, so that our colleagues may form an opinion of the merits of this work before we present the results to the public. In this version, there was no specific obligation to inform the participants of the results of the research in which they had been involved. This shift is of interest because it forms part of a wider move within research to revise and perhaps challenge the relationships between researchers and participants. What roles might participants now play in our research? Birch and Miller (2012) note the shift in terminology in social research more generally from the “research subject” to “research participant” with an accompanying expectation

of changed roles and responsibilities. The term “research subject” suggests a level of passivity, of some intervention or experiment being done to someone. This may fit a positivist view of research where there is an external truth to be found through the process. This approach favours larger numbers of subjects, often placed into groups (and ideally recruited into randomised controlled trials), isolating variables, and with the researcher taking care not to influence subjects in any way. The term “participant”, on the other hand, suggests a more active role. In interpretive research approaches, there is more room for the individuality of participants, and for them to influence the direction of the research. This is more typical in qualitative research which favours smaller numbers and relies on the trust and rapport between participant and researcher for quality findings (for example, in an interview situation). In practice, there is no simple divide between quantitative and qualitative research in use of the term “participant” and it is now used widely across different philosophical frameworks (along with other terms like subject, interviewee, respondent, informant – depending on the type of study). For example, in Section 1 (“Values and Principles of Ethical Conduct”) of the NHMRC National Statement on Ethical Conduct in Human Research (2007), we see: The relationship between researchers and research participants is the ground on which human research is conducted. The values set out in this section – respect for human beings, research merit and integrity, justice, and beneficence – help to shape that relationship as one of trust, mutual responsibility and ethical equality. For this reason, the National Statement speaks of research ‘participants’ rather than ‘subjects’. (p. 9) Within its remit covering the ethical conduct of all human research, the National Statement also acknowledges the very broad use of the term “participants” to include involvement through survey, interviews, and focus groups; undergoing testing or treatment; researchers accessing personal documents; collection or use of body organs, tissues, fluids; and even “to include those who may not even know they are the subjects of research; for example, where the need for their consent for the use of their tissue or data has been waived by a Human Research Ethics Committee (HREC)” (p. 7). This point demonstrates a certain flexibility assigned to the term “participant” but also that there is a responsibility to participants in all forms of research, regardless of the degree of their involvement in the research process. Despite this complex research climate, it is worth considering what the term “participant” might entail in speech pathology, what we expect of

KEYWORDS PARTICIPATORY ACTION RESEARCH ETHICAL RESEARCH RESEARCHER- PARTICIPANT RELATIONSHIP APHASIA RESEARCH THIS ARTICLE HAS BEEN PEER- REVIEWED

Deborah Hersh

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JCPSLP Volume 16, Number 3 2014

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