Do we allow or invite people to participate in research? Do we refer to people who volunteer to be in a study as subjects or respondents or informants or participants or people?
This blog is about the language we use when we present or publish our research. The impetus for this blog was a colleague’s recent declaration that people were “allowed” to share their experiences of a health related condition for a study. The blog is a follow up to a previous blog that addressed the implication of power when using words such as compliance and adherence and, perhaps, even concordance (Fawcett, 2020), as well as another previous blog focused on diverse meanings of power (Fawcett et al., 2020).
Upon hearing my colleague state that people were “allowed,” I immediately thought: What is meant by indicating that a researcher “allows” people who volunteer to be in a study so to provide answers to the researcher’s questions in an interview format or via a numeric survey? Does stating that the researcher “allows” the people who volunteer for the study to do whatever the researcher wants them to do mean that the researcher holds power over them? Is a “power over” relationship appropriate for what many nursologists claim as a core value and approach to people, that is, “relationship-centered care?” (See Wyer, Alves Silva, Post, & Quinlan, 2014). Does “allowing” people to share experiences for the purposes of research connote “paternalism, coercion, and acquiescence” (Hess, 1996, p. 19), Should we instead “invite” people to share their experiences or answer our survey questions or accept our experimental interventions?
Although most, if not all, nursologists who conduct research no longer refer to the people who volunteer to be in their studies as “subjects,” these people continue to be referred to as “respondents,” the term frequently used when people respond to a numeric survey, or they continue to be referred to as “informants,” when they answer open-ended interview questions. Perhaps most frequently, the people are referred to as a sample or population of “participants.” Until very recently, I was content with referring to people who volunteered for research projects as “participants.” However, I have begun to think that if we nursologists truly value and support relationship-centered care, we should personalize those who volunteer for our research projects. For example, many of the people who have volunteered for my Roy Adaptation Model-guided program of research (Clarke & Fawcett, 2014; Tulman & Fawcett, 2003).) are women during the childbearing phase of life. Should I refer to these people as women rather than participants?
I invite readers to offer their ideas for words that are most compatible with nursologists’ values about our relationships with people who volunteer for our research projects.
References
Clarke, P.N., & Fawcett, J. (2014). Life as a nurse researcher. Nursing Science Quarterly, 27, 37-41.
Fawcett, J. (2020, March 17). What is Reflected in a Label about Health? Non-Nursology and Nursology Perspectives. Blog. https://nursology.net/2020/03/17/what-is-reflected-in-a-label-about-health-non-nursology-and-nursology-perspectives/
Fawcett, J., Shitaki, Y., Tanaka, K., Hashimoto, Y., Fujimoto, R., & Higashi, S. (2020, September 1). Meanings of power. Blog. https://nursology.net/2020/09/01/power-in-nursing/
Hess, J. D. (1996). The ethics of compliance: A dialectic. Advances in Nursing Science, 19(1), 18-27.
Tulman, L., & Fawcett, J. (2003). Women’s health during and after pregnancy: A theory-guided study of adaptation to change. Springer.
Wyer, P. C., Alves Silva, S., Post, S. G., & Quinlan, P. (2014). Relationship-centred care: antidote, guidepost or blind alley? The epistemology of 21st century health care. Journal of Evaluation in Clinical Practice, 20(6), 881–889. https://doi-org/10.1111/jep.12224
As a nurse who also works in the context of Medical Anthropology and Social Medicine, I view the people that I engage in activist scholarship and participative action work as collaborators and co-creators of knowledge. For me, knowledge is socially constructed. Who asks the questions, what questions are asked, who is included and excluded, what data is collected, how and by whom it is collected, how the data is interpreted and by whom, how it is disseminated and by whom are fundamentally important matters that need to be addressed and made explicit in research done in all disciplines.
Thank you for your comment, which is very informative. I rather doubt that many researchers or practing health care team members think of knowlege as being co-created, although of course it is!
Thank you for this post. In the past I have used respondent and informant, but most commonly refer to people who have provided data for my qualitative studies as participants. More recently I have taken to using “people who have experienced…” For example, I am collecting data through individual interviews with people who recently survived and opioid overdose. In my writings, I refer to them as “people who have experienced and opioid overdose” or “people who are living with/experiencing a substance abuse disorder.” The same is true in clinical situations; for example, instead of labeling an individual as a “cancer patient” or “schizophrenic patient” I use “people who are living with cancer” or “people who are being treated for cancer.”
Timothy, Thank you very much for your comment and your endorsement of referring to those who participate in research or for whom we are caring as people who are … ..
This blog post grabbed my attention because I have long “bridled” at the idea of nurses in practice “allowing” persons to “ventilate” (meaning to express their feelings, not to open windows!), or “allow” persons to choose in whatever situation. So I’m guessing that when nurse researchers use the term “allow” they are transferring that terminology from practice. I haven’t looked at nursing textbook in years but I’d be very surprised if those resources didn’t encourage nurses to “allow” their “patients” to do X. It’s important to call attention to these terms that carry faintly disguised status and power differential assumptions, terms that do dishonor to the caring that is nursing. So thank you, Dr. Fawcett, for calling this one to our awareness.
Thank you for your comment. I also have not looked at clinical textbooks in a long time, but I do not recall every seeing “allow” in a research textbook. The perceived power differential is troubling as we (nursologiests and the entire healthcare system) would not exist if people did not want our “services.”