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