University: University of Minnesota
Description of Work:
Enrollment of members of minority communities in clinical trials is an important step towards the elimination of health disparities and increases the generalizability of research results. Latinos are disproportionally affected by a number of health issues such as diabetes. Having Latinos participate in research is essential since limited participation leads to limited data specific for this population. Furthermore, for some patients, inclusion in clinical trials represents an opportunity to receive new therapies not otherwise available.
I recently completed a project that explored immigrant Latinos’ understanding of the informed consent conference considered on a broad level, including oral, textual, and visual components. Grounded theory was used as the analytic methodology. This bioethics question was explored by situating the theory within relevant literature in bioethics, rhetoric, scientific and technical communication, and intercultural communication.
Data was gathered in three studies using the methodology of analogue participants. A simulation of a healthy patient consent conference was used in Study 1 and Study 2, while a simulation of a multi-arm diabetes trial was used in Study 3. The analogue participants were recruited from urban Catholic parishes that serve a large immigrant Latino population.
The social context of this community is complex and dynamic. Latino immigrants in this study live in a closely-knit community, sharing a culture, language, faith, for the most part their country of origin, and the immigrant experience. These community members demonstrate care and concern for one another in their shared struggles to acculturate while living with a steady sense of disquietude surrounding the immigration status of themselves, family members, or friends. An undocumented status affects all areas of an immigrant’s life, limiting many potential opportunities.
The grounded theory resulting from the data gathered in Study 1, Study 2, and Study 3 suggests a culturally specific way to present trial information to members of this community, describes how that information might be understood, and illustrates the community’s social context. Understanding the social context is necessary to understand how to present trial information and to understand the autonomy of community members.
Participatory Research: giving a voice
You should be very surprised how many people, how many people are out there that want to speak to someone and maybe not just for little one thing, but on so many things but no one ever, ever bothers to ask them that and no one even bothers in knowing how to ask them
~Participant from the informed consent project
Participatory research is an umbrella term for many discipline specific approaches and is used in many fields such as education, public health, nursing, social work, and ethics. This paper will explore its use in medical communication research by considering what can be gained using this approach, what might be lost, and what practical realities are involved. After introducing grounding literature, the author will discuss her experiences researching in the immigrant Latino community.
The spectrum of participatory research stretches from the traditional academic research paradigm to community based participatory research (CBPR). In traditional academic research, the researcher, the expert, selects the research question and holds the power and decision making abilities. Knowledge production is the primary goal of traditional research. The opposite end of the spectrum is community based participatory research defined as “… a partnership approach to research that equitably involves all participants in all aspects of the research process where each person shares his/her expertise in order to enhance knowledge and develops interventions that will benefit the whole community.” (Israel et al.,1998). Since we are talking about a spectrum, there are naturally, degrees of participatory research. The level of researcher’s and community member’s involvement, the content and focus of the knowledge produced, and the ethical implications of the approach can vary.
The ethics of participatory research are an important consideration which can be explored in a variety of ways. To confront ethical challenges, rule based ethics—autonomy, beneficence, and justice—are an important foundation however, alternative ethical theories are also applicable and helpful to negotiate ethical challenges in participatory research. Schaffer (2009) suggests that virtue ethics, with its focus on relationships, can guide best practices in community based participatory research. The Ethics of Care, informed by feminist theory, provides similar guidance.
To situate participatory research into the work of writing, consider Johnson’s concept of “Audience involved”. Johnson (2004) extends Ede and Lunsford’s notions of audience addressed and audience invoked to what he terms “audience involved”. By this he means involving the audience directly in the discourse production. An example of true participatory research in technical communication was done by Carlos Evia and Ashley Patriarca (2012) of Virginia Tech. They developed workplace safety and risk communication materials for use by Latino construction workers using creative input from these workers resulting in culturally relevant and textually effective materials.
The author will discuss experiences from her research based in the immigrant Latino community, looking at what was effective, what was problematic, and how to promote and continue participatory medical communication research. The project, Examining the gap between a morally valid consent and a legally adequate consent: Investigating Latino understanding of an informed consent conference was a three phase research project that examined the adequacy of the informed consent process when members of the immigrant Latino community are recruited into clinical trials. This project was not designed to be CBPR, though it does fall into the spectrum of participatory research. The approach, which will be described, was chosen because of the author’s cultural knowledge and awareness of the community with respect to power imbalances and issues of trust. The participants’ openness when discussing sensitive community and family problems demonstrated their level of trust. Interestingly, several topics described in CBPR literature were corroborated in this study, for example, the use of research questions that are relevant to the community such as a focus on nutrition.…it is important [the clinical trial]because I consider that the Latino community is stuck with erroneous dietary nutrition information.
The bioethics’ concept of justice, as described in the Belmont Report, involves balancing issues regarding who is receiving the benefits of research and who is bearing the burdens of research. Participatory research directly addresses possible inequalities by allowing the researcher(s) and the community members to jointly agree on a research focus that is responsive to communities’ needs while providing the researcher an enriched comprehension of health concerns. This approach, creating partnerships, allows immigrant communities a voice in research.
Evia, C., & Patriarca, A. (2012). Beyond compliance: participatory translation of safety communication for Latino construction workers. Journal of Business and Technical Communication, 26(3), 340–367.
Israel, B.A., Schulz, A.J., Parker, E.A., Becker, A.B., Allan, A.J., Guzman, J.R.(2008). Critical issues in developing and following CBPR principles. In M Minkler & N. Wallerstein (Eds.), Community-based participatory research for health: From process to outcomes, 2nd ed.(pp. 47-62). San Francisco, CA: John Wiley & Sons, Publishers.
Johnson, R. R. (2004). Audience Involved; Toward a participatory model of writing. In J. Johnson-Eilola & S. A. Selber (Eds.), Central works in technical communication (pp. 91–103). New York, NY: Oxford University Press.
Schaffer, M. A. (2009). A virtue ethics guide to best practices for community-based participatory research. Progress in Community Health Partnerships: Research, Education, and Action, 3(1), 83-90.
The National Commission for the Protection of Human Subjects of Research. (1979). The Belmont Report. Retrieved from http://www.hhs.gov/ohrp/humansubjects/juidance/belmont.html