Methodologies and Inequities Participatory and Narrative Approaches to Research with Marginalized Communities

Main Article Content

McKinley Green
Val Crutcher
Océane Lune
Munira Mutmainna
Raquelle Lenoir
Andrew Schuster
Gage Urvina
Calla Brown

Abstract

In this commentary, we reflect on a study investigating how young people living with HIV navigated the COVID-19 pandemic and offer concrete methodological approaches to studying health inequity. We describe how participatory and narrative-based methods helped us develop five specific study protocols that reflected our commitments to equity in research: revising questions to account for local conditions of risk; intervening in histories of extractive research practices leveraged against communities at the margins; phrasing demographic questions to account for the complexity of identity; incorporating consent iteratively across the study; and offering incentives that were consistent with participants’ expertise of their own lived experiences. We use these reflections to further ongoing conversations about integrating equity into rhetorically inflected health research. 


 

Article Details

Section
Commentaries
Author Biographies

McKinley Green, George Mason University

McKinley Green is an Assistant Professor of English at George Mason University, where he researches technical and professional communication, queer theory, and rhetorics of health and medicine.

Val Crutcher, Youth and AIDS Projects

Val Crutcher is the Executive Director of the Youth and AIDS Projects. Val graduated from Concordia University with a B.A. in Political Science, and she began her youth-work career in 1989 and has worked with
various shelters and youth service in the Minneapolis/St. Paul area. She has been with YAP since 1998.

Océane Lune, Youth and AIDS Projects

Océane Lune, YAP’s Community Engagement Coordinator, is a Black, Queer, Non-Binary, HIV+, Louisiana native. They were diagnosed with HIV in 2005 as a homeless youth and sex worker. Since then, Océane has
been a fierce, unapologetic advocate for those impacted by HIV, especially young people, Trans*/Non-Binary folks, and Black communities.

Munira Mutmainna, George Mason University

Munira Mutmainna is a Doctoral candidate in Writing and Rhetoric and George Mason University. Her current research focuses on immigrant health rhetoric and communication in the U.S. settings.

Raquelle Lenoir, Youth and AIDS Projects

Racquelle Lenoir, the Lead Case Manager at YAP, has been working in public health for 5 years. However, most of her reward for public health is with her work in HIV. Raquelle has been a part of many different forums as well as being an educator on other health disparities.

Andrew Schuster, Youth and AIDS Projects

Andrew Schuster is the Director of Operations at YAP. With a B.A. in Communications/ Journalism and Justice/Peace Studies from the University of St. Thomas (St. Paul, MN), has gained experience in HIV advocacy, project management, community organizing, and he strives to eliminate stereotypes, stigma, and barriers to care.

Gage Urvina, Youth and AIDS Projects

Gage Urvina is the client services coordinator at YAP. Gage has worked in the field of HIV for seven years, where he strives to meet clients where they are and to help folks to establish and maintain healthy lifestyles.

Calla Brown, University of Minnesota, Department of Pediatrics and Youth and AIDS Projects

Calla Brown is an internist and pediatrician and practices primary care at a community health center in Minneapolis. She is an Assistant Professor in the Department of Pediatrics at the University of Minnesota and joined YAP in 2020. Calla is passionate about community health, human rights, and health justice.

References

References

Bailey, Moya, ., & Peoples Whitney. (2017). Articulating Black Feminist Health Science Studies. Catalyst: Feminism, Theory, Technoscience, 3(2), Article 2. https://doi.org/10.28968/cftt.v3i2.28844

Basu, Ambar, & Dutta,Mohan J. (2008). The Relationship Between Health Information Seeking and Community Participation: The Roles of Health Information Orientation and Efficacy. Health Communication, 23(1), 70–79. https://doi.org/10.1080/10410230701807121

Bay, Jennifer L. (2019). Research Justice as Reciprocity: Homegrown Research Methodologies. Community Literacy Journal, 14(1), 7–25. https://doi.org/10.1353/clj.2019.0019

Bivens, Kristin Marie (2017). Rhetorically Listening for Microwithdrawals of Consent in Research Practice. In L. Meloncon & B. Scott (Eds.), Methodologies for the Rhetoric of Health & Medicine (pp. 138–156). Routledge. https://doi.org/10.4324/9781315303758-8

CannonPeter & Walkup, Katie L. (2021). Re/producing Knowledge in Health and Medicine: Designing Research Methods for Mental Health. Technical Communication Quarterly, 30(3), 257–270. https://doi.org/10.1080/10572252.2021.1930184

Cavanaugh, Courtenay E., Hansen, Nathan B., & Sullivan, Tami P. (2010). HIV Sexual Risk Behavior Among Low-Income Women Experiencing Intimate Partner Violence: The Role of Posttraumatic Stress Disorder. AIDS and Behavior, 14(2), 318–327. https://doi.org/10.1007/s10461-009-9623-1

Chou, J. C., Schepel, I. R. M., Vo, A. T., Kapetanovic, S., & Schaff, P. B. (2021). Patient Co-Participation in Narrative Medicine Curricula as a Means of Engaging Patients as Partners in Healthcare: A Pilot Study Involving Medical Students and Patients Living with HIV. Journal of Medical Humanities, 42(4), 641–657. https://doi.org/10.1007/s10912-019-09604-7

Clandinin D. Jean(2019). Narrative Inquiry: Both a view of, and a methodology for, studying experience. In Journeys in Narrative Inquiry. Routledge.

Clandinin, D. Jean, Caine, Vera, & Lessard, Sean,. (2018). The Relational Ethics of Narrative Inquiry. Routledge. https://doi.org/10.4324/9781315268798

Clark, Tom (2008). `We’re Over-Researched Here!’: Exploring Accounts of Research Fatigue within Qualitative Research Engagements. Sociology, 42(5), 953–970. https://doi.org/10.1177/0038038508094573

Cuca, Y. P., Shumway, M., Machtinger, E. L., Davis, K., Khanna, N., Cocohoba, J., & Dawson-Rose, C. (2019). The Association of Trauma with the Physical, Behavioral, and Social Health of Women Living with HIV: Pathways to Guide Trauma-informed Health Care Interventions. Women’s Health Issues, 29(5), 376–384. https://doi.org/10.1016/j.whi.2019.06.001

David,Matthew (2002). Problems of participation: The limits of action research. International Journal of Social Research Methodology, 5, 11–17. https://doi.org/10.1080/13645570110098037

Dawson-Rose, C., Cuca, Y. P., Shumway, M., Davis, K., & Machtinger, E. L. (2019). Providing Primary Care for HIV in the Context of Trauma: Experiences of the Health Care Team. Women’s Health Issues, 29(5), 385–391. https://doi.org/10.1016/j.whi.2019.05.008

De Hertogh,Lori Beth (2018). Feminist Digital Research Methodology for Rhetoricians of Health and Medicine. Journal of Business and Technical Communication, 32(4), 480–503. https://doi.org/10.1177/1050651918780188

DeVasto, D., Graham, S. S., Card, D., & Kessler, M. (2019). Interventional Systems Ethnography and Intersecting Injustices: A New Approach for Fostering Reciprocal Community Engagement. Community Literacy Journal, 14(1), 44–64. https://doi.org/10.1353/clj.2019.0021

Dutta Mohan J. (2022). The Whiteness of the Rhetoric of Health and Medicine (RHM). Departures in Critical Qualitative Research, 11(1–2), 54–79. https://doi.org/10.1525/dcqr.2022.11.1-2.54

Ellard-Gray, A., Jeffrey, N. K., Choubak, M., & Crann, S. E. (2015). Finding the Hidden Participant: Solutions for Recruiting Hidden, Hard-to-Reach, and Vulnerable Populations. International Journal of Qualitative Methods, 14(5), 1609406915621420. https://doi.org/10.1177/1609406915621420

Filler, T., Benipal, P. K., Torabi, N., & Minhas, R. S. (2021). A chair at the table: A scoping review of the participation of refugees in community-based participatory research in healthcare. Globalization and Health, 17(1), 103. https://doi.org/10.1186/s12992-021-00756-7

Frohard-Dourlent, H., Dobson, S., Clark, B. A., Doull, M., & Saewyc, E. M. (2017). “I would have preferred more options”: Accounting for non-binary youth in health research. Nursing Inquiry, 24(1), e12150. https://doi.org/10.1111/nin.12150

Frost, E. A., Gonzales, L., Moeller, M. E., Patterson, Gp., & Shelton, C. D. (2021). Reimagining the Boundaries of Health and Medical Discourse in Technical Communication. Technical Communication Quarterly, 30(3), 223–229. https://doi.org/10.1080/10572252.2021.1931457

Gagnon, John T., & Novotny, Maria. (2020). Revisiting Research as Care: A Call to Decolonize Narratives of Trauma. Rhetoric Review, 39(4), 486–501. https://doi.org/10.1080/07350198.2020.1805558

Gonzales, Laura& Bloom-Pojar, Rachel(2018). A Dialogue with Medical Interpreters about Rhetoric, Culture, and Language. Rhetoric of Health & Medicine, 1(1–2), 193–212. https://doi.org/10.5744/rhm.2018.1002

Gonzales, L., Lewy, R., Cuevas, E. H., & Ajiataz, V. L. G. (2022). (Re)Designing Technical Documentation About COVID-19 with and for Indigenous Communities in Gainesville, Florida, Oaxaca de Juárez, Mexico, and Quetzaltenango, Guatemala. IEEE Transactions on Professional Communication, 1–16. https://doi.org/10.1109/TPC.2022.3140568

Gouge, Catherine C.(2017). Improving Patient Discharge Communication. Journal of Technical Writing and Communication, 47(4), 419–439. https://doi.org/10.1177/0047281616646749

Green, McKinley (2021). Resistance as Participation: Queer Theory’s Applications for HIV Health Technology Design. Technical Communication Quarterly, 30(4), 331–344. https://doi.org/10.1080/10572252.2020.1831615

Guevara, A. M. M., Johnson, S. L., Elam, K., Rivas, T., Berendzen, H., & Gal-Szabo, D. E. (2021). What Does it Mean to be Trauma-Informed? A Multi-System Perspective from Practitioners Serving the Community. Journal of Child and Family Studies, 30(11), 2860–2876. https://doi.org/10.1007/s10826-021-02094-z

Harper, Kimberly C.K. C. (n.d.). Tired as a Mutha: Black Mother Activists and the Fight for Affordable Housing and Health Care. Technical Communication Quarterly , 30(3), 230-240. Hodge, Felicia S. (2012). No Meaningful Apology for American Indian Unethical Research Abuses. Ethics & Behavior, 22(6), 431–444. https://doi.org/10.1080/10508422.2012.730788

Itchuaqiyaq, C. U., Edenfield, A. C., & Grant-Davie, K. (2021). Sex Work and Professional Risk Communication: Keeping Safe on the Streets: Journal of Business and Technical Communication. https://doi.org/10.1177/10506519211044190

Jarvis, Caitlyn. M. (2021). Invitational Rhetoric in Epistemic Practice: Invitational Knowledge in Infertility Support Groups. Rhetoric of Health & Medicine, 4(1). https://doi.org/10.5744/rhm.2021.1002

Johnson, Nathan. R., & Johnson, Meridith. A. (2020). Precarious Data: Affect, Infrastructure, and Public Education. Rhetoric Society Quarterly, 50(5), 368–382. https://doi.org/10.1080/02773945.2020.1814397

Jones, Natash. N. (2016). Narrative Inquiry in Human-Centered Design: Examining Silence and Voice to Promote Social Justice in Design Scenarios. Journal of Technical Writing and Communication, 46(4), 471–492. https://doi.org/10.1177/0047281616653489

Kessler, Molly. M. (2022). Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness. The Ohio State University Press. https://kb.osu.edu/handle/1811/101470

Kessler, M. M., Breuch, L.-A. K., Stambler, D. M., Campeau, K. L., Riggins, O. J., Feedema, E., Doornink, S. I., & Misono, S. (2021). User Experience in Health & Medicine: Building Methods for Patient Experience Design in Multidisciplinary Collaborations. Journal of Technical Writing and Communication, 51(4), 380–406. https://doi.org/10.1177/00472816211044498

Khan, Candy, & Chovanec, Donna. (2010). Is Participatory Action Research Relevant in the Canadian Workplace?. Journal of Contemporary Issues in Education, 5(1), 34–44. https://doi.org/10.20355/C5PK58

Lenzer, Jeanne. (2020). “Mass hysterectomies” were carried out on migrants in US detention centre, claims whistleblower. BMJ, m3615. https://doi.org/10.1136/bmj.m3615

Mertova, Patricie, & Webster, Leonard. (2019). Using Narrative Inquiry as a Research Method: An Introduction to Critical Event Narrative Analysis in Research, Teaching and Professional Practice (2nd ed.). Routledge. https://doi.org/10.4324/9780429424533

Nadeau, L., Gaulin, D., Johnson-Lafleur, J., Levesque, C., & Fraser, S. (2022). The challenges of decolonising participatory research in indigenous contexts: The Atautsikut community of practice experience in Nunavik. International Journal of Circumpolar Health, 81(1), 2087846. https://doi.org/10.1080/22423982.2022.2087846

Neufeld, S. D., Chapman, J., Crier, N., Marsh, S., McLeod, J., & Deane, L. A. (2019). Research 101: A process for developing local guidelines for ethical research in heavily researched communities. Harm Reduction Journal, 16(1), 41. https://doi.org/10.1186/s12954-019-0315-5

Pacheco, C. M., Daley, S. M., Brown, T., Filippi, M., Greiner, K. A., & Daley, C. M. (2013). Moving Forward: Breaking the Cycle of Mistrust Between American Indians and Researchers. American Journal of Public Health, 103(12), 2152–2159. https://doi.org/10.2105/AJPH.2013.301480

Paris, Django, & Winn, Maisha. T. (2014). Humanizing Research: Decolonizing Qualitative Inquiry with Youth and Communities. SAGE Publications, Inc. https://doi.org/10.4135/9781544329611

Rodriguez, Eric., & Opel, Dawn. (2020). “Vulnerable” Populations and the Presentation of Healthy People 2020. Poroi, 15(1), 17.

Rose, Emma. J. (2016). Design as Advocacy: Using a Human-Centered Approach to Investigate the Needs of Vulnerable Populations. Journal of Technical Writing and Communication, 46(4), 427–445. https://doi.org/10.1177/0047281616653494

Suen, L. W., Lunn, M. R., Katuzny, K., Finn, S., Duncan, L., Sevelius, J., Flentje, A., Capriotti, M. R., Lubensky, M. E., Hunt, C., Weber, S., Bibbins-Domingo, K., & Obedin-Maliver, J. (2020). What Sexual and Gender Minority People Want Researchers to Know About Sexual Orientation and Gender Identity Questions: A Qualitative Study. Archives of Sexual Behavior, 49(7), 2301–2318. https://doi.org/10.1007/s10508-020-01810-y

Swacha, Kathryn. Y. (2022). “I could probably live to be 100”: An Embodied Approach to Action-Oriented Research with Vulnerable Populations. Rhetoric of Health & Medicine, 5(3), Article 3. https://doi.org/10.5744/rhm.2022.50016

Teston, C., Gonzales, L., Bivens, K., & Whitney, K. (2019). Surveying Precarious Publics. Rhetoric of Health & Medicine, 2(3), 321–351. https://doi.org/10.5744/rhm.2019.1015

Tuck, Eve, & Yang, K. Wayne. (2014). R-Words: Refusing Research. In D. Paris & M. T. Winn (Eds.), Humanizing Research: Decolonizing Qualitative Inquiry with Youth and Communities (pp. 223–247). SAGE Publications, Inc. https://doi.org/10.4135/9781544329611

Walton, Rebecca, & Jones, Natasha N. (2013). Navigating increasingly cross-cultural, cross-disciplinary, and cross-organizational contexts to support social justice. Communication Design Quarterly, 1(4), 31–35. https://doi.org/10.1145/2524248.2524257

Weiss, Mitchell. G., Ramakrishna, Jayashree., & Somma, Daryl. (2006). Health-related stigma: Rethinking concepts and interventions. Psychology, Health & Medicine, 11(3), 277–287. https://doi.org/10.1080/13548500600595053

Yam, Shui-yin Sharon. (2020). Visualizing Birth Stories from the Margin: Toward a Reproductive Justice Model of Rhetorical Analysis. Rhetoric Society Quarterly, 50(1), 19–34. https://doi.org/10.1080/02773945.2019.1682182