Community engagement in Canadian health and social science research: Field reports on four studies

  • Andrew Eaton University of Toronto
Keywords: community engagement, peer researchers, community-based participatory research, HIV/AIDS, Canada

Abstract

Community engagement is a hallmark of Canadian health and social science research, yet we lack detailed descriptions of pragmatic peer engagement possibilities. People personally affected by a study’s topic can actively contribute to design, data collection, intervention delivery, analysis, and dissemination yet the nature and scope of involvement can vary based on context. The shift from academic to community-based research teams, where peers who share participant identities assume a leadership role, may be attributed to the HIV/AIDS response where community co-production of knowledge has been a fundamental component since the epidemic’s onset. This article discusses four health and social science studies from a community-based participatory research (CBPR) framework and synthesizes the strengths and limitations of community engagement across these endeavours to offer lessons learned that may inform the design of future CBPR projects.

Author Biography

Andrew Eaton, University of Toronto

Andrew D. Eaton is a Ph.D. Candidate and Research Director at the Factor-Inwentash Faculty of Social Work at the University of Toronto. He is a cisgender male heterosexual Caucasian, middle-class settler. He is the Ontario HIV Treatment Network’s (OHTN) Endgame Student Leader in HIV-Associated Neurocognitive Disorder and Psychosocial Interventions. Email: andrew.eaton@utoronto.ca 

References

Abimbola, S. (2019). Beyond positive a priori bias: Reframing community engagement in LMICs. Health Promotion International, 35(3), 598-609. https://doi.org/10.1093/heapro/daz023

Anderson-Lewis, C., Cuy-Castellanos, D., Byrd, A., Zynda, K., Sample, A., Blakely Reed, V., Beard, M., Minor, L., & Yadrick, K. (2012). Using mixed methods to measure the perception of community capacity in an academic-community partnership for a walking intervention. Health Promotion Practice, 13(6), 788-796. https://doi.org/10.1177/1524839911404230

Andrews, J. O., Tingen, M. S., Jarriel, S. C., Caleb, M., Simmons, A., Brunson, J., Mueller, M., Ahluwalia, J. S., Newman, S. D., Cox, M. J., Magwood, G., & Hurman, C. (2012). Application of a CBPR framework to inform a multi-level tobacco cessation intervention in public housing neighborhoods. American Journal of Community Psychology, 50(1-2), 129-140. https://doi.org/10.1007/s10464-011-9482-6

Bassett-Jones, N., & Lloyd, G. C. (2005). Does Herzberg’s motivation theory have staying power? Journal of Management Development, 24(10), 929-943. https://doi.org/10.1108/02621710510627064

Brush, B.L., Mentz, G., Jensen, M., Jacobs, B., Saylor, K.M., Rowe, Z., Israel, B.A. & Lachance, L. (2019). Success in long-standing community-based participatory research (CBPR) partnerships: A scoping literature review. Health Education & Behavior, 47(4), 556-568. https://doi.org/10.1177/1090198119882989

Bush, E. J., Singh, R. L., & Kooienga, S. (2019). Lived experiences of a community: Merging interpretive phenomenology and community-based participatory research. International Journal of Qualitative Methods, 18. https://doi.org/10.1177/1609406919875891

Canadian Institutes of Health Research (CIHR). (2016). CIHR HIV/AIDS community-based research. Retrieved from www.cihr-irsc.gc.ca/e/25835.html

Cashman, S. B., Adeky, S., Allen, A. J., 3rd, Corburn, J., Israel, B. A., Montano, J., Rafelito, A., Rhodes, S. D., Swanston, S., Wallerstein, N., & Eng, E. (2008). The power and the promise: Working with communities to analyze data, interpret findings, and get to outcomes. American Journal of Public Health, 98(8), 1407-1417. https://doi.org/10.2105/AJPH.2007.113571

Cene, C. W., Haymore, L. B., Enga, Z., Sallah, S. H., Ritchwood, T., Wynn, M., Ellis, D., & Corbie-Smith, G. (2015). Data collection and management in community-engaged research: Lessons learned from two community-based participatory research partnerships. Progress in Community Health Partnerships: Research, Education, and Action, 9(3), 413-422. https://doi.org/10.1353/cpr.2015.0057

Chan Carusone, S., O’Leary, B., McWatt, S., Stewart, A., Craig, S. L., & Brennan, D. J. (2017). The lived experience of the hospital discharge “plan”: A longitudinal qualitative study of complex patients. Journal of Hospital Medicine, 12(1), 5-10. https://doi.org/10.1002/jhm.2671

Chen, P. G., Diaz, N., Lucas, G., & Rosenthal, M. S. (2010). Dissemination of results in community-based participatory research. American Journal of Preventive Medicine, 39(4), 372-378. https://doi.org/10.1016/j.amepre.2010.05.021

Collins, S.E., Clifasefi, S.L., Stanton, J., Straits, K.J., Gil-Kashiwabara, E., Rodriguez Espinosa, P., Nicasio, A.V., Andrasik, M.P., Hawes, S.M., Miller, K.A. & Nelson, L.A. (2018). Community-based participatory research (CBPR): Towards equitable involvement of community in psychology research. American Psychologist, 73(7), 884-898. https://doi.org/ 10.1037/amp0000167

Craig, S. L., McInroy, L. B., D’Souza, S., Austin, A., McCready, L. T., Eaton, A. D., Shade, L. R., & Wagaman, M. A. (2017). Influence of information and communication technologies on the resilience and coping of sexual and gender minority youth in the United States and Canada (Project #Queery): Mixed methods survey. JMIR Research Protocols, 6(9), e189. https://doi.org/10.2196/resprot.8397

De Weger, E., Van Vooren, N., Luijkx, K. G., Baan, C. A., & Drewes, H. W. (2018). Achieving successful community engagement: a rapid realist review. BMC Health Services Research, 18(1), 285. https://doi.org/10.1186/s12913-018-3090-1

Devotta, K., Woodhall-Melnik, J., Pedersen, C., Wendaferew, A., Dowbor, T. P., Guilcher, S. J., Hamilton-Wright, S., Ferentzy, P., Hwang, S. W., & Matheson, F. I. (2016). Enriching qualitative research by engaging peer interviewers: A case study. Qualitative Research, 16(6), 661-680. https://doi.org/10.1177/1468794115626244

Dickson-Gomez, J., Corbett, A. M., Bodnar, G., Zuniga, M. O., Guevara, C. E., Rodriguez, K., & Navas, V. (2016). Context and group dynamics in a CBPR-developed HIV prevention intervention. Health Promotion International, 31(1), 93-105. https://doi.org/10.1093/heapro/dau058

Eaton, A. D. (2019). Filmed simulation to train peer researchers in community-based participatory research. Social Work Research, 43(3), 195-199.

https://academic.oup.com/swr/article-abstract/43/3/195/5550914

Eaton, A. D., Cattaneo, J. S., Watchorn, J. M., Bilbao-Joseph, C., Bowler, S., Hazelton, M., Myslik, J., Ross, A., & Chambers, L. (2017a). From serodiscordant to magnetic: The feasibility and acceptability of a pilot psychoeducational group intervention designed to improve relationship quality. Social Work with Groups, 41(4), 323-335. https://doi.org/10.1080/01609513.2017.1369922

Eaton, A. D., Chan Carusone, S., Craig, S. L., Telegdi, E., McCullagh, J. W., McClure, D., Wilson, W., Zuniga, L., Berney, K., Ginocchio, G. F., Wells, G. A., Montess, M., Busch, A., Boyce, N., Strike, C., & Stewart, A. (2019a). The ART of conversation: Feasibility and acceptability of a pilot peer intervention to help transition complex HIV-positive people from hospital to community. BMJ Open, 9(3), e026674. https://doi.org/10.1136/bmjopen-2018-026674

Eaton, A. D., Craig, S. L., & Wallace, R. (2017b). The intersecting cognitive and aging needs of HIV-positive older adults: Implications for social work practice. Social Work in Health Care, 56(8), 733-747. https://doi.org/10.1080/00981389.2017.1339759

Eaton, A. D., Ibáñez-Carrasco, F., Craig, S. L., Carusone, S. C., Montess, M., Wells, G. A., & Ginocchio, G. F. (2018a). A blended learning curriculum for training peer researchers to conduct community-based participatory research. Action Learning: Research and Practice, 15(2), 139-150. https://doi.org/10.1080/14767333.2018.1462143

Eaton, A. D., Tsang, A. K. T., Craig, S. L., & Ginocchio, G. F. (2018b). Peer researchers in post-professional healthcare: A glimpse at motivations and partial objectivity as opportunities for action researchers. Action Research, 17(4), 591-609. https://doi.org/10.1177/1476750318811913

Eaton, A. D., Walmsley, S. L., Craig, S. L., Rourke, S. B., Sota, T., McCullagh, J. W., & Fallon, B. A. (2019b). Protocol for a pilot randomised controlled trial evaluating feasibility and acceptability of cognitive remediation group therapy compared with mutual aid group therapy for people ageing with HIV-associated neurocognitive disorder (HAND) in Toronto, Canada. BMJ Open, 9(10), e033183. https://doi.org/10.1136/bmjopen-2019-033183

Eder, M. M., Evans, E., Funes, M., Hong, H., Reuter, K., Ahmed, S., Calhoun, K., Corbie-Smith, G., Dave, G., DeFino, M., Harwood, E., Kissack, A., Kleinman, L. C., & Wallerstein, N. (2018). Defining and measuring community engagement and community-engaged research: Clinical and translational science institutional practices. Progress in Community Health Partnerships: Research, Education, and Action, 12(2), 145-156.

Erlingsson, C., & Brysiewicz, P. (2017). A hands-on guide to doing content analysis. African Journal of Emergency Medicine, 7(3), 93-99. https://doi.org/10.1016/j.afjem.2017.08.001

Fekete, C., Segerer, W., Gemperli, A., Brinkhof, M. W., & Swi, S. C. I. S. G. (2015). Participation rates, response bias and response behaviours in the community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). BMC Medical Research Methodology, 15(1), 80. https://doi.org/10.1186/s12874-015-0076-0

Fletcher, F., Hammer, B., & Hibbert, A. (2014). “We know we are doing something good, but what is it?”: The challenge of negotiating between service delivery and research in a CBPR project. Journal of Community Engagement and Scholarship, 7(2). https://digitalcommons.northgeorgia.edu/jces/vol7/iss2/3

Garcia, C. M., Gilchrist, L., Campesino, C., Raymond, N., Naughton, S., & de Patino, J. G. (2008). Using community-based participatory research to develop a bilingual mental health survey for Latinos. Progress in Community Health Partnerships: Research, Education, and Action, 2(2), 105-120. https://doi.org/10.1353/cpr.0.0011

Gonzalez, J., & Trickett, E. J. (2014). Collaborative measurement development as a tool in CBPR: Measurement development and adaptation within the cultures of communities. American Journal of Community Psychology, 54(1-2), 112-124. https://doi.org/10.1007/s10464-014-9655-1

Hacker, K. (2013). Community-based participatory research. Sage.

Hodgson, D. L. (1999). Critical interventions: Dilemmas of accountability in contemporary ethnographic research. Identities Global Studies in Culture and Power, 6(2-3), 201-224. https://doi.org/10.1080/1070289X.1999.9962643

Ibáñez-Carrasco, F., Watson, J. R., & Tavares, J. (2019). Supporting peer researchers: Recommendations from our lived experience/expertise in community-based research in Canada. Harm Reduction Journal, 16(1), 55. https://doi.org/10.1186/s12954-019-0322-6

Israel, B. A., Coombe, C. M., Cheezum, R. R., Schulz, A. J., McGranaghan, R. J., Lichtenstein, R., Reyes, A. G., Clement, J., & Burris, A. (2010, Nov). Community-based participatory research: a capacity-building approach for policy advocacy aimed at eliminating health disparities. American Journal of Public Health, 100(11), 2094-2102. https://doi.org/10.2105/AJPH.2009.170506

Jenkins, E. K., Kothari, A., Bungay, V., Johnson, J. L., & Oliffe, J. L. (2016). Strengthening population health interventions: Developing the CollaboraKTion framework for community-based knowledge translation. Health Research Policy and Systems, 14(1), 65. https://doi.org/10.1186/s12961-016-0138-8

Johnson-Shelton, D., Moreno-Black, G., Evers, C., & Zwink, N. (2015). A community-based participatory research approach for preventing childhood obesity: The communities and schools together project. Progress in Community Health Partnerships: Research, Education, and Action, 9(3), 351-361. https://doi.org/10.1353/cpr.2015.0056

Jull, J., Giles, A., & Graham, I. D. (2017). Community-based participatory research and integrated knowledge translation: Advancing the co-creation of knowledge. Implementation Science, 12(1), 150. https://doi.org/10.1186/s13012-017-0696-3

Kaida, A., Carter, A., Nicholson, V., Lemay, J., O'Brien, N., Greene, S., Tharao, W., Proulx-Boucher, K., Gormley, R., Benoit, A., Bernier, M., Thomas-Pavanel, J., Lewis, J., de Pokomandy, A., Loutfy, M., Abdul-Noor, R., Anema, A., Angel, J., Bakombo, D. M., … & Zhu, J. L. (2019). Hiring, training, and supporting peer research associates: Operationalizing community-based research principles within epidemiological studies by, with, and for women living with HIV. Harm Reduction Journal, 16(1), 47. https://doi.org/10.1186/s12954-019-0309-3

Liboro, R. M., Ibáñez-Carrasco, F., Rourke, S. B., Eaton, A. D., Medina, C., Pugh, D., Rae, A., Ross, L. E., & Shuper, P. A. (2018). Barriers to addressing HIV-associated neurocognitive disorder (HAND): Community-based service provider perspectives. Journal of HIV/AIDS & Social Services, 17(3), 209-223. https://doi.org/10.1080/15381501.2018.1431168

Lichtveld, M., Kennedy, S., Krouse, R. Z., Grimsley, F., El-Dahr, J., Bordelon, K., Sterling, Y., White, L., Barlow, N., DeGruy, S., Paul, D., Denham, S., Hayes, C., Sanders, M., Mvula, M. M., Thornton, E., Chulada, P., Mitchell, H., Martin, W. J., 2nd, Stephens, K. U., & Cohn, R. D. (2016). From design to dissemination: Implementing community-based participatory research in postdisaster communities. American Journal of Public Health, 106(7), 1235-1242. https://doi.org/10.2105/AJPH.2016.303169

Lile, J., & Richards, L. (2016). Youth as interviewers: Methods and findings of participatory peer interviews in a youth garden project. Journal of Adolescent Research, 33(4), 496-519. https://doi.org/10.1177/0743558416670009

McAllister, C. L., Green, B. L., Terry, M. A., Herman, V., & Mulvey, L. (2003). Parents, practitioners, and researchers: Community-based participatory research with early head start. American Journal of Public Health, 93(10), 1672-1679. https://doi.org/10.2105/ajph.93.10.1672

McCambridge, J., Witton, J., & Elbourne, D. R. (2014). Systematic review of the Hawthorne effect: New concepts are needed to study research participation effects. Journal of Clinical Epidemiology, 67(3), 267-277. https://doi.org/10.1016/j.jclinepi.2013.08.015

McDavitt, B., Bogart, L., Mutchler, M., Wagner, G., Green, H. J., Lawrence, S., Mutepfa, K., & Nogg, K. (2016). Dissemination as dialogue: Building trust and sharing research findings through community engagement. Preventing Chronic Disease, 13. https://doi.org/10.5888/pcd13.150473

Minkler, M. (2005). Community-based research partnerships: challenges and opportunities. Journal of Urban Health, 82(2), ii3-ii12. https://doi.org/10.1093/jurban/jti034

Moen, T. (2006). Reflections on the narrative research approach. International Journal of Qualitative Methods, 5(4), 56-69. https:doi.org/10.1177/160940690600500405

Morse, J. M. (2010). Simultaneous and sequential qualitative mixed method designs. Qualitative Inquiry, 16(6), 483-491. https://doi.org/10.1177/1077800410364741

Musesengwa, R., & Chimbari, M. J. (2017). Experiences of community members and researchers on community engagement in an Ecohealth project in South Africa and Zimbabwe. BMC Medical Ethics, 18(1), 76. https://doi.org/10.1186/s12910-017-0236-3

Newman, S. D., Gillenwater, G., Toatley, S., Rodgers, M. D., Todd, N., Epperly, D., & Andrews, J. O. (2014). A community-based participatory research approach to the development of a Peer Navigator health promotion intervention for people with spinal cord injury. Disability and health journal, 7(4), 478-484. https://doi.org/10.1016/j.dhjo.2014.04.006

Nowell, L. S., Norris, J. M., White, D. E., & Moules, N. J. (2017). Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods, 16(1). https://doi.org/10.1177/1609406917733847

Ontario HIV Treatment Network (OHTN). (2016). Funding guidelines: OHTN community-based research and evaluation fund. Retrieved from www.ohtn.on.ca/wp-content/uploads/2016/01/OHTN-CBR-And-Evaluation-Guidelines-January-2016.pdf

Owens, C., Farrand, P., Darvill, R., Emmens, T., Hewis, E., & Aitken, P. (2011). Involving service users in intervention design: A participatory approach to developing a text-messaging intervention to reduce repetition of self-harm. Health Expectations, 14(3), 285-295. https://doi.org/10.1111/j.1369-7625.2010.00623.x

Pawlowski, C. S., Winge, L., Carroll, S., Schmidt, T., Wagner, A. M., Nortoft, K. P. J., Lamm, B., Kural, R., Schipperijn, J., & Troelsen, J. (2017). Move the neighbourhood: Study design of a community-based participatory public open space intervention in a Danish deprived neighbourhood to promote active living. BMC Public Health, 17(1), 481. https://doi.org/10.1186/s12889-017-4423-4

Rhodes, S. D., Malow, R. M., & Jolly, C. (2010). Community-based participatory research: A new and not-so-new approach to HIV/AIDS prevention, care, and treatment. AIDS Education and Prevention, 22(3), 173-183. https://doi.org/10.1521/aeap.2010.22.3.173

Riffin, C., Kenien, C., Ghesquiere, A., Dorime, A., Villanueva, C., Gardner, D., Callahan, J., Capezuti, E., & Reid, M. C. (2016). Community-based participatory research: understanding a promising approach to addressing knowledge gaps in palliative care. Annals of Palliative Medicine, 5(3), 218-224. https://doi.org/10.21037/apm.2016.05.03

Sachau, D. (2007). Resurrecting the motivation-hygiene theory: Herzberg and the positive psychology movement. Human Resource Development Review, 6(4), 377-393. https://doi.org/10.1177/1534484307307546

Strauss, A., & Corbin, J. (1994). Grounded theory methodology: An overview. In N. Denzin & Y. Lincoln (Eds.), Handbook of qualitative research (1st ed., pp. 273-284). Sage.

Strong, L. L., Israel, B. A., Schulz, A. J., Reyes, A., Rowe, Z., Weir, S. S., & Poe, C. (2009). Piloting interventions within a community-based participatory research framework: Lessons learned from the healthy environments partnership. Progress in Community Health Partnerships: Research, Education, and Action, 3(4), 327-334. https://doi.org/10.1353/cpr.0.0094

Tapp, H., White, L., Steuerwald, M., & Dulin, M. (2013). Use of community-based participatory research in primary care to improve healthcare outcomes and disparities in care. Journal of Comparative Effectiveness Research, 2(4), 405-419. https://doi.org/10.2217/cer.13.45

Tesavrita, C., & Suryadi, D. (2012). Identification of Herzberg’s motivator-hygiene factors for SME’s workers: Case study of SME in Bandung, Indonesia. Procedia Economics and Finance, 4, 299-303. https://doi.org/10.1016/S2212-5671(12)00344-9

Tremblay, M. C., Martin, D. H., McComber, A. M., McGregor, A., & Macaulay, A. C. (2018). Understanding community-based participatory research through a social movement framework: A case study of the Kahnawake Schools Diabetes Prevention Project. BMC Public Health, 18(1), 487. https://doi.org/10.1186/s12889-018-5412-y

Unertl, K. M., Schaefbauer, C. L., Campbell, T. R., Senteio, C., Siek, K. A., Bakken, S., & Veinot, T. C. (2016). Integrating community-based participatory research and informatics approaches to improve the engagement and health of underserved populations. Journal of the American Medical Informatics Association, 23(1), 60-73. https://doi.org/10.1093/jamia/ocv094

Wallerstein, N. B., & Duran, B. (2006). Using community-based participatory research to address health disparities. Health Promotion Practice, 7(3), 312-323. https://doi.org/10.1177/1524839906289376

Ward, M., Schulz, A. J., Israel, B. A., Rice, K., Martenies, S. E., & Markarian, E. (2018). A conceptual framework for evaluating health equity promotion within community-based participatory research partnerships. Evaluation and Program Planning, 70, 25-34. https://doi.org/10.1016/j.evalprogplan.2018.04.014

Published
2021-04-15
How to Cite
Eaton, A. (2021). Community engagement in Canadian health and social science research: Field reports on four studies. Engaged Scholar Journal: Community-Engaged Research, Teaching, and Learning, 6(2), 118-134. https://doi.org/10.15402/esj.v6i2.70165
Section
Reports from the Field