Qualitative research: Ideal method to promote community engagement

1. Qualitative research: Ideal method to promote community engagement Maghboeba Mosavel, Ph.D. February 4, 2011 Project Empowerment Research Day

2. Overview • Why use qualitative research methods to promote community engaged methods? • Examples of qualitative data collection methods • The forgotten recruit - the community researcher

3. What counts as good research? • It corresponds to the norms of established scientific study • It will improve the lives of those who participated • It is intrinsically interesting, and will provoke and satisfy those who are curious about the questions posed

4. Who should the research be for? • It should be directly accessible to ordinary people • It should contribute to the accumulating body of knowledge for the use of other researchers • Those who participated should gain something from it in exchange for their time

5. Why use qualitative methods to conduct community-engaged research?

6. Health disparities research • Marginalized communities • Communities with historical experience with scientific misconduct • Community mistrust • “Helicopter” (Deloria, 1992), hello-goodbye research (Huberman, 1991) • Traditional research emphasizes insider-outsider phenomenon • Academic beneficiaries • Need for new approaches to address health disparities

7. Community Characterized by identification with, and emotional connection to, other members, common symbol systems, shared values and norms, mutual influence, common interest and joint commitment to meeting shared needs (Israel et al. 1994)

8. What is community-engaged research? • Occurs on a continuum • More involved than being just community-placed • From establishing advisory committees to involvement of the community at all stages of the research process

9. CBPR • Community-based participatory research (CBPR) is a partnership approach in public health • Promotes equitable partnerships that addresses social inequalities • Emphasizes public health problems of local relevance and incorporates ecological perspective

10. Some elements of qualitative research • Involvement in meaning making • In-depth understanding of a phenomenon • Focus on process • Triangulation of data • Hallmarks of community engagement • Community-academic partnerships • Participation in various phases of the research project • Various data sources/stakeholders • Fluid, flexible

11. Examples of participatory qualitative research methods

12. Town hall meetings • Theater Arts • Graphic Facilitation • Photovoice • Reflexive Journaling

13. Research using photovoice • CBPR study • Engagement prior to grant application • Needs assessment and issue selection of low-income cancer survivors • Semi-structured interviews and photovoice

14. Photovoice conceptual framework • Draws upon work of activist photographers • Integrates Paulo Freire’s approach – emphasizes sharing and speaking from own experience • Borrows from feminist theory – power accrues to those who have a voice and participate in decisions • Designed to enable people to produce and discuss photographs as a means of catalyzing and documenting change

15. Photovoice with cancer survivors • Rationale for using photovoice • Training (capacity and relationship building) • Data analysis • Community education • Survivor empowerment • Sharing of narratives

16. Process • Peer-driven recruitment • Training • Rationale for using photovoice • Issues of power and ethics when taking pictures • Minimizing risks • Asked to take pictures of people, things, places that help tell the story of gaps and assets • Collected Fuji cameras; developed film

17. Analysis • Identify salient pictures • Explain • Group verification, modification • Outcomes • Photovoice exhibition • Assisted with planning for programming • Informed framing and scope of other research questions • Education and advocacy • Identify new cadre of local citizens willing to engage in research

18. “Before becoming a part of [this] project, I turned down many invitations to be involved in research or clinical trials, thinking that was for someone else to do or benefit from. Especially being an African American, I thought of the Tuskegee experiment on unsuspecting African American men and its horrific outcome and surely didn’t want any part of being another guinea pig. [The researcher] did a wonderful and expansive job of broadening my understanding of research and its benefits. As a part of her group, it was good to learn about the history of research, dialog with other cancer survivors, share stories, exchange support, empower and inspire each other, and examine new ways to reduce disparities for cancer survivors, caregivers, and professionals by interviewing and collecting data. Also, her Photo Voice Project forced me to reflect back on my cancer experience thru the eyes of a camera lens instead of thru the eyes of fear and doom. Positivity replaced negativity. There was a definite paradigm shift in my thinking. I took pictures of alive, colorful, and vibrant things and I still focus on them today. I notice the spring bulbs coming up now instead of how cold it is. I see life; not death. Because of this involvement, I am eager to participate in other research projects and realize the benefits are twofold. [Research] can change my life as well as others.”Bernadette

19. Chaos from cancer

20. Self-image

21. Importance of faith

22. Exploring prevention

23. Sustainability • Survivors on a Mission – group formed to address psychosocial needs of cancer survivors in low-income neighborhoods • Participant Activism – increased activism, volunteerism amongst participants

24. The community researcher

25. Background • International health research project in South Africa • Identified and trained seven lay persons to conduct semi-structured interviews with mothers and daughters

26. Community researchers • Lay persons - shared lived experience with research participants • Female; age range: 22-40 • Employment: 3 worked part-time, others unemployed • Emotional turmoil of community researchers • Research demands

27. Qualitative research - Blurring of the lines • Sharing attributes with the participants can blur the line between researcher and research subject (Kanuha, 2000) • Emotional distance is a barrier to conducting more engaged and compassionate science (Bondi, 2003; Guillemin & Heggen, 2009) • Many funding agencies and centers of scientific research adhere to scientific positivism

28. Problem • The effects of research that emphasizes a scientific objectivity and neutrality while exposing community researchersto the highly subjective world of community life and suffering • Gap in the literature about the impact of conducting research on the community researcher

29. The use of reflexive journaling • Journaling has been used in several different contexts • Benefits, including effective self-reflection and increased awareness, have been well documented

30. About the money “This study was an eye opener and a feeding scheme to me. I could reflect to my own abilities and improve on the shortage in my life. Oh yes, of course, a feeding scheme not just because I received a package at the end of the month – no but a feeding scheme that I can eat off and share the delicious food and puddings with my family, my household, and my neighbors, friends, and fellow residents."

31. Mastering the research process "I’ve called one mother; her husband answered and went down my throat immediately. He wanted to know who I was, where I’m staying, and what I want.” "I received two pairs of interviews that I had to do from Rachel (coordinator). I finished my first pair on the 22 November and the other pair on 23 November. It was so exciting for me finishing it in two days. I just hope my work is up to standard and that there won’t be any complaints”

32. Personal affects “You know, research is something that community people believe and think is for educated people and rich people. You know when you visit these homes you definitely change and put yourself in their situations, they become a part of you. And whatever they tell you it affects you big time."

33. Community awareness "….when you open your eyes in the morning you hear about someone who has been murdered last night or a baby girl who was raped by a grown man. I think it’s because of this place we’re living in, that makes me so depressed. Maybe I’m too emotional but everything is getting too much to bear"

34. Empowerment "What is going to happen to them [the young girls that I Interviewed]? This project has brought issues to my attention that is really affecting our community. Late this year I joined a community health forum and I was nominated as secretary of the forum."

35. Why use journaling? • In response to the difficulty dealing with the intensity of the emotional and social context of those interviewed • It was explained that this process might help them cope with some of their experiences • Asked a local colleague and psychologist to facilitate regular debriefing meetings with the community researchers

36. Process • Obtained IRB approval • Written informed consent from community researchers • Journals collected at the end of the study • Draft manuscript provided to them for feedback

37. Themes • Provided much-needed income • Innumerable challenges mastering the research process • Has a profound personal impact • Sharply heightened their sense of social and economic conditions • Source of self-empowerment

38. Lessons learned • Journaling could have been used as a means of increasing critical consciousness • Opportunity for discussion of power relations between researcher and researched • Inadequate discussion regarding confidentiality, privacy, and ownership of data

39. Ethical challenges • Confidentiality and privacy • Protection of community/interests of academic partner • Discussion, interpretation, and dissemination of results • Tangible benefits of research to community

40. Benefits of community-engaged research • Achieving adequate sample size in communities mistrustful of research • Accounting for interactions from the many factors in discriminated communities that contribute to ill health • Designing alternative models to the standard intervention study • Identifying potential bias when working within an informed and value-centered research context (Hynes and Brugge, 2005)

41. Contact information:Maghboeba Mosavel mmosavel@vcu.edu 804-628-2929

42. References • Deloria, V. (1992). God is red: A native view of religion. Golden, CO: North American Press. • Huberman, M. (1991). Linkage between researchers and practitioners: A qualitative study. American Educational Research Journal, 27,363–391. • Kanuha, V. (2000). "Being native" versus "going native": Conducting social work as an insider. Social Work, 45(5), 439-447. • Bondi, L. (2003). Empathy and identification: conceptual resources for feminist fieldwork. ACME: An International E-Journal for Critical Geographies, 2(1), 64-76. • Guillemin, M., & Heggen, K. (2009). Rapport and respect: negotiating ethical relations between researcher and participant. Medicine, Health Care, and Philosophy, 12(3), 291-299. • Israel, B., Schulz, A., Estrada-Martinez, L., Zenk, S., Viruell-Fuentes, E., Villarruel, A., et al. (2006). Engaging urban residents in assessing neighborhood environments and their implications for health. Journal of Urban Health: Bulletin of the New York Academy of Medicine, 83(3), 523-539. • Mosavel, M., Simon, C., van Stade, D., & Buchbinder, M. (2005). Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question. Social Science and Medicine, 61(12), 2577-2587. • Simon, C., & Mosavel, M. (2010). Community members as recruiters of human subjects: ethical considerations. American Journal of Bioethics, 10(3), 3-11. • Mosavel, M.and Sanders, K. (2010). Photovoice: A needs assessment of African-American cancer survivors, Journal of Psychosocial Oncology Nov, 28 (6) 640-43. • Mosavel, M., Simon, C (2010) Exploratory Health Disparities Research: The need to provide a tangible benefit to vulnerable respondents. Journal of Ethics and Behavior, 20 (1), 1-9. • Mosavel, M., Thomas, T., Sanders, K., Hill, L., Johnson, M. (2010). The Mother-Daughter Health Collaborative: A Partnership Development to Promote Cancer Education. Journal of Cancer Education, 25 (1) • Mosavel, M.and Thomas, T. (2009) Project REECH: Using Theater Arts to Authenticate Local Knowledge. Journal of New Solutions A Journal of Environmental and Occupational Health Policy, Volume 19, Issue 4. pp 407-422. • Minkler, M. and Wallerstein, N. (2008). Community-Based Participatory Research for Health: From Process to Outcomes (editors), Second Edition, Jossey Bass, John Wiley and Sons, • Parker, I. (2005) Qualitative Psychology: Introducing Radical Research, Open University Press, England • Brugge, D. and Hynes, HP (editors) Community research in environmental health: studies in science, advocacy and ethics, Ashgate Publishing Company, USA