Ethical Reflexivity in CBR

1. Ethical Reflexivity in CBR UNPACKING THE  IMPLICATIONS OF ENGAGING COMMUNITY MEMBERS AS CO-RESEARCHERS Sarah Flicker, Adrian Guta, Brenda Roche

2. Agenda • Definitions- CBR, PR, Reflexivity • Peer Research Study • Surfacing the theory of “Peer Research” • When paradigms collide: The Business of CBR • From Transactional to Relational • Discussion

3. Definitions • How are we defining CBR, PR, and Reflexivity today.

4. Community-Based Research: “...collaborativeapproach to research that equitably involves all partners in the research process and recognizes the unique strengthsthat each brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change to improve community health and eliminate health disparities.” The W. K. Kellogg Community Health Scholars Program definition from Minkler, M. & Wallerstein, N. (2003) Community-Based Participatory Research for Health. Jossey-Bass

5. Reflexivity in CBR

6. Involvement

8. Peer Research • Peer researchers are member of the target community being studied who are trained to participate as co-researchers. Community members contribute their expertise by providing lived experience, divergent perspectives, and alternative approaches. Tait, L., & Lester, H. (2005). Encouraging user involvement in mental health services. Adv Psychiatr Treat, 11(3), 168-175.

9. Peer Research Study • To examine the process of bringing together peer researchers from various contexts. • Compare the theory of Peer Research with the actual practice Peer Research • Explore ethical, social and practical issues that are unique to Peer Research models. .

10. Method • Participants were recruited from Wellesley Institute funded projects involving members from diverse communities • Individuals with a lived experience of homelessness, HIV/AIDS, Newcomers/Immigrants, Trans-women, and psychiatric consumer/survivors. The projects reviewed employed diverse methodologies and had varying levels of PR engagement (participation and autonomy). • 18 in depth interview with Peer Researchers from various project & 2 focus groups with community based researchers and service providers.

11. Analysis Interviews and focus groups were recorded and transcribed. As we begin the formal analysis, we wanted to highlight some early observations that have emerged in the interviews focus groups, and the materials developed for peer research studies. Our analysis begins with the following focus: • According to general codes, themes and sub-themes • Comparisons will be made between members of the same research team (intra-group) • Comparisons will also be made between research projects (inter-group) • Comparisons will be made by range and type of involvement of peer researchers

12. Surfacing Theory • Evolution of CBR • Separation of Theory and Practice

14. Distillation • Driving concepts in ‘Peer Research’ • ‘inclusiveness’ and ‘partnership’ • ‘lived experience’ • ‘empowerment’

15. “Not just a collaborative way of working, [it] has ideological value working with people to create meaning” • “Having people from the community being the ones interviewing street youth – I think – will bring a higher level of honesty and comfort” Researchers

16. “ I think overall the use peer research is invaluable.. Just because there’s an instant bond there. You know, you’re.. when you talk to them on the telephone, making it the first interview process, you disclose that you’re positive and there’s an instant bond. You both speak the same language. Uh, you know the same problems” PR “I think the term ‘peer’ is almost misleading, or not sort of defined… because does the mean.. Yes I’ve had that experience but does that mean that I am a peer of everyone that has had that experience? I mean it is something that we have in common… but I’m not… I think the word peer is somewhat misleading because it involves.. It suggests some type of relationship or further understanding..” PR

18. “…the ground work was there, and was going towards there, so it was very easy for me to sort of take on, when I started, there was a couple of other triggers that sort of led to that, our sort of strategic decision to adopt this peer researcher model of research, within community based, we were, there was sort of struggling with some of our community based research projects, where community members were feeling that their participation was very nominal, they were sitting on reference groups or advisory committees, they would be sometimes only contacted later on, so we wanted to find a better, more inclusive democratic model…”Researcher

19. When paradigms collide

20. Planning • Whose idea? • Peer researcher point of entry • Participatory, centralized, skills • Defining roles and responsibilities • Investigators • Interviewer • Advisory • Staff

21. “I didn’t have much of a role in planning or informing the process, uh, not really, I mean aside from just sort of reviewing what was in the questionnaire or the resource schedule…and we had some sessions where we all looked at it and they sort of changed some questions around based on the input of the peer researchers.” • Peer Researcher

22. “People need to know where they stand and people also need to know that we all understand each other’s roles in the same way. They are important conversations to have. … just to feel out how people understood the roles in terms of hierarchy and power ….I mean it’s not power over in terms of you’re a lesser of a person because you don’t have letters behind your name or anything like that.” Researcher

23. Training • Who gets trained? • What does training entail? • One off, ongoing?

24. “…like right at the beginning we did a bunch of formalized training sessions… and you know, on, what is community based research, what is a survey, and then some of the ethics, and how to actually administer a survey, and then also, what do you do with difficult scenarios, how do you deal with crises, all those kinds of things, uhm, and then we had weekly meetings as well, that were part partly to just sort of, logistics, like to schedule people, to pay them etc, but then the other piece of them was to debrief, to kind of do training, to be like “what’s happening that’s difficult, how do we deal with it?”, like problems solve, that kind of stuff, so that was kind of the ongoing training piece.” • Researcher

25. Data collection • Timelines • Supervision • Preparation

26. They set-up interviews for us and they explained to us what’s gonna…what we’re gonna do and how we’re gonna do it and how much time we’re going to allot ourselves time to cover this….” Peer Researcher “So we had to find out all about the drop-ins, shelters, and whatever. …So, we created our flyers, we went out in two’s. Then when we facilitated, if there were five people, each one get equal share. Because you do facilitation, then you do note taking …”Peer Researcher

27. Analysis • Skill sets • Process • Who is involved, when • Timelines

28. “Yeah, we had a few sessions after - after all of the site visits were done- we had a few sessions were we…they provided sort of a mini report on the breakdown of the numbers, and we sort of divided into little groups and focused on sections and we just wrote different comments about, you know, what does that number look like, what could be done with that data, like, what kind of argument could you make for, you know, expanding programs, or just, you know, the issue in general.” PR “…one of the places where I don’t think this project is as strong as I think it could have been is around the analysis, how you do a kind of analysis of what becomes text based material, cuz after you’ve got stuff transcribed, …how do you do that with a group of people who don’t relate easily to text, so that feels to me that its not only a problem with, that it’s a bigger problem, and I don’t have a lot of wisdom on it…” Researcher

29. Dissemination • Form • Frequency • Spokesperson • Appropriate messenger • Who is the audience • What is the message?

30. “…the one other thing that I think I would like to do differently …uhm, is to have people more, to work more intensively with like a few people, like one-on-one…who are interested in getting more, so, to give people more opportunities to be involved in kind of, crafting the messages, kind of helping put together actual written pieces, so, not necessarily that they have to do the writing, but that you’re really working with them, … but, I think that’s a whole other set of skills that fewer people want, like, I don’t know that all of our peer researcher team is gonna be interested doing that, but I think there are some people who could really, who would be interested and able, and could get a lot out of that, cuz that’s the part that I feel people didn’t have enough opportunities to be involved in…” Researcher

31. “We had like 200 people come in …at some convention here in Toronto, and they were dying to meet us, yes. That was nice. It was scary.” PR “Well, like I said, it’s their gig, and … and I just was a peer researcher working alongside them …I would have done it differently. I would have… Maybe it’s cause I don’t see it’s … To me it’s like playing a game. I think it’s more ethical to release it and go ‘yeah, this is what it is’, and let other organizations and groups take this information and go do what they want with it.” PR

32. Well, I guess it’s hard to say at this point because I haven’t seen anything since. Like, in terms of what they’re developing, or what their report’s going to look like, or what they’re going to discuss in it exactly. I’m not even sure. I don’t know if other people have been included in that as of yet, but my only understanding is that they going to launch it at some point in the middle of September.… We’ll have to see at that point.” PR

33. From Transactional to Relational • Ethical Context • Ethical Issues Which Emerged • Support: What PRs Needed/What Researchers provided. • Towards a relational model.

34. CBR REB Content Analysis • We conducted a Canada-wide assessment of REB documentation for their sensitivity to CBR methodologies, processes and outcomes. • We: (1) collected relevant REB documentation from a sample of REBs across Canada, (2) analyzed and scored them for CBR related criteria, and (3) searched for best practices in relation to CBR. • In total, we reviewed the forms of 80 institutions (8 of which had 2 types of forms) with a sample of 88 forms.

35. Lack of Community

36. …but we’re just asking about process…. • …but we’re just hiring them to do focus groups, administer a questionnaire, help recruit….

37. Ethical Issues • As framed by PRs • Lack of communication • “I think I got a ‘don’t worry about it’. A vague , kind of, don’t worry about it. So, I’m not, I guess, um, .....I feel a little bit of a disconnect between what the coordinators know and what’s filtered down to me. So, I feel a little bit of, like, they’re withholding knowledge somehow, or there’s some pressures.....maybe either they’re getting.....that I’m not understanding, maybe. Or, if I knew, I could help. Or, if I knew....um...I feel a little bit on the outside. Like, that I’m part of the experiment, and that doesn’t sit that well with me. ‘Cause I want to be included in it....in the actual ....like, I feel like....part of me thinks that, if your having the, uh, meeting with the directors of the study, there should be at least be a representative of the peer researchers” PR

38. Triggering/Lack of Support • “Well, for me personally, um, it was a bit of an issue because I wasn’t ….I don’t know, I just… I… I wasn’t really prepared for that aspect of it -for whatever reason. I mean, I had a lot of other things going on in my head too at the time, but yeah, I wasn’t really prepared for it. It had more of an impact than I thought it would, but that could have been just as result of other things going on in my personal life simultaneously. I mean, for the most part people seemed okay. There was a couple people who got emotional and upset about certain issues and vocalized that, but …” PR

39. As framed by Researchers • Adherence to procedural ethics • Boundaries • “…part of the debriefing session was also to re, re-highlight the importance of confidentiality, we had done that before, but again, after learning all that…and we wanted to double emphasize the importance of confidentiality, but the, while we were talking to them we realized some of the complexities we had gotten into by having peers conduct interview and focus groups with their own peers…” Researcher

40. Organizational/Fiduciary • I have fired many peer workers, and it’s always awful, it’s one of the reasons I generally have a contract, I have a policy usually of work expectations, it doesn’t have to be very formal, but it has to really cover what it is, and what the consequences are, again, you know, with harm reduction, there are certain inherent challenges, and again, it can be around different ways of living, and functioning within a group, and so I find the policies are really important, and I always have a kind of light to heavy, kind of discipline model, so everything is always at first about supporting the person and letting them know what the expectations are, or what the next steps of the discipline or support will be…” Researcher

41. Support • From Researchers and Staff • Framed as training, skills, capacities- “if we only had more money”. • “…you talk about providing support, and part of that support is the training, and talking about what’s happening with the work, and what’s going on, and then each stage there’s a refresher, ok, now we’re at data collection, this is what we talked about, this is what we’re doing, and then we’ve moved it forward…” Researcher

42. Between PRs/To community members • Emotional support, community, helping. “We all brought our own unique talents and all of us, as far as advisory members were concerned, each have our own ability to, you know, part of the project was about how women support each other. And, all we did really is we supported others who needed it at that time. We supported each other. We supported participants. And, if at any point when it came-up that ...you know, we'd have bad days too, right, and we'd come into these meetings and the other people working on that project would also provide that same positive support to, say, get us out of that particular mood that we were just coming out of or some kind of event that just occurred and, you know, helping us leave that behind and focus on this project which for us was very fun, rewarding, fulfilling.” PR

43. Relational Models • Research is embedded in a set of relationships between researchers, participants, communities, funders, institutions, and governments. • examining these relationships illuminates ethical dilemmas in an nuanced and realistic ways (including the issues of power, control, and trust). • This paradigm emphasizes interactions, power, responsibility, and contextual and historical considerations in examining moral issues. • King, N. M. P., Henderson, G. E., & Stein, J. (Eds.). (1999). Beyond regulations : ethics in human subjects research Chapel Hill, NC: University of North Carolina Press.

44. “Our biggest challenge is supporting the women: finding them, bringing them to meetings, sitting with them afterwards – the invisible work that we don’t talk about” Researcher

45. Need to recognize (and embrace) the many competing issues at play in CBR projects. • Need to recognize (and embrace) that pre-existing and boundary crossing relationships may occur between PRs, other community members, and between PRs and other project members. • This reflexivity, which should be emphasized in training and mentoring, will provide both PRs, project staff, and researchers opportunities to reflect on how others are experiencing them within the research team, and the community. • Need to integrate reflexivity as an ethical imperative. • Etherington, K. (2007). Ethical Research in Reflexive Relationships. Qualitative Inquiry, 13(5), 599-616.

46. Discussion • …but how do we actually teach/integrate ethical reflexivity? • How do we create space for this?

47. References Flicker, S., Travers, R., Guta, A., Macdonald, S., & Meagher, A. (2007). Ethical Dilemmas in Community-Based Participatory Research: Recommendations for Institutional Review Boards. Journal of Urban Health, 84(4), 478-493. Flicker, S., & Guta, A. (2008). Ethical Approaches to Protecting Adolescent Participants in Sexual Health Research: Alternatives to Parental Consent. . Journal of Adolescent Health., 42(1), 3-10. Shore N. (2006) Re-Conceptualizing the Belmont Report: A Community-Based Participatory Research Perspective. Journal of Community Practice , 14(4):5-26. Roche, B (2008) New Directions in CBR, Wellesley Institute: http://wellesleyinstitute.com/ King, N. M. P., Henderson, G. E., & Stein, J. (Eds.). (1999). Beyond regulations : ethics in human subjects research Chapel Hill, NC: University of North Carolina Press. Etherington, K. (2007). Ethical Research in Reflexive Relationships. Qualitative Inquiry, 13(5), 599-616. Special Issue of Journal of Empirical Research on Human Research Ethics, vol 2.1 www.CBPRcurriculum.info

48. Thank You