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Beyond the guidelines… What does it mean to be an ethical researcher?

Beyond the guidelines… What does it mean to be an ethical researcher?. Sarah Flicker Assistant Professor, York University OHTN Scholar. Reflexivity in CBR. Peer Research Study. Areas of Interest and Tensions:. Hiring/Firing.

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Beyond the guidelines… What does it mean to be an ethical researcher?

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  1. Beyond the guidelines…What does it mean to be an ethical researcher? Sarah Flicker Assistant Professor, York University OHTN Scholar

  2. Reflexivity in CBR

  3. Peer Research Study

  4. Areas of Interest and Tensions:

  5. Hiring/Firing I have fired many peer workers, and it’s always awful… 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…”

  6. 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

  7. Lack of Communication • “I think I got a ‘don’t worry about it...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. 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....” PR

  8. “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

  9. “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

  10. Triggering • “Well, for me personally… I wasn’t really prepared for that aspect of it -for whatever reason…. It had more of an impact than I thought it would…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

  11. Support (Professional Researchers) “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

  12. Support (Peer Researchers) “Part of the project was about how women support each other… 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 …PR

  13. Responsibility 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

  14. Dissemination “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

  15. 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

  16. When paradigms collide

  17. Relational Models

  18. “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

  19. Suggestions

  20. Toronto Teen Survey from 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. & Flicker S, Guta, A., Larkin, J., Flynn, S., Fridkin, A., Pole, J., Travers, R., Layne, C. (in-press) Survey Design from the Ground-Up: The Toronto Teen Survey CBPR Approach. Health Promotion Practice.

  21. Toronto Teen Survey (TTS)

  22. Involvement of Youth • Youth Advisory Committee (YAC) was formed. • A diverse group of 12 youth (aged 13 – 17) met seven times over four months to develop survey tool. • Trained in survey design.

  23. Multiple Stakeholders

  24. youth-friendly consent procedures

  25. Team Composition

  26. Partnering with experienced community based youth-serving agencies • Risk to participants can be minimized by conducting survey sessions through community networks of youth-serving agencies.

  27. Paying maximum attention to issues of confidentiality and anonymity

  28. Valuing participation appropriately

  29. Ongoing Communication

  30. Dissemination Partners

  31. Thank You!Funders: CIHR, OHTN, Wellesley, CUHIPartners: Adrian Guta & Brenda Roche (peer research)Robb Travers, June Larkin, Jason Pole, Susan Flynn et al. (TTS)All the youth and peer researchers who participated in our researchContact: Flicker@yorku.ca

  32. 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

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