The document discusses several topics related to peer research, including:
- The benefits of having lived experience when conducting research with communities.
- Challenges that can emerge around roles, responsibilities, and power dynamics between peer researchers and academic researchers.
- The importance of training, support, and clear communication throughout the peer research process.
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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
13. Nine Key Principles of CBR
CBPR recognizes community as a unit of identity.
CBPR builds on strengths and resources within the community.
CBPR facilitates collaborative, equitable partnerships in all phases of the research, involving an empowering and
power-sharing process that attends to social inequalities.
CBPR promotes co-learning and capacity building among partners.
CBPR integrates and achieves a balance between research and action for the mutual benefit of all partners.
CBPR emphasizes local relevance of public health problems and ecological perspectives that recognize and attend to
the multiple determinants of health and disease.
CBPR involves systems development through a cyclical and iterative process.
CBPR disseminates findings and knowledge gained to all partners and involves all partners in the dissemination
process.
CBPR involves a long-term process and commitment. (Israel et al 2003)
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
17.
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
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
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 coverthis….” 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
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
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
Sample Questions (% yes) BC Western Ontario Quebec Eastern
Does the form ask explicitly about community
involvement in identifying the rationale for the research?
10% 0% 4% 0% 0%
Does the form ask how the community was involved in
determining and identifying priority research questions?
10% 7% 4% 0% 7%
Does the form ask how the community will be involved in
various stages of the project as it moves forward?
10% 0% 0% 0% 7%
Do forms ask about risks to communities?
30% 21% 18% 18% 21%
Do forms ask about community consent (e.g. through
community leaders--elders, religious leaders, etc)?
50% 36% 18% 14% 29%
Do forms ask how partners or advisory boards will
define accountability or decision making structures?
0% 0% 0% 0% 0%
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
