Background:In 2015, PAN began the BC People Living with HIV Stigma Index (BC Stigma Index), a community-based research (CBR) study to document the experiences of stigma and discrimination from the perspective of people living with HIV (PLHIV). One of the objectives of this study was to “support PLHIV to be Stigma Index leaders & build capacity for PLHIV to participate in research planning and partnership development.” Six peer researchers were hired to implement the BC Stigma Index across BC, as well as to participate in data analysis and knowledge translation and exchange activities. Following the data collection phase, the peer researchers were interviewed about their experiences of leading and participating in the BC Stigma Index. This checklist outlines questions to consider when working with and supporting peer researchers and provides a summary of lessons that PAN learned from these interviews about supporting peer researchers. We hope it will serve as a useful resource for other CBR projects and teams.
What are some training needs to consider? |
LESSONS TO CONSIDER:
View training as an opportunity for broader capacity building: The primary purpose of training may be to prepare peer researchers for a specific project, but it is also a great opportunity to build capacity more generally. Many peer researchers seek a career in research; participatory research projects should anticipate this and intentionally support career advancement through comprehensive training. Anticipate and prepare for the unexpected: Research is an unpredictable process. Specific preparation for this was valued by peer researchers in the BC Stigma Index. Consider simulating the actual research process as much as possible during training by piloting the data collection tool and working through (or role-playing) some difficult scenarios that could arise during the research project. Our Experience: In interviews with peer researchers following the BC Stigma Index, every peer researcher that referenced the training provided found it useful and comprehensive. They specifically highlighted the chance to informally pilot the data collection tool during training and having the chance to work through scenarios together that could arise during the research process. Most of the peer researchers have continued to work in research after BC Stigma Index. Half mentioned specifically that the BC Stigma Index training was useful learning for their new research roles.
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What support resources need to be in place? |
LESSONS TO CONSIDER:
Provide adequate debriefing support: Although interviewing always has the potential to be an emotional experience, this can be especially true for people who share a common lived experience with those being interviewed – peers are often more connected to research study material than a non-peer researcher would be and working in a peer role involves a certain degree of automatic disclosure and vulnerability. Consider intentionally facilitating regular peer-to-peer debriefing support. It is also important to provide readily available, but independent, debriefing and/or counseling support. Think through logistics carefully: Organizational and logistical hurdles can be especially difficult for new researchers. Think through logistics carefully and prepare peer researchers to navigate them in a detailed way. It is also important to think about providing on-call support and a mechanism for ongoing feedback so that peer researchers are adequately supported when unexpected hurdles arise. Make sure to have adequate resources in place from the start: Given the focus on learning, discussion, and shared decision-making, participatory research projects require substantial time and resources. Research budgets need to adequately account for various resources, including human resource funds (staff time, honoraria) and communication and meeting expenses to support the project from start to finish. It is also important to budget funds for knowledge translation, dissemination, and action planning activities. Peer Researchers working remotely require extra support considerations: Having the freedom to work remotely was important for the BC Stigma Index goals and for peer researchers themselves, but it also presented additional support needs. If your project will be conducted remotely, consider setting up a robust system for on-call support at a distance. It is also important to anticipate the need for in-person back up support and have a contingency plan in place in case the need arises. Our Experience: Peer researchers in the BC Stigma Index found that regular debriefing support was essential. Most highlighted the importance of on-call peer-to-peer debriefing, facilitated through a phone tree. Half said that readily available but independent debriefing support should be in place as well. During the BC Stigma Index, logistical challenges arose that created difficulty for peer researchers. Specifically, the process for accessing honoraria payments was not sufficiently flexible to accommodate last minute interview scheduling; and interviewing out of multiple partner agencies created some scheduling difficulties, and often left peer researchers without in-person support.
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How can we maximize capacity building and support peer researchers’ future goals? |
LESSONS TO CONSIDER:
Facilitate peer-to- peer knowledge exchange: Peers have a wealth of knowledge to share, both with each other and with the research team as a whole. Facilitate this exchange intentionally, while also making room for it to happen organically. Provide adequate time for discussion and feedback during training, and as the study progresses. Provide intentional career support and mentoring: Peer research roles can act as significant career development opportunities. Participatory research teams should seek to maximize these opportunities by providing intentional career mentoring and support to peer researchers whenever possible. Our Experience: In interviews about the BC Stigma Index, peer researchers spoke highly of the knowledge, skills, and community connections they had gained through the research process. One peer researcher specifically praised the intentional career mentorship and encouragement provided by study management. A major theme of these interviews was the learning and capacity gained from other peer researchers. New researchers found the practical knowledge learned from more experienced peers to be invaluable in their own skill development. As well, many peer researchers highlighted the benefits gained from sharing community connections and contacts amongst a team with diverse identities and lived experience.
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How can we build on peer researchers’ strengths? |
LESSONS TO CONSIDER:
Be intentional about building on the strengths of peer researchers: Anticipate that peer researchers will bring valuable skills to a research project and be intentional and strategic about building on these skills from the start. Create adequate time and space for discussion and feedback during all stages of a research project, including an opportunity to debrief and give feedback at the study’s end. In the BC Stigma Index, peer support was an essential part of the study support infrastructure. Consider facilitating a regular forum for peer-to-peer knowledge exchange and support. Flatten research hierarchy, but don’t assume that it disappears: Collaborative decision making is an important value in participatory research projects and is a great way of tapping into the strengths of peer researchers. It is important however not to assume that unequal power dynamics disappear in more collaborative environments. Peer researchers may not be comfortable sharing everything with their immediate coworkers or supervisors — to maximize learning from peer researchers, consider implementing a more independent and/or anonymous mechanism for feedback as well. Our Experience: The central role of peer researchers enhanced many aspects of the BC Stigma Index, including: recruitment, interviewing, capacity building, peer support, and knowledge translation and exchange. For example, peer researchers’ existing community connections and identities as peers helped fuel recruitment and establish trust with study participants. As well, most peer researchers emphasized that regular connection with fellow peer researchers for knowledge exchange and support was essential to their own, and overall study success.
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Download a copy of the Checklist
Written by Joanna Tulloch, MPH Practicum Student
Questions? Feedback? Get in touch!
Joanna Mendell, Director of Research and Evaluation
[email protected]