Submitted by the SHAWNA Project.
The SHAWNA Project started in 2014 and is ongoing until 2025. SHAWNA includes quantitative (surveys) and qualitative (narrative interviews, focus groups, arts-based methods) approaches. The main objective of the SHAWNA Project is to understand the factors that shape access to HIV care and sexual and reproductive health among women living with HIV. The SHAWNA Project includes women living with HIV who live in and/or access HIV care in Metro Vancouver. The SHAWNA Project is particularly interested in making recommendations that can help guide trauma- and violence-informed approaches in HIV care and practice. Read Part 1 of this feature on SHAWNA’s work.
As part of our commitment to reciprocity in research, several of the main ways that we try to connect what we do with community experts include: (1) collecting information on community expert preferences on receiving information about the study; (2) producing a newsletter two times per year; (3) summarizing research findings into infographics and plain language summaries; and (4) utilizing arts-based research methods. We draw on the Centre for Gender and Sexual Health Equity (CGSHE) Knowledge Translation/Communications (KT/Comms) team to help support dissemination of our knowledge translation pieces to broader audiences.
Community expert preferences on receiving information about the study
At each follow-up survey, we ask focused questions to help guide our understanding of how community experts wish to receive information about our study. We discuss these results at each monthly staff meeting. Table 1 shows the results from our most recent follow-up survey (September, 2023-February, 2024). While not all of the community experts respond to these questions, we find that this process provides valuable information to help guide our decisions. We also check in regularly with community experts at our Positive Women’s Advisory Board meetings, Community Advisory Board meetings and with staff at staff meetings for ideas on how to get study information and results out to the community.
Regular newsletter
Since Winter, 2021 we have produced a SHAWNA Newsletter every six months, twice per year, once in winter and once in summer. The newsletter’s intended audience includes community experts, community and clinical collaborators. Staff, trainees and the SHAWNA Principal Investigator work collaboratively to fill in the different sections of the newsletter, which is reviewed extensively by SHAWNA Project staff, including by members of our Positive Women’s Advisory Board and by drop-in attendees where interested and available.
The newsletter includes updates on the operations of our Community Research Hub, events including our monthly drop-in, staff highlights, recent research findings, other studies that community experts can be part of and knowledge translation and exchange. The newsletter is emailed to community experts who indicate they would like to receive it, along with community and clinical partners and collaborators. Our CGSHE KT/Comms team make the newsletter available on all social media platforms, ensuring that we have a wide reach.
Infographics and plain language summaries
We aim to produce plain language summaries with visuals of most of our scientific manuscripts. The infographics’ intended audience includes community experts, community and clinical collaborators. The common structure and headings of the infographics were developed collaboratively with SHAWNA Project staff. The main author of the study completes the first step of drafting the text of the infographic. The text is edited by the CGSHE KT/Comms team to ensure accessible language. The CGSHE KT/Comms team creates a first draft of the visual. Then, the PI shares this version with SHAWNA Project staff, where the wording and style are reviewed extensively, including by members of our Positive Women’s Advisory Board and by drop-in attendees.
This process can be lengthy and space is given to ensure that all are happy with the final product. The final version of the infographic is a product of many back-and-forth edits and discussions. By the end of the project, we will compile these infographics into a visual report. As with the newsletter, our CGSHE KT/Comms team makes the infographics available on all social media platforms.
Arts-based methods
Recognizing that arts-based research methods can provide a more accessible way to engage in research processes, and also can be a valuable form of knowledge translation and exchange in itself, SHAWNA researchers, project staff and trainees have worked on several arts-based projects and products. One SHAWNA Project trainee produced an animation to describe research findings on the experiences and impact of incarceration among women living with HIV (Watch on YuuTube). Among participants in the SHAWNA (Sexual Health & HIV/AIDS: Longitudinal Women’s Needs Assessment) Project, this work highlights that 75% of women in SHAWNA have been incarcerated at some point in their lives. The video highlights challenges and harms perpetuated through involvement in the criminal justice system and speaks to the need for enhanced services and supports for women during and post-release from incarceration.
Drawing on community-based participatory research principles, the animation was created in collaboration with an advisory group of SHAWNA community experts who had lived experiences with incarceration. Over the course of a year, the group met numerous times to give feedback and input on each stage of the process. Three women from the group narrated the video. This project was made possible through funding from the Public Scholars Initiative at the University of British Columbia. This video was animated by Drawing It Out. You can find them at www.drawingitout.com.
Further, SHAWNA Project staff started a participatory digital storytelling project aligned with the overall SHAWNA Project research goals. The digital storytelling project was named “My Story My Way” by participating community experts. My Story My Way includes eight stories focused around understanding what trauma- and violence-informed HIV treatment and care means to women living with HIV. The methodology of My Story My Way was developed over several meetings with interested community experts. Four four-hour workshops were planned to ensure that community experts participating would gain the knowledge and expertise needed to create their stories with project staff. Our workshops are filled with powerful stories of strength and support in the community. Stories were collected between September-December, 2023 and reflective interviews conducted between January-April, 2024. A group-based collaborative introduction and conclusion will be developed between May-June, 2024 and screening in the summer of 2024. We anticipate that this project will be complete by end 2024.
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This post was prepared by the SHAWNA team for PAN’s Research and Evaluation Treehouse