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.
It is not always easy to participate in a research study like the SHAWNA Project. Participants, or community experts with lived experience (‘community experts’), are asked to come in and respond to long surveys and participate in clinical visits with a Sexual Health Research Nurse every six months. Research can feel and can be extractive to community experts. Some participants have had negative experiences with research studies. Many community experts in SHAWNA live with multiple barriers to participating in research studies, including poverty, houselessness, trauma and violence, and criminalization.
Drawing on community-based research principles, the SHAWNA Project investigators and staff aim to build trust and support community experts in a variety of ways. All SHAWNA Project staff come with extensive lived and community experience and expertise that is relevant to the project. The SHAWNA Project is not a community-based organization and cannot replace the important role that any community-based organization provides, including funding, resources and staff time. As part of our commitment to reciprocity in research, several of the main ways that we try to support participants are outlined here: (1) access to our Community Research Hub; (2) referrals, support and outreach; (3) SHAWNA Monthly Drop-In; and (4) Positive Women’s Advisory Board. Within all of our work, SHAWNA staff and investigators are committed to ‘responsiveness’ – by this we mean that collectively, we do our absolute best to be self-reflective, humble and responsive to the needs of community experts, which might change over time. The long-term nature of our study means that we can make changes more easily over time as we build trust and connections.
Community Research Hub:
The SHAWNA Project conducts research activities at the Centre for Gender and Sexual Health Equity (CGSHE) Community Research Hub. This site is located within the Downtown Eastside neighbourhood and acts as a safe space for community experts to interact with research team members. In this space, community experts can also access resources, snacks and a warm cup of coffee.
Fig. 1: Community Research Hub space, front desk. Fig 2: Community Research Hub space, waiting area
Monthly drop-in and outreach
From conversations and interviews with community experts, SHAWNA staff noticed how limited drop-in spaces were for women and gender-diverse people living with HIV in Metro Vancouver, especially because of the closure of several key community-based organizations over the last 6-7 years. To be responsive to these needs for increased connections with other women and gender-diverse people living with HIV, SHAWNA staff took the initiative to start up and organize a monthly drop-in for the first Thursday of the month.
This drop-in started in January, 2022 and is ongoing. In these drop-in events, community experts primarily access food, crafts, games, pampering, social support, research findings as well as facilitated connections to the sexual health research nurse if desired. We have also organized special drop-ins as part of the annual Love Positive Women event, including making Valentine’s Day cards and buttons with positive messages of love and reducing stigma about living with HIV. In addition, we have dedicated critical staff time to provide regular check-ins, phone and in-person outreach throughout the week, including clinical visits with a sexual health research nurse.
Figs 3 and 4: Love Positive Women 2022 images. Fig 5: drop-in group flyer.
Referrals and support
Many studies provide a resource list or other information to community experts through a passive referral of resources process, which is important and helpful, and SHAWNA does this too. In addition, the SHAWNA Project staff have extensive lived experience and training to provide active referrals and support to community experts and are provided with ample working time to provide support. In active referrals, as compared to passive referrals, staff provide additional support beyond resource lists/information (e.g., call a housing or food agency with the community expert, follow-up with the participant).
As much as is possible, staff collects detailed information about active referrals to make it easier to communicate between team members and ensure that our information is current and updated. Over 2.5 years (five follow-up surveys) between September, 2021 to March, 2024, we recorded 331 referrals and instances of support with community experts. Collecting information like this helps us better understand how we can support community experts. Figure 6 describes the different types of referrals that we made during this time. Food inaccessibility is one of the primary barriers participants face in our study as about 46% (151) of the referrals made were to address food insecurity. SHAWNA staff noticed that many community experts had high needs for healthy and easy-to-prepare foods. To be responsive to these needs, and while we still have many different types of snacks in the office, SHAWNA staff took the initiative to organize the purchase of additional food from a grocery store to have on hand (the SHAWNA ‘pantry’).
While we know we are not able to replace critical services that CBOs provide to address food insecurity, community experts have expressed a lot of appreciation for being able to take home a small bag of groceries during their six-monthly study visits. We also made a number of referrals to social and peer support (17%, n=56), health/medical services including HIV care (12%, n=39), mental health/counselling (12%, n=38), housing/shelter (5%, n=17), harm reduction (5%, n-16), Indigenous-specific health and cultural wellness (2%, n=8) and other advocacy (2%, n=6). The majority of these numbers are underestimates, as it can be challenging to record active referrals and resources that we provide amidst the other tasks that staff are needed for during the day.
Fig 6: Numbers of referrals by the type of referral. Total number of referrals was 331.
Positive Women’s Advisory Board
Since the SHAWNA Project began in 2014, we have had a Positive Women’s Advisory Board (PWAB), which includes 10-15 women who are community experts with SHAWNA and meets 3-4 times per year. At these meetings, food and stipends are provided. In our meetings, we discuss research priorities and findings and share other information. These meetings are also an opportunity to connect with other community experts, provide and receive support and access resources at the Community Research Hub. Figure 7 shows some photos of an exercise that PWAB members participated in to better understand what are the important characteristics of trauma- and violence-informed HIV care and practice. This activity directed contributed to the development of new questions on our surveys and research findings.
Fig. 7: Photos of an exercise that PWAB members participated in to group important characteristics of trauma-informed HIV care and practice.
Read Reciprocity In Research, Part 2 – Knowledge sharing and exchange
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This post was prepared by the SHAWNA team for PAN’s Research and Evaluation Treehouse
