Tim Wesseling and Sean Grieve are approachable, engaging and affable; more importantly, they are passionate and dedicated to making a difference in their communities. Both are peer research associates (PRAs) on the BC-CfE’s STOP HIV/AIDS¨ Program Evaluation (SHAPE) study, which aims to uncover what factors influence individuals’ access to HIV health care and how people can best be supported to stay engaged in care.
Wesseling and Grieve each faced their own challenges after their HIV diagnoses. Now, these experiences allow them to contribute to research as they reflect on their respective journeys that led them to become PRAs. Their process for forming research questions is founded in lived experiences. “It’s not just a research question, it’s about us as well. We know what gave us success in our lives,” said Wesseling.
Grieve said that after his HIV diagnosis he had essentially stopped thinking about what he could do or be. He is now putting his years of experience to use, while building his resumé and picking up skills he might not have otherwise-from better understanding PowerPoint and Excel to bringing research findings back to the community. “There is a pride. We are not only supporting others, we are supporting ourselves,” added Grieve.
For Wesseling, being a PRA enables him to share with others the support and encouragement that he once received, which was instrumental in overcoming substance use and coming to terms with his HIV diagnosis. Until about five or six years ago, he had not engaged with peers or accessed social support through community organizations. “Meeting with peers and people who had gone through similar experiences was a way for me to connect. It was through the connection with peers that I was able to resolve issues in my life, ask for help, get treatment, move forward and go from where I was to where I am now,” said Wesseling.
Wesseling and Grieve are strong advocates for the power of human connection, and they apply this in all aspects of their work. They have often made the journey to meet individuals in person, to recruit SHAPE study participants and conduct interviews. They have observed stigma and heard about the fear of discrimination in communities they visited, particularly outside of urban centres. “The SHAPE study is doing a great job in looking at where people fall in and out of the cascade of care. And is it because of stigma, is it because of connectedness?” said Grieve.
The intuitiveness provided through lived experience is not something that can necessarily be picked up in a course or a textbook.
SHAPE PRAs play an important role in achieving the SHAPE study’s goals. They help with devising research questions, engaging participants and community partners, conducting interviews, presenting research and communicating research findings back to participants.
PRAs help to provide a more representative perspective on the challenges individuals living with HIV may face when trying to access care. According to Wesseling, the intuitiveness provided through lived experience is not something that can necessarily be picked up in a course or a textbook.
The SHAPE study is looking to understand what affects individuals’ transitions through the HIV cascade of care. By strengthening knowledge of the socio-structural factors that influence linkage and retention in HIV care, the SHAPE research team seeks to identity where specialized supports are needed. In doing so, the research will contribute to addressing health inequities among marginalized populations. Importantly, the SHAPE study is assessing the impact of exposure to the province-wide Seek and Treat for Optimal Prevention of HIV/AIDS, or STOP HIV/AIDS¨ among people living with HIV in BC. STOP HIV/AIDS aims to better engage people living with HIV/AIDS and at-risk populations in HIV testing, treatment and care. Outreach teams throughout the province are dedicated to engaging clients-sometimes even knocking on doors. They take steps to help individuals overcome barriers to accessing HIV care, such as homelessness, unemployment, mental health or substance use issues.
Stay tuned: SHAPE study findings will be presented at upcoming conferences and events. For up-to-date information, please visit the study’s webpage.