BC-CfE’s STOP HIV/AIDS Program Evaluation (SHAPE) Study members reflect ahead of World AIDS Day

posted on November 30, 2021

Ahead of World AIDS Day on December 1st, we asked several BC-CfE researchers about their work and how it relates to this year's World AIDS Day theme of ‘End Inequalities. End AIDS. End Pandemics’. Clara Tam, Tim Wesseling and Sean Grieve, BC-CfE's SHAPE Team.

Tell us about your role and the focus/study of your work?

Clara: I work as a Research Coordinator on the STOP HIV/AIDS Program Evaluation (SHAPE) study along with Tim and Sean. The SHAPE study aims to evaluate the impact of the STOP HIV/AIDS initiative of expanded testing and treatment across the province, as well as to better understand factors that influence access to and retention in HIV care. My work varies from day to day but mostly includes supporting data collection and managing data analysis and knowledge translation.

Tim: I work as a Peer Research Associate (PRA) on the STOP HIV/AIDS Program Evaluation (SHAPE) Study. My job has involved recruiting and interviewing eligible participants in this longitudinal study, which includes a baseline, and two follow-up surveys that launched in January of 2016 and concluded in September of 2021. I have also been actively involved in developing research questions based on themes that address inequalities in accessing care such as social supports and stigma.

Sean: I also work as a Peer Research Associate (PRA) on the SHAPE study and support recruitment and interviewing of participants throughout the three waves of the survey. I have also been involved in assisting research studies for many years before that.

What role does HIV play in your work and how does it impact your participants?

Tim: HIV is the common health issue in the lives of all the participants in this study, including my own! HIV continues to be part of my identity and therefore links me to all the study participants. We have a base connection which enables participants to share in a safe and understanding environment, thereby enriching the data collection.

Sean: HIV is the reason why I’m involved in research. As a peer researcher I also take on the role of an advocate to create change that can positively impact peers, and being involved in research is a way to influence change from within. If participants see me as a peer researcher, I hope it also encourages them to engage further in research beyond just being a participant.

(If your study involves HIV treatment/care) What are some concerns you hear from your study participants about accessing HIV care/treatment/testing?

Tim: There are a bunch of concerns that I have been aware of just from engaging in the in-person and phone interviews which account for more than 35 percent of the cohort. Most recently the COVID-19 pandemic has made it hard for many to get social supports and regular access to medical appointments. Regional and “rural vs urban” disparities are obvious when hearing about how people are accessing services outside of areas like Vancouver and Victoria. Stigma is also a big topic as HIV is still hidden in many geographical areas and social groupings. Lastly there’s funding and lack of political will which has seen a drop in focus and attention resulting in less “force of movement” and fewer community services.

Sean: Participants I’ve spoken to are worried about ageing, especially about heart, liver and kidney disease. More broadly they have expressed that they are afraid to die alone with recurring themes of stigma, loneliness and isolation particularly in areas outside Vancouver.

The theme of World AIDS Day this year is ‘End Inequalities. End AIDS. End Pandemics’. How do inequalities in HIV care influence your work and are there opportunities to address inequalities to HIV care in your work?

Tim: I feel that inequalities in HIV care are most notable on the community level. In my experience as a GBMSM, who has lived with HIV for 30 years, I have seen how a community can rise and be there for their own out of necessity. I see the need for other HIV community groups that are facing more stigma and less social supports to have similar peer and community driven action to be empowered and to address those inequalities. At my workplace and on my team we have been active in educating ourselves so that we can have a better understanding of those we serve, but still the direct involvement of those in the underserved communities of people living with HIV need to be included from A-Z in all aspects of HIV healthcare and research.

Clara: From a study perspective as Tim mentioned, we try to continuously educate ourselves on challenges our participants may face. Most recently, these challenges have been exacerbated through the COVID-19 pandemic as well as the poisoned drug supply. In response to these changes, and to ensure we accurately understand current participant experiences in our survey, we implemented a COVID-19 module to better capture how transitions to virtual health care services and impacts to the overall health care system affected their HIV care. In capturing these experiences alongside HIV care there is an opportunity to characterize and address inequalities that people living with HIV face today.

Can you share any examples of participants overcoming barriers to HIV care thanks to the work you do?

Sean: The biggest barrier to care for participants is not knowing details about their HIV care, especially when speaking with the doctor. Through administering the survey, we are able to informally encourage participants to be further engaged in their care and ask questions that may seem intimidating.

Tim: I think the best example of people overcoming barriers to HIV care is the part about connection building. Whether is me as a peer, the HIV specialist, the volunteer at the AIDS service organization (ASO), the graduate research student working on a study or the pharmacist where meds are picked up … we all need to be reminded that people living with HIV need to feel safe and welcome and respected.

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Epidemiology and Population Health

SHAPE Study

BC Centre for Excellence in HIV/AIDS

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BC-CfE’s STOP HIV/AIDS Program Evaluation (SHAPE) Study members reflect ahead of World AIDS Day

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