On World AIDS Day, December 1st, we asked Dr. Surita Parashar, a BC-CfE research scientist of the Epidemiology and Population Health Program about her work and how it relates to this year’s World AIDS Day theme of ‘End Inequalities. End AIDS. End Pandemics’.
Q.
Tell us about your role and the focus/study of your work?
A.
I am the Principle Investigator of Thrive, a research study that investigates the home and community care needs of older adults living with HIV within Vancouver Coastal Health. I am privileged to work alongside an amazing team of Peer Research Associates who co-lead this work. Antonio, Claudette, Patience, and Sharyle are older adults living with HIV who have experiences in common with the study population. They are truly the driving force of this study.
Q.
What role does HIV play in your work and how does it impact your participants?
A.
All of our study participants are living with HIV, so HIV is a common thread in participants’ life stories. Our peer research associates speak to folks about aging with HIV and the journey to accessing the care need as they experience ebbs and flows in their health status. However, HIV itself is not the focal point of our discussions with participants and I would even go so far as to say, it’s not the most pressing issue folks have to manage day-to-day. It’s other social-structural issues – securing adequate housing, facing stigma and discrimination in healthcare settings, navigating the opioid crisis – that have the most significant impact on people’s health and well being.
Q.
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?
A.
Advances in access to HIV care – including the universal availability of treatment and the widespread use of life-saving antiretroviral therapy – has resulted in incredible gains in life expectancy amongst people living with HIV in BC. Technically speaking, all people living with HIV have equal opportunity to access and benefit from treatment, so the main issue is not inequalities in HIV care. What persists and undermines these gains are health inequities – systematic differences in the opportunities people living with HIV have to achieve optimal health, which leads to unjust and avoidable differences in health outcomes between different people and sub groups of PLHIV. Thus, despite incredible advances in HIV treatment and prevention, people living with HIV who are marginalized by social-structural inequities disproportionately experience poor health outcomes. We see that amongst members of our communities who use substances, for example.
In regards to learnings from the Thrive study specifically, home and community care is a service available to anyone who is experiencing acute, chronic, or rehabilitative health-care needs. However, many of our study participants who are in need of this service face barriers to accessing it – lack of information, lack of support, stigma, competing needs relating to mental health and substance use disorders. So once again, the main challenge with access to this kind of care is not inequality, it’s inequity.
We have heard many disheartening stories of the stigma, discrimination, and biases of providers that prevent people marginalized by social structural inequity from accessing the care they need. We have also heard incredible stories of resiliency, people taking care of one another, and providers going the extra mile to support their clients in getting the care they need.
We hope through communicating our findings to those who design and operate the home and community care system, we will be able to convey the barriers many people face in accessing this care, as well as the factors that have helped people along in their journey to accessing care – peer support; and patient-centred, culturally safe, tailored supports for people with urgent health needs who experience social-structural inequities.
Q.
Can you share any examples of participants overcoming barriers to HIV care thanks to the work you do?
A.
For sure the most significant impact of our work is felt through peer-to-peer connection, thanks to the incredible team of peer research associates being the main point of contact with study participants. Peer research associates know what services are out there; they know the roadblocks and pathways of the care journey from first hand experience, as well as through the other hats they wear as advocates, volunteers, peer navigators, and leaders in their communities. Sometimes connections are made to services that a participant otherwise would not have known about, which could contribute to people overcoming barriers to care. A lot of the time interviewees mention that it felt good to have someone intently listen and care about their story. It’s good to know that at the very least, connecting with peer research associates in the interview process is a positive experience for Thrive participants.