Janice Duddy recently sat down with Heather Burgess and Sharyle Lyndon to talk about two research initiatives at the BC Centre for Excellence in HIV/AIDS related to HIV and Aging in BC: the Stronger Together initiative and the Thrive study. Heather is the Research Coordinator and Sharyle is a Collaborator in this work.
Can you please tell me about the Stronger Together and the Thrive studies?
Stronger Together is the first of the projects and is now complete. It resulted in three key pieces:
- We developed The BC Home and Community Care System and Older Adults Living with HIV report, an environmental scan of the home and community care landscape across the province for older adults, with a focus on older adults living with HIV.
- We surveyed 30 organizations across BC for A Provincial Overview of Community-Based Organizational Supports for Older Adults Living with HIV with information about whether community-based organizations were supplementing government home and community care services in BC; and
- We hosted the Community Roundtable (more below).
These three pieces provided the ground work for our next study on HIV and Aging called Thrive.
Thrive is a recently funded community-based research study that is going to examine access to health care and home and community care services for older adults (people 50+) who are living HIV (OALHIV) by:
- Looking at health care utilization among OALHIV to see if there are differences between those who do have home and community care and those who don’t;
- Conducting a qualitative study that will increase understanding of what facilitates and what challenges people’s access to home and community care, people’s experience of aging, and how this affects engagement with health care; and
- Conducting a service access mapping interview to help the team understand spatial patterns throughout the city of Vancouver about where people are going for services and what is accessible.
Can you please tell me about the Community Roundtable?
The goals and aims of the Roundtable were to share what we had learned from the two reports and we also wanted feedback from the community to see if we could add any sections or insights to the reports. It was important to tap into the community’s collective knowledge, to make sure the reports were aligned with priorities in the community. We also used time during the Roundtable to help develop the qualitative interview questions we are asking in Thrive. This was an opportunity for folks in the community to touch base and connect with each other around HIV and aging and for us learn about how we can best use this research to benefit the community.
What were the highlights from the Roundtable?
This was a great opportunity for a group of people from a range of backgrounds and sectors to get together and talk about HIV and aging and home and community care. We realized that everyone is on the same track and working with very similar priorities and there is potential for collaboration.
It is also important to create opportunities for older long-term survivors who are depending on each other for support and information to connect. This event was really positive in that way.
Learning about grassroots efforts and seeing how people are working on this issue across sectors was really beneficial – for instance community-based organizations and health authorities are working on this issue too. Everyone is working together to find solutions. It really was a 15-person conversation – every person connected with each other. It was great to see how well people shared space and let others speak.
What were the challenges that were identified by the Roundtable?
What was clear is that the reality of being an OALHIV and the real challenges OALHIV face are not being 100% acknowledged in the public eye. We live and work in our own bubbles. The fact that we are meeting and talking about these issues shows us that there is opportunity for improvement and we can work on this together.
We also need to have more government involvement to make real change. Better coordination of care is so important – care is so complex, people are falling through the cracks, care is delivered in silos, and no one is available to arrange coordinated services for OALHIV. Coordination of care is critically important.
Luckily, there is a real appetite to continue this conversation. We are trying to look at the positive side of this work.
What are the next steps?
We are moving into the Thrive Study, and it will be interesting to see what we learn from this work.
We have developed a summary of the discussion at the Roundtable for those who were not able to join. We’re taking the feedback from the second day of the Roundtable and using it to develop the qualitative interview guide for Thrive.
HIV and Aging has been identified as a priority for PAN and its members. What do you think are the priority pieces of work for community-based organizations in BC in this area?
We need to shift how we are thinking about older adults. Traditionally a senior has been defined as starting at 65 but among people living with HIV an older adult is someone who is 50+.
We also need to shift the focus for people who are older long-term survivors of HIV. For years, people have been told to prepare to die but now they are being told to not just live, but to go and conquer the world because there is nothing wrong with them – they are living with a “chronic and manageable disease.” There are many challenges to shifting the public’s perspective so they understand the realities of being a OALHIV or older long-term survivor. There are many people living with HIV who are afraid to act for many reasons including stigma, self-criticism, etc., it is time for us to change the narrative. It is important to pay attention to this.
If you’d like more information about the Thrive Study please visit the website.
Questions? Feedback? Get in touch! 
Janice Duddy, Director of Evaluation and Community-Based Research [email protected]