Rajesh Pisharody, Executive Director at The Teresa Group, discusses some of the unique challenges facing Canadian children and youth living with HIV, and the supports that are available to them to access at The Teresa Group…
HIV can affect anyone, no matter their age, sex, gender, sexual orientation, race or ethnic origin. However, certain populations carry a disproportionate burden of HIV, and children, adolescents and young adults represent a growing share of people living with HIV (PLHIV) worldwide. Studies also show that a significant number of youth, particularly those who identify as members of the LGBTQ+ communities, engage in high-risk health behaviours and experiences, including reduced condom use and increased substance use, both of which can increase rates of exposure to HIV.
The statistics are echoed in Canada. According to CATIE (the Canadian AIDS Treatment Information Exchange), 25 per cent of all HIV diagnoses across the country in 2021 were among youth between the ages of 15 and 20.
Among the barriers faced by all PLHIV, our children and youth face unique challenges; something that The Teresa Group is all too familiar with. Based in Toronto, The Teresa Group is Canada’s oldest community-based charitable organization focused on working with children and youth affected by HIV/AIDS and their families. Established in 1990, it has evolved from providing support to a handful of children and families, to an organization with a dedicated team of professional staff providing a broad range of frontline services to hundreds of local children, youth and their families. It was originally founded on providing support to those up to 18 years of age, but has now expanded to include those 25 years of age.
One of The Teresa Group’s biggest annual initiatives is Camp Mandala, a one-week summer camp experience for children and youth between the ages of nine and 17 from Ontario. The program allows children and youth living with and affected by HIV to connect with their peers, build support, and empower themselves to live self-sufficient and independent lives. The camp prioritizes anonymity as it relates to the HIV status of campers, understanding that disclosure is a difficult topic for all PLHIV, particularly amongst children and youth.
“Giving back to the community means the world to me and going to Camp Mandala with the children and youth campers was an absolute delight,” says one Camp Mandala counsellor, who asked to remain anonymous. “Seeing the children and youth have so much fun and them getting to connect with each other from the first day till the last was really amazing, knowing that some of them have made friendships that will possibly last a lifetime. Being part of that is what makes me want to continue being a Camp Counsellor at Camp Mandala in the future as well.”
We spoke with The Teresa Group’s Executive Director, Rajesh Pisharody, who has dedicated his career to child rights, social justice, global health care and the empowerment of marginalized communities, to find out more about this community-based organization and the supports they offer children and youth living with HIV.
When it comes to living with HIV, what are some of the unique challenges that youth face compared to adults?
There are very few AIDS Service Organizations that support children and youth living with HIV specifically. We are focused on the practical support required for children and youth transitioning into adulthood. These practicalities can include a range of activities such as applying for housing subsidies, accessing income and food security, medical coverage and linkage to treatment and care. to locating food stamps to navigating other medical concerns. Our goal today is to minimize the viral load in the body, preventing transmission of HIV from mother-to-child, but our youth are struggling with navigating the system to maximize the resources available to them to help reach that goal.
Can you tell us a bit about some of the programs The Teresa Group offers?
We offer a number of programs, including support groups for expectant mothers, for new moms and toddlers. We’ve also have a support group for dads, recognizing that it is important to support this demographic as well. In addition, we have a parents’ club. This is where parents can convene and have the space to be safe and discuss their experiences around pregnancy and parenting. We have a team of family support coordinators who fulfill case management and counselling in terms of access to supports, linkage to treatment and care, food and income security and housing stability. Additional programs include back-to-school support, an infant formula program for pregnant women and new mothers, education scholarships and holiday programs.
Could you talk about Camp Mandala: what are some of the objectives for the program?
Camp Mandala is another important summer program we’ve created. It’s an overnight camp for children and youth infected and affected with HIV, managed by a team of 18 Camp Counsellors in our Leadership Development Program, many of whom are youth and children who went through The Teresa Group themselves. The camp offers children and youth aged nine to 17 a chance to develop their life skills, leadership qualities and self-esteem. It is an opportunity to bond with new friends, share life experiences and create lifelong memories. The camp is made possible by donation, in particular from ViiV Healthcare Canada, who is a major sponsor.
What’s the benefit of having youth-focused HIV programs and services?
It is very critical today. There are very few conversations that shed light on the impact of HIV on children and youth. Youth can feel very isolated, not feeling comfortable discussing certain topics with their parents – we are the safe space for them to communicate their feelings and access supports they require.
If you could leave the reader with a few thoughts on why it is important to support youth living with HIV to reduce stigma, what would you say?
Firstly, it is important to recognize that HIV is still real and still an issue that needs a lot of attention, even in Canada. Many issues arising from the stigma around HIV includes access to treatment, access to specialized care, youth-focused programs, helping youth living with HIV build their life skills and more. We must help them have access to these opportunities. Additionally, there needs to be more advocacy for youth impacted by HIV focusing on their sexual and reproductive health and rights.
To learn more about The Teresa Group and to access resources, visit teresagroup.ca/index.php/resources/.
This article is sponsored by ViiV Healthcare Canada