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HIV expert teams up with community activist to explore the care needs of young adults with the disease

July  29, 2015

When kids living with HIV leave childhood behind them, they also leave their pediatricians as they switch to adult healthcare – a process known as “transition.” This change often involves losing long-standing medical relationships and a vital network of supportive peers. Some teens feel alienated or isolated when entering into new care environments as adults. Many may stop taking their HIV medications and avoid seeking physical and emotional care.

“These young adults come into my practice with special circumstances and needs, and we need to find ways to tailor our programming and care to meet their requirements,” says Dr. Mona Loutfy, scientist at Women’s College Hospital. “Pediatricians have supported this group for nearly two decades and it would be a failure of the system if we let them fall through the cracks.”

In an effort to explore the unique experiences of post-transition youth, Dr. Loutfy teamed up with Ahmed Habre, community co-investigator and youth director at the Canadian AIDS Society, to host a three-day meeting with a diverse group of young adults and healthcare professionals from across Canada.

Thirty people attended the recent meeting, which was funded by a Canadian Institutes of Health Research Planning and Dissemination Grant from the Institute Community Support Program. The main purpose of the event, which was held last month, was to devise a community-informed research plan based directly on the ideas and opinions of youth. The broader goal of the meeting was to develop and refine health programming and support services that meet the specific needs of young adults with HIV.

“The meeting was unique in that we were able to gather more than a dozen youth from almost every corner of Canada,” says Habre. “What many of the young adults found amazing was that they weren’t just given a voice within the framework of researchers, but that they actually decided the priorities of what should be researched, how it should be researched, and what direction the implementation should take.”

The first half of the meeting included training and social activities, presentations by healthcare providers and young adults, and an open discussion among the group. Providers shared their perspectives on what programs and services are currently in place to meet the needs of HIV-affected young people. The youth who attended shared their personal experiences with transitioning through care and how the process could be improved. The rest of the meeting was dedicated to collaboratively developing a research plan and ideas to improve programming.

“I hope that this initiative will help create individualized, inclusive, supportive environments that will foster healthy transitions into adult care for all youth living with HIV,” says Dr. Loutfy.

Ahmed Habre and Dr. Mona Loutfy
Ahmed Habre and Dr. Mona Loutfy
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