When kids living with HIV leave childhood behind them, they also leave their paediatricians as they switch to adult health care—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, and 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 as Women’s College Research Institute, and physician and research director at the Maple Leaf Medical Clinic. “Paediatricians 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 Mr. 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 health care professionals from across Canada.
The meeting was held in the summer with funding from the Canadian Institutes for Health Research and 30 people attended. The main purpose of the event was to devise a community-informed research plan based directly on the ideas and opinions of the youth, with a broader goal of developing and refining 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 health care 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, and the youth 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 foster healthy transitions into adult care for all youth living with HIV,” says Dr. Loutfy.
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Mr. Ahmed Habre and Dr. Mona Loutfy
The Globe and Mail
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