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AIDS Committee of Durham Region

What is the program?

The HIV positive youth peer engagement (HYPE) program seeks to aid in the transition of HIV-positive youth from the pediatric to adult HIV care systems and support them to remain in care, to prevent negative health outcomes faced by many HIV-positive youth. HYPE does this by building the capacity of HIV-positive youth to navigate the adult HIV care system (e.g., through education); reducing social isolation and building encouraging communities that support navigation; and facilitating communication and connection between the pediatric and adult care systems to better support transitions.

The HYPE program is operated by the AIDS Committee of Durham Region (ACDR). ACDR aims to create an inclusive environment for a collaborative approach to education, support and outreach for people with HIV, AIDS and related co-infections in Durham region. The HYPE program is funded by the Public Health Agency of Canada and operates across Ontario.

Why was the program developed? 

Transitioning from pediatric or adolescent HIV care to adult HIV care involves many challenges that can create barriers to care and result in unaddressed health issues for HIV-positive youth. This transition happens at a crucial developmental stage when individuals may have more complex mental and emotional needs (e.g., social isolation within their peer groups, fear of stigma when disclosing their HIV status to friends or partners, fears concerning their long-term health). Additionally, youth are often undergoing enormous change in their lives (e.g., becoming emancipated from their parents or guardians, becoming sexually active, entering higher education and the workforce) during this time.

Furthermore, the adult care system is more fragmented than the pediatric system and requires more independent systems navigation to connect to clinical, mental and social services. Many children and youth growing up with HIV are used to family-centred, child-friendly, multidisciplinary primary care teams that are supported by a variety of practitioners (e.g., nurses, social work case managers, psychologists, nutritionists). These types of programs provide wraparound care and nurture long-term bonds between care providers, patients and families that may no longer be present when youth transition to adult HIV care. This can lead to unaddressed health needs when youth lack the capacity to navigate the fragmented adult care system.

This program was developed to help address these barriers to care. All youth, including those who were perinatally infected and those who were infected as teenagers or young adults (e.g., through sexual activity, drug use or tattooing), can benefit from support and systems navigation because of the challenges associated with the transition to the adult care system.

How does the program work? 

The HYPE program is for HIV-positive youth who are transitioning from the pediatric/adolescent to adult HIV care systems.* The HYPE program uses the saying “connection=retention” and has three main areas of work:

  • building the capacity of HIV-positive youth through educational workshops to help them learn how to manage their own health and to navigate the adult health care system
  • reducing the social isolation of HIV-positive youth through networks of peers who provide social support, health systems navigation support and community-building opportunities
  • facilitating communication and cooperation between the adult and pediatric/adolescent care systems through ongoing provider (e.g., physician, nurse) education that better equips those providing adult HIV care to support the transition of HIV-positive youth to their care

An important component of the HYPE program is peer leaders who are HIV-positive youth. Peer leaders mentor other HIV-positive youth and help them navigate through the health system, provide educational workshops to program participants, coordinate meetups and community-building opportunities and provide social supports. The program currently has five peer leaders.

Youth are referred to the program by peers through word of mouth and through internal referral pathways at the ACDR. Youth can get connected into the program through staff (e.g., social workers and case workers) from other community-based AIDS service organizations (ASOs) across Ontario (e.g., AIDS Committee of Durham Region, ACT [AIDS Committee of Toronto], Black CAP [Black Coalition for AIDS Prevention], Regional HIV/AIDS Connection) who refer youth with whom they are working. HYPE has a social media presence and promotes the program online, so youth can also self-refer to the program.

Building capacity through educational workshops

HYPE offers opportunities for HIV-positive youth to engage in ongoing educational workshops to help them to build capacity to manage their own health and navigate the adult health care system. Workshops happen throughout the year (approximately eight to 10) and across Ontario. They can be in-person (e.g., linked to other events) or virtual. Educational workshops can be delivered by guest speakers (e.g., mental health professionals, clinicians) and peer leaders. Workshops can also include “open spaces” where youth discuss topics they choose, guided by peer leaders. Workshops can also take place alongside social events (e.g., “Friendsgiving” dinner). Workshops are discussion based, some are delivered in French and they cover a variety of topics, such as:

  • the importance of remaining in care and treatment
  • strategies for adhering to medication and attending care appointments
  • navigating the disclosure of one’s status to partners, friends and loved ones
  • transmission prevention aimed at keeping their HIV-negative partners healthy
  • self-care
  • anti-black racism and how to navigate the healthcare system as a Black youth with HIV
  • financial planning
  • ways to decrease isolation
  • how faith can be a tool to managing wellness

Reducing social isolation through social supports and navigation

HYPE provides social supports through the Pozzy Information & Interaction Group, which is a peer-led network of youth with HIV who provide social and emotional support to each other to decrease social isolation. “The Pozzy” maintains a presence across several social media platforms (e.g., Facebook, Instagram, Snapchat) to share resources and best practices among group members. Through these interactions, meetups are held and led by peer leaders. Meetups can be in-person or online. The peer leaders and program participants create and manage online tools to facilitate ongoing communication and sharing of resources and best practices with youth, including linking youth to services. ​

When youth need assistance with health system navigation or other more one-on-one support, a matching program matches a youth who is doing well in HIV care with a youth (i.e., a buddy) who is struggling or new to the transition between pediatric/adolescent and adult HIV care. Any youth who are doing well in care (e.g., making their appointments, doing well with their medication) can volunteer to be a buddy. The goal of the matching program is to link youth with a person in their community who can provide support and navigation. This could include attending clinic visits with them, taking medication at the same time (in-person or over video chat) or answering questions.

HYPE Summit

HYPE coordinates an annual three-day youth summit for approximately 60 HIV-positive youth from across Ontario. ACDR leads the coordination of the summit, with youth and community members (e.g., other ASO staff, clinicians) guiding the development of content for the event through their participation in a planning committee. ACDR takes the lead on logistics (e.g. hotel, transportation) and all planning committee members help to run the event.

The summit is facilitated by a mix of ACDR staff, staff from other ASOs and peer leaders. The summit includes workshops, special activities (e.g., mpox clinic), social activities and “open space” discussions that are youth led and driven.

The HYPE Summit is free for attendees and provides networking and social activities for youth that help to reduce isolation and build community. The connections made at the in-person HYPE Summit can be maintained or furthered through Pozzy meetups, online resource sharing and interactions, and/or the matching program.

The HYPE Summit engages with ASO staff in the communities where the summit is held to ensure that there are local support workers and counsellors as well as linkage to care for the youth who participate.

Facilitating communication and cooperation between the adult and pediatric HIV care systems

HYPE works in the community to educate the staff of adult HIV clinics about the needs of youth as they transition from pediatric/adolescent to adult care. This is done through educational workshops and trainings, webinars and one-on-one meetings with adult HIV clinic staff. Through these educational opportunities, the HYPE coordinator provides information on the unique issues facing HIV-positive youth to equip them to provide effective services to this population. The key goal of this strategy is to open communication about the challenges faced by youth as they transition from pediatric/adolescent care to adult care and to share best practices in providing care to this population across these systems, in addition to promoting anti-oppressive practices in the healthcare system.

In 2016, HIV-positive youth who were navigating the transition process between pediatric/adolescent and adult HIV care helped to create a Transition Accord. The aim of the Transition Accord was to help ensure a successful transition from pediatric care to adult care for youth living with HIV by informing adult clinics about the needs of youth as they transition. The HYPE program attempts to get adult care clinics to change practices by adopting and implementing the recommendations in the Transition Accord. ​

Required resources 

  • Youth peer leaders (currently five positions)
  • Program coordinator
  • Informal partnerships with social workers and case workers from ASOs across Ontario to support the HYPE program
  • Formal partnerships with pediatric clinical care providers (e.g., SickKids, Children’s Hospital of Eastern Ontario) to refer youth to the program
  • Space for in-person educational workshops
  • Space for in-person yearly HYPE summit
  • Partnerships with HIV clinics for information sharing with service providers


From April 2017 to March 2022, 12 workshops were delivered in Ontario. From data collected during focus groups, participant observation, feedback during one-on-one skill-building sessions (i.e., general support sessions between youth leaders and youth participants) and feedback from speakers (e.g., clinicians, activists), at least 60% of participants increased their uptake of positive health practices including medication adherence, attendance at doctor visits and improved relationships with their care team.

From April 2017 to March 2022, there were over 30 educational activities including webinars, one-on-one meetings and other trainings with 407 clinical service providers (e.g., physicians, nurses) and support staff (e.g., receptionists, administrative support) at both adult and pediatric clinics. During this time, HYPE staff met with 45 clinical service providers in one-on-one meetings during clinic visits.


  • Program participants have indicated that the in-person connections were the most impactful parts of the program, which caused challenges when services, including the HYPE Summit, had to go virtual during the COVID-19 pandemic. The length of the virtual summit was condensed to avoid losing participants to online video conference fatigue. This meant there were no service provider workshops, when in previous years the third day had service providers present. The service provider day at the HYPE Summit has yet to resume.
  • It can be a challenge to get clinicians who provide care to adults (e.g., doctor, nurses) to see the benefits of more holistic care for youth and this makes it challenging to get providers to actively refer to the program. Additionally, service providers may not recognize that some HIV-positive youth are long-term survivors with complex medical histories.
  • There are not a lot of HIV-positive youth in some regions, and this makes running programming (e.g., support groups exclusively for positive youth) challenging in areas with smaller populations.

Lessons learned 

  • Social media platforms are an essential tool for promoting the program, communicating with participants and engaging with youth.
  • The HYPE program can be adapted to virtual delivery, although youth stress the importance of in-person activities. Virtual approaches allowed for youth who were previously unable to connect to the program (e.g., because of location) to participate. The success of virtual platforms depends on whether people have access to the needed technology.
  • Online delivery of education for clinical service providers allows for new connections and partnerships, expanding the program’s reach to educate clinical service providers.
  • Creating spaces that are fun and engaging for youth is essential to the success of the program. Planning events for youth requires scheduling activities and this may require having extra money in the budget for planned activities during downtime.
  • Offering food at events helps to make them successful.
  • A guide to assist peer youth leaders in collecting evaluation data could lead to more consistent collection of data.

Program materials 

Transition Accord

Contact information 

Adrian Betts, Executive Director
Email: director@aidsdurham.com
AIDS Committee of Durham Region (ACDR)
115 Simcoe St S
Oshawa, ON
L1H 4G7

The HYPE program also offers a component focused on HIV prevention for at-risk youth. This case study focuses on the transition component of the HYPE program, which is for HIV-positive youth.