Resource Library

Get the Facts: Collection of Project Case Studies
Hepatitis C Prevention, Support and Research Program

Case Study: YouthCO AIDS Society
Vancouver, British Columbia

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YouthCO's Neighbourhood 

The Youth Community Outreach AIDS Society, known as YouthCO, is located on West Pender Street in Vancouver's Downtown Eastside in a walk-up building that also houses a dance studio, a music studio and a small store. As you enter YouthCO's office and drop-in centre on the second floor, you get a sense of openness and space. It is a youth-friendly environment with music and incense in the air. If you are lucky, Jake, the Executive Director's little dog, will welcome you - he seems to know everyone. The area is divided into an office with computers (including one for clients' use), a kitchen with coffee pot and pop machine, a lounge with comfortable couches and a pool table, and a library - which can be closed off for private conversations. Clients drop in and out during the day and on the evenings when an event, such as a dinner or a support group, is taking place. 

This comfortable oasis contrasts with the grim reality of the neighbouring area outside, described as among the poorest in Canada: 

Overdose deaths and other health complications of drug use have been observed in this neighborhood since the 1970s. Despite the presence of a needle exchange program that provided access to sterile syringes through several means of exchange, an explosive HIV epidemic, that remains among the highest ever observed in the developed world, was documented among the neighborhood's injection drug users in 1997. Specific local factors, such as the prevalence of cocaine injection, which may involve as many as 30 injections per day, and the lack of additional prevention measures such as safe injecting sites and accessible drug treatment programs, have been suggested as contributing to the epidemic.¹ 

The Context of Hepatitis C 

Reporting of hepatitis C started in 1992 across British Columbia by its 18 (now reduced to 6) Health Authorities. The Province has rates of newly reported cases of hepatitis C infection that are twice the national average, with the highest rates occurring in Vancouver and the adjacent Fraser Valley. The rate of newly reported cases of hepatitis C was 124.7 per 100,000 in 1999, as compared with a national rate of 63.6 per 100,000.² It has been estimated that there are 40,000 cases of chronic hepatitis C in BC.³ In 1999, two-thirds of newly reported cases were in males, a reflection of the higher number of males engaging in injection drug use which is associated with approximately 60% of newly reported hepatitis C infections in BC. The highest rate of newly reported cases of hepatitis C infection was among males aged 40-59, with a rate of 271.1 per 100,000, more than four times the overall national rate. The greatest number of infections among women was reported in the 30-39 age group. Males of all ages had higher infection rates than females.⁴ 

The Province of British Columbia negotiated a compensation package for those individuals infected through the blood system before 1986 and after 1990, who would otherwise not be compensated through the national settlement. In 1999, the Vancouver Richmond Health Board developed a proposal for a provincial hepatitis strategy in response to high hepatitis rates in the area. The BC Centre of Disease Control (BCCDC) received funding from the Provincial Government to establish the BC Hepatitis Services. This division of BCCDC provides an integrated response to prevention and care management of hepatitis. Programs developed by BC Hepatitis Services are based on prevention and care management, education, community participation, information management, lab services, and research.⁵ The Provincial Hepatitis Advisory Committee was established as part of this initiative. 

Vancouver is the largest city in British Columbia and the third largest city in Canada with a population of 545,000 in 2001 and a surrounding metropolitan area of nearly two million people. Vancouver is one of Canada's most ethnically diverse cities with immigrants from Asia accounting for a substantial proportion of its population. There is also a significant Aboriginal population in Vancouver.⁶ In 1997, it was estimated that the Vancouver Health Region served just over 556,000 people.⁷ The Vancouver region has the highest number (1,374) and rate (186.1 per 100,000 population) of newly reported cases of hepatitis C infection in BC.⁸ Further, it is believed that hepatitis C has spread rapidly: 

More than 90% of persons who inject drugs in Vancouver are believed to be infected. Since the early 1990s the Vancouver region has also experienced alarming rates of illicit drug-related overdose fatalities, averaging more than 300 per year since 1996.⁹ 

The Development of YouthCO 

In April 1993, a meeting of over 30 BC community organizations was held to discuss issues related to youth and HIV/AIDS. The need for youth-specific services was clearly identified and in February 1994, the Youth Community Outreach AIDS Society was formed to provide education, support and advocacy for youth between the ages of 15 and 29 on issues associated with HIV/AIDS. Later that year, in July, it was incorporated as a non-profit society and eventually became a registered charity.¹⁰ 

Known as YouthCO, it is a non-profit agency run by and for youth, providing outreach, education, training and support to youth infected with, at risk for, and affected by HIV and is the only agency of this kind in Canada that is peer-driven. All of YouthCO's programming involves youth providing support and prevention/education services to other youth. The agency also has a philosophy of harm reduction, confronting the realities faced by youth in a non-judgmental manner and providing the information needed to make safer choices. Using youth themselves to provide support and prevention education services to their peers has been an effective strategy. YouthCO is known for its innovative training workshops and resources, developed by and for its young target group.

Any youth between the ages of 15 and 29 can access YouthCO's services or get involved as a volunteer. Originally the agency was entirely volunteer-driven but over time staff members were added and Board membership became more clearly defined. All Board members have to be under the age of 30 at the beginning of their two-year term; two positions are open to individuals who are HIV positive and two are for individuals under the age of 19. The Executive Director is an ex officio member of the Board which meets every two weeks. The duties of the Chair rotate among Board members. As time has passed, the Board's role has changed from that of a working board to that of a policy board. Several committees have been established including Finance, Human Resources, Fundraising and Policy/Governance. Working with a young target group has its own particular challenges. As one member described the Board experience: 

You have to be committed to the work. It is a challenge to work on the board of a youth organization. There is a lot of turnover.... They have a lot going on in their lives. We don't have any real strict criteria, it is more passion driven, and the people on the Board really just love it. People are gaining skills....The Board looks at the long-term determinants of health and the youth population. We look at projects staff propose and either yea or nay the ideas. 

Many YouthCO initiatives are primarily volunteer driven. For youth to get involved, they just have to contact YouthCO, complete an application form and have an informal interview to determine their interest area. All volunteers attend core training and then are trained in their area of interest. At the time of our visit there were 76 active volunteers at YouthCO. They had contributed a total of 364.5 volunteer hours during 2001-2002 on hepatitis C-related programming. 

The agency has three main programs. The first is a support program known as the Positive-youth Outreach Program (POP). It supports youth living with HIV so that they can work with other HIV-infected youth by offering psycho-social support, advocacy, referrals and education. Activities include a monthly free dinner/discussion group, a drop-in support group, social events, advocacy training, and outreach. YouthCO also offers monthly workshops, called FIRESYDE Chats, which are delivered by members of the local sexual health community on issues related to youth, health, sexuality and harm reduction. Youth clients who receive YouthCO's support services go through an intensive orientation process including a preliminary interview and three meetings focusing on referral to related agencies, follow-up and placement. Typically, YouthCO adds between two and four new clients a month.¹¹ 

A second main program area is volunteer education and training. YouthCO provides a variety of training programs to meet the needs of youth volunteers to prepare them to carry harm reduction messages to youth and community audiences. Programs include Core Training (an interactive forum usually held on a weekend which explores the basics of HIV/AIDS and risk reduction); Speaker's Bureau Training (which focuses on public speaking and group facilitation skills); Outreach Training (which prepares volunteers for outreach education) and Theatre Training (which uses a popular theatre format). Other training opportunities are provided in such areas as office support, resource development, newsletter production and fund development.

The third program area is prevention/education. Through the Speakers' Bureau, YouthCO peers provide innovative, accessible education both to students, youth groups, and street-involved youth on the one hand, and to youth service providers, outreach workers and agencies with youth in their mandate on the other. Their Theatre Project offers an innovative, interactive method to get people thinking and talking about the issues around youth sexual health, self-esteem and related issues such as drug use, racism, homophobia and assertiveness. The C.H.O.I.C.E.S. Program provides training on peer education to schools and groups in remote or rural BC so that youth outside of the Lower Mainland can be empowered to create self-sustaining groups of peer educators to address HIV and sexual health issues in their own communities. YouthCO also provides outreach services to disseminate educational resources at youth cultural events such as concerts, festivals, fund raisers and performances. In order to capture the attention of their target group, many youth-friendly, accessible educational resources, such as videos, brochures, posters and stickers, have been developed by YouthCO staff and volunteers. They also publish a quarterly newsletter for members, volunteers and donors called SPICY, and manage a website at www.youthco.org. 

The YouthCO HepCATS Project 

Proposal Development 

In 1998, YouthCO staff had identified hepatitis C as an area of concern for an increasing number of clients and while there had been no formal needs assessment, they estimated that 90% of their support clients in the Downtown Eastside were co-infected.¹² In addition, many clients not currently co-infected were at risk because of drug use and such factors as poverty, homelessness, addiction and ignorance. 

Staff conducted a literature review and found that co-infection with HCV and HIV was on the rise, especially for people who use intravenous drugs or those involved on the street. Thus they saw their street-involved target population as being at risk and, further, for those whose immune systems were already compromised through HIV infection, co-infection with HCV was likely to magnify the threat. They conducted some focus groups and consulted with individuals who were either infected with or affected by hepatitis C. In November 1999, they prepared a proposal for Health Canada's Hepatitis C Prevention, Support and Research Program, Prevention and Community-based Support Regional Project Funding for the HCV Enhancement Project (as it was originally called). The funding requested was $50,000 per year for a three-year period. Most of the budget was for the salary of the HCV Enhancement Project Coordinator, but some resources and leased equipment were also included.

Around the same time, Health Canada also received a proposal from the Portland Hotel Society, an organization that managed the funds for the Vancouver Area Network of Drug Users (VANDU), an agency working in the same neighbourhood. Although their target groups were different - people who use illicit drugs at VANDU and youth co-infected/at risk of co-infection of HIV/HCV at YouthCO - Health Canada funded the two agencies for a joint project, each to receive $22,500 per year for three years. Their funding approval forms stated that: 

Together, these two organizations will collaborate with others to develop a multi-agency approach to community development related to Hepatitis C in Vancouver. ... Target populations will include members of both organizations, staff, volunteers, and broader at-risk populations in Vancouver.¹³ 

Joint collaboration was mandated in several areas, including: 

• Inter-agency referrals where appropriate;
  
  
• Outreach by the YouthCO HCV Project Coordinator at VANDU and among VANDU user groups where appropriate;
  
  
• Sharing training activities (YouthCO to share expertise on issues related to sexual health and HIV, VANDU to share expertise on attracting the participation of drug users as volunteers); and
  
  
• Cross-agency resource and materials distribution.¹⁴ 

In practice, however, the interaction between the two agencies was limited to the distribution of brochures and information sharing about activities. As the Executive Director of YouthCO commented: 

VANDU does not have a lot of youth clients and it has been a strange marriage that never really happened. We keep VANDU updated, but we don't really involve each other. 

Project Administration 

Originally known as the HCV Enhancement Project, the project's name was changed to HCV Advocacy, Training and Support, or "HepCATS". Its goal and objectives were as follows:

YouthCO's annual operating budget is approximately $360,000, the majority of which is funded by Health Canada's Aids Community Action Program (ACAP). HepCATS project funding accounts for approximately 6% of the total agency budget. However, the project has had a pervasive effect throughout the organization. 

As soon as funding were received in the late fall of 2000, the YouthCO Board expanded its mission statement to address issues relating to hepatitis C and co-infection. 

According to YouthCO staff members who were interviewed during our visit, the mandate change did not happen without some controversy but as the Executive Director explained, YouthCO was better positioned than most agencies to deal with the shift in focus: 

A lot of AIDS service organizations have been struggling with the shift from AIDS being a disease that affects the gay community to one that affects the drug using community. We have been in a better position to handle this shift since our focus is on youth (gay or drug using). 

A half-time HIV/HCV Outreach and Support Coordinator was hired to provide outreach, support and advocacy services. Later, the position was augmented for one year to a .75 position. Staffing at YouthCO was as follows: 

During the first year of the project, retaining staff in the HCV Outreach and Support Coordinator's position was a problem, particularly due to issues associated with addiction. As the Executive Director explained: 

Our support is peer based. For hep C, the staff leading the support needed to be HIV/hep C positive. A challenge is that we need to provide support to the person in the position [to] deal with these realities....A couple of the support group leaders relapsed back to using drugs. Exposure to the drug-using community again through their work as a support group leader is a risk factor - the drug-using community is a powerful trigger for these people. Youth are vulnerable as it is; maybe it is not appropriate to put them in these situations.

Subsequently, YouthCO widened its eligibility criteria for this position to include non-co-infected youth.¹⁶ Despite this issue, it was apparent to us during our visit that the comfort and familiarity between YouthCO staff and clients was partly due to the fact that some staff members were also struggling with their own positive status, demonstrating the strength of the peer-based model. They could relate to clients because in some cases they had been there themselves. The staff was young, hard-working and passionate about their role. They believed that YouthCO was making a difference and cared deeply for their clients. 

Key Project Activities 

Volunteer Training 

As the main tenet of YouthCO is by youth for youth, the peer-driven model was central to program delivery. With the addition of hepatitis C prevention, awareness and support to their mandate, training activities and materials were adapted or developed to include the relevant information. In the fall of 2000, peer educators and other volunteers received training on HCV as well as HIV for the first time. In addition to basic HCV prevention education, offered in Core Training, all volunteers were also required to attend the Hepatitis: Beyond the Basics workshop, offered by the physician from the Three Bridges Community Health Services, a key YouthCO partner. Another partner for training was HEP/HIVE (a HIV/AIDS service organization). 

In 2001-2002, YouthCO offered three core training sessions and four HCV-related workshops for staff and volunteers. Five new HCV-positive peer educators and 35 volunteers were trained on such topics as: 

• Hep's A/B/C: Beyond the Basics 
• Youth and Addictions 
• Health Interventions that Matter with Youth 
• Epidemiology of HIV/HCV among Lower Mainland Youth 

YouthCO staff continually try to improve their peer education training methods and formats through research and through the use of feedback received from participant evaluations. Behavioural change is a key focus. As one staff member commented on the training process: 

The number of youth who come to us after taking Core Training and say, " WOW! I feel excited about what I've learned and I want to share this." Having youth come back and report a behaviour change is really exciting. In working with youth there is not the kind of top down approach - there is a lot of respect for youth delivering prevention messages to other youth. Working with and collaborating with youth is very exciting, frustrating and inspiring. 

After two years of integrating HCV information into YouthCO's programming, the 2001-2002 Project Progress Report was able to state that "all staff and volunteers are now fully trained on HCV transmission, prevention and viral progression."¹⁷ 

Peer-based Support 

To provide in-house psychosocial peer-based support, the HIV/HCV Outreach and Support Coordinator established a regular fixed time that youth could come to the YouthCO office for peer counselling by providing a safe environment for youth to come together to talk about personal issues and provide or receive support. The support group was called Hep CATS Chat. Key activities included one-on-one support sessions, advocacy and group dinners. As the Executive Director commented:

We provide an opportunity for people to come and talk about the issues, it is invaluable to provide a space for people to come and share information. 

The twice-monthly support dinners were the peer-based support component's most successful activity and became one of the main ways of connecting HIV positive and HIV/HCV co-infected youth. A total of 58 youth attended these nourishing dinners during 2001-2002. Once a month, a professional from the community was invited to attend the dinner and answer questions in an informal way. 

Advocacy services were also provided to help co-infected youth complete their applications for income assistance and disability benefits. One-on-one advocacy appointments were conducted with 10 HCV+ or co-infected youth during 2001-2002. 

However, staff turnover had made it difficult to attract attendance in a consistent way. As the Executive Director commented: 

An important consideration when working with vulnerable youth populations such as street-involved and HIV+ youth, as well as young IDUs, is the notion of trust. Feedback from these youth populations has repeatedly revealed to us the importance of staff consistency in order to develop and maintain trust with youth whose lives have been marked by instability and feelings of betrayal - by birth parents, foster parents, communities and "The System" in general. As a result, in the Spring/Summer season, we noticed a sharp decline in attendance at activities like support drop-ins and discussion groups, as well as a decrease in the number of one-on-one support services we were able to provide.¹⁸ 

Even after staffing had stabilized, they found that attendance at the support group was still low - only 3 HCV positive or co-infected youth joined the group in 2001-2002. YouthCO staff reported that after talking with other HCV and HIV support groups in Vancouver that there seemed to be a trend towards decreased participation in this type of activity. Instead, staff were considering canceling it and focusing instead on other more successful strategies such as a needle exchange. 

Outreach 

Prior to the inception of the HepCATS project, most of YouthCO's education programs were targeted at youth already accessing school systems and youth groups. With the inclusion of HCV in their mandate, it became a priority to actively reach out to "disenfranchised" youth, especially those living on the streets of Vancouver's Downtown Eastside/Downtown South.¹⁹ Several target sites, already long-term partners of YouthCO, were identified to receive HCV outreach services and resource materials. These included: 

• Boys-R-Us (male youth sex-trade workers)
• Pride Health Services (gay, bisexual, transgender and lesbian youth) 
• BC People With AIDS (BCPWA) Lounge (HIV and HCV positive youth) 
• Average Joes (gay men living with HIV/AIDS - all ages) 

Another outreach activity was Street Sweep which was initiated in January 2001 in conjunction with other agencies in the Downtown Eastside. The purpose of the sweep was to reach street-involved youth in their own environment rather than waiting for them to come to YouthCO. Once a week, two staff members walked a three-by-ten-block area around Hastings Street in the Downtown Eastside. They visited all the organizations along the way that provide services to people who use intravenous drugs in order to refill their supply of YouthCO resources. These included such agencies as the Youth Activity Centre (YAC), the Downtown Eastside Youth Action Site (DEYAS), Aboriginal agencies, a women's shelter and drop-in centre, health clinics, and a housing project. 

On the afternoon that our researcher accompanied the street team, there were uniformed security guards in front of stores in the area. Many police were visible, as were a number of outreach personnel from other agencies. As the team moved up and down the streets, they handed out lollipops, condoms, and resource materials, primarily to women and youth whom they felt to be most at risk. In one area, in front of two large hotels, a crowd had congregated. Approximately 200 people were milling around, openly shooting drugs, making deals or soliciting. There was a smell of urine and garbage emanating from some of the alleys; however, no needles were evident in the litter along the curbs, likely due to frequent clean-up activities. Some people ignored the offer of a lollipop, some smiled and thanked the team members, and some asked for more information about the resources or about YouthCO. 

The enormous social problems evident during this short walk were daunting, but, as the staff members reflected: 

The sweeps are small steps and make a small difference. 

It was obvious that any positive change, however small, was absolutely critical. During 2001-2002, 24 street sweeps were conducted and 1,202 HCV prevention resources were distributed. 

Community-based Prevention Education 

YouthCO began to incorporate HCV prevention education into community-based activities in 2000. Peer educators from the Speakers' Bureau took the message to youth in schools, youth detention centres, youth transition houses, youth groups, street-involved youth and service providers. They reached over 2000 youth in 2001-2002 throughout the Lower Mainland through the delivery of 78 presentations. 

The Sexual Health Game was a popular training tool developed by YouthCO to present HIV information to school and community groups. It was modified to include HCV questions as well. Sample questions included: 

• What area of the body does hepatitis affect?
• Which two hep viruses have preventative vaccines? 
• How is hep C transmitted? 
• How long does it take for a body piercing to heal completely?
• Name one place you can go to get clean needles.  

However, the agency had found that the most powerful training tool was the personal experience of the peer educators. As the 2001-2002 Project Progress Report commented: 

Due to their recent experience on the issues under discussion, peer educators such as those involved in YouthCO's Speakers' Bureau are often perceived by their audiences to add credibility to their messages. As "positive role models", peer educators also work to contribute to the social and group norms favouring HCV risk reduction behaviours among youth.²⁰ 

After two years of working to integrate hepatitis C information into their presentations, it now comprised 50% of their message, the rest focusing on HIV and harm reduction. 

The Theatre Troupe also began to use HCV-related information in their presentations. In 2001-2002, approximately 200 youth attended their performances on harm reduction. They used the popular theatre philosophy of working from the inside to educate youth on HCV-related issues. As the project's recent Progress Report explained: 

When the Theatre Troupe offers youth audience members the chance to make an "intervention", they may also be offering youth the opportunity to change the role of drug-related "gatekeepers" in their own communities. In this manner, YouthCO's HCV prevention programs work to alter the "norms" in the many high risk situations that youth face.²¹ 

YouthCO anticipated a significant increase in the number of performances requested over the summer of 2002 due to a project planned on theatre promotion. 

Shoot for Safety: Conference on Youth and Hepatitis C 

Another key activity was the Shoot for Safety conference held in March 2002. The purpose of the conference was to foster understanding and networking among a diverse range of groups in the community including youth infected with/affected by HCV, health care providers, youth workers, Aboriginal youth and Aboriginal youth workers. It provided prevention education, on-site support, referrals, networking and testing/clinical services.²² 

As one Board member explained: 

We were reaching out to communities who aren't normally included in conferences...it was a good and interesting range - a cool mix of people. 

While about 70 to 80 people were expected at the conference, nearly 110 individuals from all over the province attended. More than 50% of those attending were youth, including many who self-identified as street-involved, HCV positive and/or Aboriginal.²³ As another Board member commented: 

I had an overwhelmingly positive experience with the conference. It is important for people to come together and share their experiences. People infected have an enormous amount to say about prevention (because it didn't work for them). 

Resource Development 

Several years previously, YouthCO had used youth focus groups and worked with a designer to develop a line of HIV/AIDS-related materials with a youth-specific image. In 2000, staff began to identify HCV information needs and gaps in resources and in 2001 they established a Resource Development Advisory Committee, comprised of over 30 individuals from a variety of community agencies. 

It was this committee that changed the project name from The HCV Enhancement Project to YouthCO Hepatitis C Advocacy, Training & Support (HepCATS). With the same designer, a "jazzy, youth-friendly, ‘street-smart' image"²⁴ was created - the HepCAT. 

Several new resources were developed and circulated as follows (2001-2002 circulation figures provided in parentheses): 

• YouthCO HepCATS brochure - provides youth-friendly information on HCV transmission, risk reduction, disease progression, symptoms and HCV/HIV co-infection (2,150 brochures); 

• Hepatitis C: Shoot for Safety - Know your Risks poster and sticker (134 posters and 1,199 stickers); 

• Hepatitis C-specific club cards (1" x 1"), trading cards and temporary tattoos to be used at raves and during street sweep activities (1,357 cards and 1,521 tattoos); 

• Body Art Body Smart series of cards on tattooing, piercing and branding (423 sets); 

• The Facts brochure for service providers; and 

• Calling All Volunteers brochure for volunteer marketing. 

In addition, older materials were updated to include HCV information. These included: 

• YouthCO: The Complete Story brochure; 

• Agency stickers and postcards; 

• Safer Sex Tips and much, much more - from the files of Dr. Willy, a risk reduction brochure; 

• The Sexual Health Game; 

• Training resources for peer educators; and 

• The agency website. 

The resource order form was updated and circulated to over 200 service providers in the BC Lower Mainland and throughout Canada. The agency newsletter was restyled for a more cutting-edge image. It was written, edited and produced by youth on topics related to HIV/AIDS, Hepatitis C, sexual health, drug use and upcoming YouthCO events. New submissions of editorials, poetry, artwork and rants were welcomed.

Resources produced by YouthCO were also distributed at all workshops, training events and theatre performances. Outreach volunteers also provided materials at community events such as concerts, festivals, fairs, raves and demonstrations. Requests for brochures, posters and stickers has grown significantly as awareness of YouthCO's HCV programs and services have expanded. The print materials and resources have been promoted and distributed to agencies not only throughout the Lower Mainland but also across both British Columbia and Canada as well.

YouthCO HepCATS Project Accomplishments 

1. Development of a peer-driven support service model 

YouthCO's greatest accomplishment is clearly the development of an innovative, peer-driven support service model which works with this young, at-risk population. When clients were asked what they liked best about YouthCO, their comments indicated how they valued the focus on youth: 

The approach is very positive in a youth's life. The support is really helpful. They are there for you. 

I like best that I feel good when I come here. I like coming here, I don't like places that feel like a clinic atmosphere. It is a place to relax. 

YouthCO is youth-driven. The people that are here have the disease. They are really caring, gentle and open people. It's fun to come here. It is also very educational. 

Staff agreed that the youth-centered approach was effective: 

Having the support from someone your own age makes a world of difference. Isolation is common, so it is great to do anything to break that isolation. YouthCO is thought of as a leading organization for youth in the community. Our focus is HIV/hep C, but it is thought of by the community as [being] much broader. 

Respect for youth was the cornerstone of the approach. Even the conference steering committee had HCV positive youth, as well as other youth volunteers, as members. One conference participant commented: 

We need to engage youth and listen to them. It's tiresome listening to adults and professionals who always impose their knowledge/information. 

The peer-driven model allows staff and volunteers to work with co-infected and at-risk youth in a positive way. One client's comments pointed to the value of involvement: 

They are always calling and asking if I want to be involved in activities. I have been [HIV] positive for eight years now. I learn more by being involved. 

And staff also saw the benefit of youth involvement in terms of growth: 

The very small things - watching people rebuild and gain confidence, watching them deal with the realities of living with this disease is pretty huge. 

2. Development of youth-friendly information on hepatitis C  

YouthCO staff and volunteers had worked hard to make information on HCV more accessible, through the development of innovative and engaging youth-friendly materials and resources. These have been designed to appeal to a variety of learning styles, abilities and literacy levels. In addition, significant youth input has increased their utility as they suit young lifestyles (e.g., club cards and temporary tattoos) and use humour. As one client commented: 

The information at YouthCO is good and it is presented in a real basic way. It is made for people to understand - it's not for doctors. If you want more information, you can get it as you need it. There is no dumping of too much information all at once. I don't see anywhere else than YouthCO where we can get this kind of information in Vancouver.

As one volunteer commented about the resources: 

These brochures are great. I get the kids to take brochures and encourage them to give to their friends, etc. The whole goal is to create awareness. Because of the logos, etcetera, everything is viewed as "cool". They can read it and understand it. They have a question and they can find the answers here. The brochures are cool. They get passed on from youth to youth. 

The fact that YouthCO materials were being widely disseminated demonstrated their utility with this target group. 

3. Development of partnerships 

Promoting community partnerships has been an important focus for YouthCO and staff members have been active in this regard. The Shoot for Safety conference was a catalyst for partnership development and by organizing it, YouthCO had the opportunity to develop closer ties with other agencies interested in HCV, including: 

• Chee Mamuk (an Aboriginal education program of the BC Centre for Disease Control) 
• AIDS Vancouver Island 
• YM/YWCA Street Outreach 
• Providence HealthCare 
• Vancouver Street Nurses 
• Dusk to Dawn 

The conference helped to build links to the community. As one staff member commented: 

We are also talking to teachers, street workers, nurses and doctors. We bring people together to work on hep C. We are re-energizing people to get active in their own community. 

Other recent activities which promoted partnerships include attendance at a meeting of the Hepatitis C Collaborative Circle in Nanaimo, presentation of a workshop on youth and hepatitis C at the Canadian AIDS Society (CAS) Skills-building Conference in Montreal and attendance at two Health Canada Community-based Support Program meetings. At the most recent Program meeting, YouthCO staff members were able to develop other community partnerships, particularly with rural HCV projects in the province and gained an opportunity to work with the BC Centre for Disease Control to promote YouthCO's HCV services on the BC CDC website. 

Challenges 

When asked what challenges or obstacles were faced by youth infected with or affected by HCV, staff, clients, peer educators, volunteers and community stakeholders had much to say. There was a lot of agreement among their views and the three challenges they identified, while not specific to YouthCO, reflected more over-arching issues confronting youth and the community in relation to hepatitis C. 

1. Stigma 

While public awareness for youth about hepatitis C has been increased by the many presentations made by YouthCO staff and volunteers at schools and other youth agencies in Vancouver and the Lower Mainland, there was still a lot to be done to combat attitudes about hepatitis C. As a staff member commented: 

It is still hard to talk about needle drug use in schools. Teachers and administrators don't want us to mention that at all. It makes it hard for us to tell youth how to protect themselves. Youth don't know that sharing needles for tattoos or steroids or cutting can put them at risk. 

A peer educator described the attitudes she had encountered in schools: 

It is automatically hard for me to go into the high schools and provide education because I am female and talking about sex....[We] need more open-minded people out there doing this and it is needed at younger ages... into the elementary schools because they are sexually active but no one wants to admit it.

2. Lack of physician information and training 

Appropriate information for physicians' use was often mentioned as a gap. As one client commented: 

Unless you have a doctor who wants to go deeper on hep C, all you get is a single one-pager pamphlet that explains hep C in very general terms. There is no information on medication, on how to eat and on how to live with hep C. 

A YouthCO staff member supported this view: 

Generally, general practitioners don't have enough information/training on hep C. If the doctor can't give out the appropriate information, who can youth contact if they have hep C, who can they talk to? 

A physician at the Three Bridges Community Health Centre stressed the need for physician training and associated research: 

For individual practitioners, hep C is one of five other things they do. It requires CIHR funding to attract physicians to become academic specialists in hep C and out of that a hep C clinic occurs that also does research. Until the centre exists, other GP's have less to work with. 

3. Access to treatment in the context of addiction  

Another serious obstacle was the lack of access to treatment for people who use intravenous drugs. Respondents commented on the community's resistance to the addictive behaviours of this target group. As the physician at Three Bridges commented: 

The biggest barrier is access to treatment for people with addictions. They are not wanted in the clinics and support groups, etc. They have a whole load of maladaptive behaviours.... We need to support people with addictions. 

A client shared a personal perspective: 

They just push IDUs into the cracks and forget about them. The hospitals ignore hep C as well. When someone comes in with hep C and a cough, they tell them to get some cough medicine.

As a community stakeholder explained: 

The biggest challenge people face is treatment. Will they qualify and will they be able to handle the treatments? The criteria in BC are very rigid and a lot of our clients don't meet these criteria so treatment is denied. 

For the Executive Director, the barriers faced by the target group were many: 

It is hard to distinguish the barriers they face because they have hep C and the barriers they face from the activities and the lifestyle that led them to becoming infected with hep C (drug use, social barriers, poverty, addiction, and lack of education on a variety of health issues). [They face] barriers on how to take care of themselves; these individuals don't have access to a lot of healthy things in general - safe home, healthy food, support. Life in general can be a barrier. 

Concluding Remarks 

YouthCO has been able to make contact with this isolated target group and has begun to provide HCV education and support in a way that has gained respect on all sides. Its peer-driven programming has resulted in creative responses to this serious health and social issue. As one staff member commented: 

We filled a gap. There was nothing around youth and hep C going on in Vancouver before. It was a big glaring gap. It has done a lot for the idea of blood borne diseases in general. I get the idea that youth are talking a lot more about blood borne diseases in general. 

When staff members were asked to comment on the difference which the HepCATS project has made, they stated clearly that the project had a benefit on the agency as a whole. 

The hep C project has opened up our agency. We are accessing so many other youth since the hep C project started. We are able to bring in youth [who are] using [drugs] into the agency. Our services respond better to youth because a lot of our volunteers are under 21 years of age and I think that makes our services richer. Youth have access to more information and opportunities to really talk about things that preoccupy them. 

As the project continues to move ahead, the next challenge staff have set for themselves is to develop a needle exchange to provide yet another way to build rapport with youth and support harm reduction. Judging from their record to date, this effort is likely to meet with success as well. 

The following types of documents were reviewed in the preparation of this case study: 

• Program documents from Health Canada 

• HepCATS Shoot for Safety Conference package 

• Proposal for needle distribution 

• Newsletters (Spicy)

• YouthCO resources including pamphlets, stickers, temporary tattoos, trading cards and posters 

• Job descriptions 

• Scene from theatre troupe 

• Background information: history and mission statement

References 

1. Responding to an Emergency: Education, Advocacy and Community Care by a Peer-driven Organization of Drug Users. A Case Study of Vancouver Area Network of Drug Users (VANDU). Health Canada. 2001. p. iii.
   
   
2. Health Canada Notifiable Diseases Annual Summary 1999. Canada Communicable Diseases Report, 2001.
   
   
3. BC Centre for Disease Control, Backgrounder 1: Hepatitis in British Columbia, www.bccdc.org/hapatitis/backgrounder1.shtml, July 13, 2001.
   
   
4. BC Centre for Disease Control, 2000 Annual Summary Report, pp. 29-30, www.bccdc.org/cdcmain/cdcprf/rpt-annual 2000.pdf
   
   
5. BC Centre for Disease Control Website, www.bccdc.org/hepatitis
   
   
6. http://www.vcn.bc.ca/vrhb/Down_Loads/CCENDU_Report/
   CCENDU_Report_2001.pdf
   
   
7. Statistics Canada, Census 2001, 1996, www.statcan.ca
   
   
8. BC Centre for Disease Control, 1999 Annual Summary of Reportable Diseases, p. 33-34, http://www.bccdc.org/content.php?item=33.
   
   
9. Responding to an Emergency: Education, Advocacy and Community Care by a Peer-driven Organization of Drug Users. A Case Study of Vancouver Area Network of Drug Users (VANDU). Health Canada. 2001. p. iii.
   
   
10. Background Information: YouthCO History and Mission Statement
    
    
11. HCV Enhancement Project: YouthCO Hep CATS Project Annual Report: September 1, 2000 - August 31, 2001. p. 9.
    
    
12. Funding Approval Form-HCV Enhancement Project. Population and Public Health Branch, Health Canada. July 19, 2000.
    
    
13. Funding Approval Forms-HCV Enhancement Project & Hypes for Health Living. Population and Public Health Branch, Health Canada. July 19, 2000.
    
    
14. Letter of Agreement, YouthCO AIDS Society & Vancouver Area Network of Drug Users, May 24, 2000.
    
    
15. Project Progress Report, March 31, 2002. p. 4. The project objectives have been synthesized from the original work plan (from 4 to 3) to avoid repetition. P. 12.
    
    
16. Personal correspondence. September 5, 2002.
    
    
17. Project Progress Report. March 31, 2002. p. 15.
    
    
18. Ibid, p. 12.
    
    
19. Project Progress Report, March 31, 2002. p. 24.
    
    
20. Project Progress Report, March 31, 2002. p. 22.
    
    
21. Project Progress Report, March 31, 2002. p. 22.
    
    
22. Personal correspondence. September 5, 2002.
    
    
23. Personal correspondence. September 5, 2002.
    
    
24. HCV Enhancement Project: YouthCO Hep CATS Project Annual Report: September 1, 2000 - August 31, 2001. p. 43.

 

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