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Hepatitis C: Intervention Programming for Youth at Risk - Final Consolidated Report

3. Interviews with intermediaries

To determine the best way to reach youth at risk of contracting hepatitis C, interviews were conducted with intermediaries who deal with such youth on a regular basis. Most of those interviewed work for youth social service organizations. Interviewees also include some Health Canada employees responsible for funding hepatitis C programs.

The objectives of the interviews were:

• to determine the needs of youth with regard to hepatitis C;
• to identify key messages that resonate most with youth;
• to determine what means or approaches intermediaries find effective in communicating the risk of hepatitis C to youth ;
• to highlight current programs and materials that are particularly effective; and,
• to determine the needs of intermediaries, with regard to hepatitis C.

Twelve telephone interviews were conducted. (See Appendix A for the interview guide; Appendix B for the list of those interviewed.)

3.1 Communications - Issues and Vehicles

Health issues for youth at risk

Intermediaries were asked for their opinions on key health issues for youth at risk. A number of people did not feel that the youth they deal with consider their health to any degree. They pointed out that for some, meeting their need for drugs or alcohol was paramount, followed by the basic needs for food and shelter. Personal safety and transportation were also mentioned as concerns, particularly for youth in the north.

For many, a feeling of invincibility or else hopelessness for the future means that health issues do not figure greatly in their thinking.

"The youth we deal with don't have specific health concerns. They don't think they will live that long."

Specific health issues mentioned include the following.

• Information about safe drug injection - how to inject, where not to inject, etc.
• Mental health issues, including self-esteem and abusive relationships. Lack of acceptance is a key factor to their mental outlook, and this is closely tied to their drug use and street culture. Their peer group helps them "connect" and feel like they belong.
• Having access to health services, the information and resources to make healthy choices
• Infection that can arise from piercing
• Sexual health, including STDs, teen pregnancy, AIDS
• Physical abuse, both in their past and current living conditions

AIDS Calgary conducted a survey of youth in their programs in 2000, and received 200 responses. The key topics the youth identified as relevant (from the choices provided) included sexual health and negotiating safer sex. Hepatitis C was not mentioned.

Awareness of the risks of hepatitis C

A wide range of opinion exists regarding awareness of hepatitis C. Some intermediaries reported high awareness among the youth they deal with, usually because of personal experience (youth in their immediate peer group have hepatitis C). They understand the main transmission methods, and know the long-term impact of hepatitis C. Others report little or no awareness of the disease among the youth they interact with. In the middle are those youth who are aware of the disease, but have only the most basic information.

When first being told about the disease, many youth think of hepatitis C as "scary" and fear getting tested, even where free testing is available. At the next level are those who are aware of hepatitis C and understand that it is transmitted primarily through sharing injection drug and piercing equipment. They are less aware of other methods, such as sharing toothbrushes, razors or equipment for snorting/smoking drugs. Those who seek more information seem to want very practical advice about the issue, including:

• How and where can they get tested?
• How is it transmitted? (They particularly concerned about whether hepatitis C is transmitted sexually.)
• Is it treatable? (Many believe it is not.)

One element that may be important in reaching youth is the question of whether they identify themselves as being at risk. For example, first-time or infrequent injection drug users are considerably less aware of the risks of hepatitis C than longer-term users. They tend to feel (even when informed about risk factors) that this is a disease of the hardcore, of which they are not a part. This may actually make this group at higher risk for infection.

There appears to be much lower awareness of hepatitis C than HIV/AIDS, although those who are aware of hepatitis C think of them as similar diseases.

Key messages

Intermediaries felt that messages about hepatitis C must address youth in their current situations, and that the harm reduction approach is the only viable one with this target group. The messages intermediaries felt were most important for youth to hear were:

• What is hepatitis C?
• You may be at risk.
• You have the power to prevent hepatitis C. (Information on how to prevent it)
• You may have it and not know.
• If contracted, hepatitis C will have a major effect on your life.

It was felt that there should also be a focus on transmission methods such as shared toothbrushes and razors, positioned perhaps in public washrooms, youth shelters and other areas where youth at risk may see them. There appears to be very little awareness of these transmission methods, and intermediaries are confident that knowledge in this area would significantly alter behaviour like sharing toothbrushes and razors.

The way messages are positioned and delivered was also felt to be very important to their effectiveness. Messages must respect youth, and impart the feeling that they are valued. Messages must also be geared to specific risk behaviours and the age groups to be relevant to that target audience. For example, young teens are more likely to be involved in piercing or tattooing than injection drug use.

"It is essential that the feeling that they are important and special be built into the message. Only if that is done will they be receptive to any information about prevention."

Story telling was described as a particularly powerful vehicle to get messages across. Hearing how hepatitis C affects a peer was felt to be the most powerful message possible. This is consistent with effective processes identified for the prevention of smoking among youth.

It was noted that some youth may be resistant to messages about hepatitis C, just because they hear so much about AIDS that they tune this type of messaging out.

The best messenger

The source of the message is felt to be at least as important as the message itself. While some people felt strongly that youth are the most effective communicators with other youth, others felt that credible adults could be equally successful. Attitude, not age, was felt to be a key factor in credibility.

Youth rule
Many people cited another youth as the person most likely to be effective in reaching youth at risk. The credibility and transparency that youth have with each other cannot be replicated. Youth who are themselves affected by hepatitis C are felt to be the best messengers. One of the most useful things the peer educators do is give referrals to other youth, as to where they can get other help and information. Their references are credible, where those from an adult might not be.

Youth should also be directly involved in the development of messages to ensure that they are consistent with street culture and acceptable to youth. Unconventional methods of getting the messages out may also be required. (See the next section, Formats, for more on this.)

Intermediaries noted, however, that youth-to-youth programs can be difficult to organize and maintain. A significant amount of staff time must be devoted to organizing and nurturing youth as leaders. The stigma of becoming part of the "establishment" is a problem, and often youth may participate in a program, but don't want to be perceived as leaders among their peers.

In addition, proper screening and training are required to ensure the youth intermediaries are properly prepared. In sensitive areas, when dealing with youth involved in the sex trade for example, great care must be taken to ensure the youth intermediary is trained to deal with difficult or dangerous situations. In the case of the sex trade, there could be situations in which the youth intermediaries might be mistaken for prostitutes themselves.

A prior history in the area, while providing the youth with a clear understanding of what to expect, may also put the youth in a precarious position where situations may act as "triggers" to resume high-risk behaviours. For example, seeing drug paraphernalia may induce a past user to resume injection drug use, if they are not fully free from the psychological, as well as the physical ties to drug use.

It was noted that people who do outreach, whether as youth or adults, must not only be able to get a message out, but also to process and respect the feedback they receive. Skills and training are required to do this effectively.

Adults with empathy
Adults from a wide range of backgrounds can be successful intermediaries, as long as they approach the task with honesty, respect for the youth and an open, non-judgmental attitude. Adults who themselves have an alternative lifestyle, such as artists, extreme athletes or tattoo artists, or those who come from street culture, can be extremely effective. Those who work in shelters and food banks may also relate well to street youth, although doctors, nurses and other professionals can have the same success, with the right approach. An open and accepting attitude, respect and no sign of being patronizing were cited many times over as the key attributes of people who work effectively with youth at risk. It was noted that it tends to take longer for an adult to make a connection with youth than it would for another youth; however, once a relationship is established it can be equally effective.

A joint effort
Partnerships between youth and adults can also work well. A middle-aged nurse cited her success in joining with a youth to go into areas that had never received outreach services. Paramount to success was the fact that she presented herself as nothing other than what she was, a researcher. Acting falsely "cool" or "hip" is spotted and immediately shunned by youth.

Formats

The intermediaries interviewed noted that different communications vehicles appeal to different types of youth. Generally, visual materials like posters or postcards, work better than written ones. Understanding the prime audience, and making sure the products fit the program, are keys to success. As with all communications vehicles, literacy and cultural context are key issues. Again, materials produced by youth for youth are most effective. Some other general rules of communicating with youth were also provided.

Language is important
Anything preachy, too wordy, or with too many statistics must be avoided. Language must be clear, but not "dumbed down." It must be empowering, and provide the youth with the information and the questions to ask so they can take this health issue into their own hands. For example, kids contemplating a tattoo must feel it is in their power to ask for proof that a new needle is being used.

Materials must be developed specifically for youth, and not for a general audience. Intermediaries noted a real void in materials for youth aged 12 to 16. Scarce resources will often drive an attempt to reach all groups with one vehicle, but this approach rarely, if ever, works, particularly with marginalized groups.

Size matters
As a general rule, any information that cannot easily be put in someone's pocket is of no use to this audience. Posters may attract attention, but youth are more likely to read something if they can do so by themselves, in a quiet spot, and that means they need to take it with them. Very small pamphlets and postcards with eye-catching pictures were used quite effectively in this way.

A combination of the two types of media may be best, for example, a poster to attract attention on a toilet stall door, and a small pamphlet or postcard placed elsewhere in the washroom where people could take them away.

Innovative formats attract attention
A new approach may be required to get the attention of youth at risk. Examples include putting messages about risk on packages of needles, condoms, matchbooks, toothpaste and bars of soap. Stick-on tattoos were also popular among the youth. A music CD was also suggested, whereby the youth write and perform the music, create the cover design and have hepatitis C messages on the sleeve and as part of the theme of the songs (lyrics/stories) as well.

Electronic vehicles reach some
Drop-in centres, group homes and other places youth at risk gather will often make computers available to them, and youth who have access make good use of e-mail and the Internet. E-mail becomes an easy way to connect with a group of youth through things like rave chat groups, which are used by promoters to let people know a party is coming up. This may be a good venue for delivering information about hepatitis C, and upcoming programs or events. It is best done, however, from the inside, from a youth already part of the chat group.

Although there is the potential to reach a lot of people with a website, it should be noted that many youth at risk do not have access to computers. It may be that service providers and students use these sites more heavily than those to whom they are directed.

Comic books or magazines still work
Publications developed and written by youth for youth can be effective, as long as adults avoid the desire to editorialize or censor the material. In successful magazines, youth are paid a small honorarium for their contributions. Distribution to group homes, youth agencies, stores and restaurants that youth frequent will get them into the right hands.

3.2 Successful Programs

Intermediaries were asked about programs they currently run regarding hepatitis C prevention, and what elements make them particularly effective.

A wide range of formal and informal programs were discussed, including:

• outreach to raves and other events where youth gather;
• theatre, street theatre or video production involving youth in all aspects, from script-writing, to acting, set design and technical elements;
• events with speakers, workshops, displays, hepatitis C testing, etc. (such as Tracks of Y's - "What's blood got to do with it?" [Winnipeg], and others);
• discussion of hepatitis C within other programs, such as needle exchanges, sexual health displays or HIV/AIDS workshops;
• peer health education program, where youth are trained to become facilitators and communicators - giving information to younger kids;
• teen health centres, drop-in centres, supper clubs, etc.; and,
• mobile information units or vans, that go to where youth gather.

"The type of program doesn't seem to be that important, as long as the kids are the ones in charge. They need to make the decisions and make the program work."

Intermediaries pointed out that a lot of good work is accomplished on the streets, without benefit of a formal program. Mobile units (vans or displays) can be effective as identifiers, drawing kids in because they go to where the youth gather. A display that is visually stimulating and interactive can help to open lines of communication. Drawbacks to mobile units or vans are the expense and, in the case of the display, difficulty in transporting it.

A Montreal program trains youth intermediaries, who have themselves come from the streets, to work with youth to build self-esteem through physical fitness and life skills, like learning how to purchase and prepare healthy food, budgeting, etc. The youth transfer the lessons they learn about taking care of their health to harm reduction and prevention. For example, they see first-hand that if they don't eat well, they won't have the energy to participate in a workout, and so on.

Some intermediaries mentioned programs designed specifically for service providers. Rave 101 was one such course being used by AIDS Calgary. It was developed for service providers to increase understanding of the rave culture, dispel its myths and spread the word that health and wellness are promoted through the YES program.

Elements of success

Although the successful programs described by intermediaries varied greatly, they had a number of common elements. Those that involved youth talking to other youth were cited as most successful, when done well. One-on-one contact with a skilled counsellor was also seen as extremely beneficial. Youth at risk need to be heard, and providing them with undivided attention is a clear way for them to know that they have been heard, that they are important. A team approach in which an adult was paired with a youth facilitator was also cited as being effective.

In terms of programming itself, common elements of success used the following approaches.

Led by youth
Key among the elements of success was the need to involve youth in every aspect of a program, from its inception to every step of its operations. Ideally, programs support youth talking to other youth. This ensures that the program will have the credibility and transparency required to be effective in reaching out to youth. It also has the long-term benefit of teaching youth a variety of skills they can then apply to their lives in general.

Programs developed by youth tend to draw out their creativity and build confidence in skills youth themselves may not have known they had. The key to youth involvement is that they maintain control over decisions. In some youth organizations, youth form part of the boards of directors. Adults can assist in providing a venue or forum for the youth to operate, but the youth must be in charge.

"The program picked up considerably once it was youth-driven, after a false start with adults leading the program."

One issue that needs to be handled with care in programs involving youth to youth intervention is the need to set clear boundaries on the youth volunteer's role during outreach. At raves or other party environments, youth volunteers must follow guidelines established by the program and not engage in risky behaviours such as drug use themselves. A Calgary program, Rave Safe, has established such guidelines. Clearly, youth cannot be put into a situation where they may put themselves in danger of any kind, which can happen whether they come from and are well-versed in that culture or not.

Go to where the kids are
Programs, whether formal or informal, that reach out to youth where they already are will be easier to run and more effective than trying to gather youth to an unfamiliar spot. Simply walking the streets where kids hang out will create important connections. Drop-in centres, coffee shops, raves and street clinics are common points of contact. Other locales, like food banks and tattoo parlours are used less often, but are seen as promising outreach points.

Speaking respectfully, but in a way youth can relate to, is also "going to where they are," and an important part of making connections. When dealing with youth at risk, there is no place for censorship or genteel couching of terms. Kids must feel like they can say or ask whatever they want.

Give them what they need
When trying to attract the attention of youth, it helps to entice them with practical or useful items. The YES program provided youth with "love kits." They contained fun and practical products like lollipops, sticker tattoos, condoms and lubricant, along with information cards and stickers that raised awareness about the YES program and its messages. Other programs used coloured condoms as a way of drawing in youth. They were seen as fun and different, and created an opportunity to open lines of communication. Providing food, i.e., meeting basic needs, can also be an attraction. Kids will often come for the food, but stay because of the open, accepting approach of the environment. Learning comes as part of the package.

Make them welcome
As mentioned previously, innovative programs may attract youth, but it is the atmosphere and approachability of the coordinator that works to keep them there. A trusted, credible individual, regardless of age, is key to maintaining productive relationships with youth at risk.

Give them anonymity
When the subject is difficult, such at hepatitis C, it can be hard or awkward to open lines of communication. One program offered an interesting approach to encouraging all youth in an information session to ask questions. The coordinator handed out a number of slips of paper to everyone in attendance. During the session, a bag was passed around and everyone had to put a slip of paper in, whether they wrote anything on it or not. The process allowed youth to ask the most difficult or embarrassing questions they wanted, without fear of identification.

What doesn't work?

Intermediaries were quite clear on the fact that traditional education programs do not work with youth at risk. Pamphlets and posters, in themselves, will do little to prevent the spread of hepatitis C. Websites are accessible only to youth with computers, and videos require a television. Although these vehicles can be used within a program, they must be an integral part of the approach to be valuable. Intermediaries need to have established a respectful relationship with the youth before written materials will be read, never mind acted upon.

They also cited other elements to be avoided with dealing with youth at risk.

Deadlines can kill
It is important to recognize that when programs are driven by youth at risk, meeting deadlines in a conventional government or business environment can be more than challenging. Results may take longer than one fiscal year. While youth often learn about meeting responsibilities through this type of programming, this is often a gradual process. They need time for ideas to percolate, in an environment where it is okay to make mistakes, safely. Because a project has not met its deadlines, does not mean that it was not successful.

Resources rule
Involving as many kids as may require a successful program is often impossible due to limited funding. Often new members simply cannot be added to a group, because resources are already stretched to the limit. This is particularly true in Canada's north, where everything, such as food, heat and travel, costs more. Ongoing funds for staff is also an issue cited by almost all the intermediaries. Promising programs are sometimes cut before results can be demonstrated.

In addition, intermediaries pointed out the long-standing challenge of measuring long-term effectiveness of attempts to change behaviour.

New program approaches

Intermediaries were asked where they would put any resources they were given for hepatitis C prevention. Although many noted that they would simply augment current successful operations, some presented new concepts they would like to pursue.

Train youth
A number of possible programs focused on involving youth to a greater extent. As a basis, they all required appropriate materials and training for youth to provide effective outreach. In order to ensure the youth have the right personal skills, it was suggested that a screening tool be developed as part of a detailed recruitment process. Knowledge of hepatitis C and courses in facilitation and effective listening were felt to be basic requirements. Beyond that, training in conflict resolution, suicide prevention and mental health issues was felt to be important, so that trained youth could identify and refer youth at risk to the appropriate health or social service professionals. Once established, this training could be disseminated as a "train-the-trainer" course, with experienced youth participating in training of other youth across Canada.

In its application, youth would work in pairs, so that trained, experienced youth would be twinned with those in training in a mentorship arrangement. The youth could work in existing programs, including AIDS outreach and needle exchange programs, to create multifaceted prevention programs, building on effective links already created.

Training for credible intermediaries
A number of people who interact with youth have very little information about hepatitis C. Sessions geared to service providers, involving and at least partially led by youth, would help raise awareness and knowledge of youth culture and hepatitis C throughout the health and social services sectors, and beyond. Involving doctors, nurses, teachers, mental health workers, parole and corrections officers would address the traditional professions that deal with youth at risk. Training could be spread beyond these circles, however, to tattoo artists, servers at coffee houses and hairdressers to bring the message to the wider street community. Given a broad enough scope, it could also include training in conflict resolution, how to resource programs and participatory evaluation research.

The end result of such a training session would be a strategic plan, developed jointly between the youth and the service providers to put into action in the community. This format could be used to assist programs across Canada by providing models on how to nurture youth-driven programming.

Involve the business community
Tattoo artists and piercers tend to be held in high esteem by youth at risk. A number of concepts were suggested to involve them in education regarding hepatitis C, from simply distributing written information through these businesses, to arranging for discounts for youth who present a certificate showing they have been tested for hepatitis C.

One stop shopping
One concept suggested providing a range of services to youth and others at risk under one roof. A food bank, medical services, needle exchange program, a shelter and showers, along with counselling services would be provided.

Rural focus
Intermediaries who work in rural areas of Canada noted the need for basic information on harm reduction, and how it applies to hepatitis C. In the Atlantic provinces, for example, there continues to be a need to lay the groundwork on harm reduction approaches. Fewer opportunities for information exchange exist, and anonymity remains an issue in small, mainly rural provinces.

Focus on all risk behaviours
Currently, most information on harm reduction focuses on drugs. A common precursor to drug use, however, is drinking alcohol. It is often a pre-condition for drug use and other high-risk behaviours such as tattooing and piercing. Intermediaries felt there was a need to give kids better information about drinking, particularly among younger and rural youth.

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