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

4. Report on focus groups with youth

4.1 Methodology

The third and final part of this project to determine the best way to reach youth at risk of contracting hepatitis C consisted of focus groups conducted in six cities across Canada (Halifax, Toronto, Calgary, Vancouver, Whitehorse and Montreal). From 10 to 21 youth attended each session, for a total of 73 participants. All the participating youth lived in urban areas.

Due to logistical issues, the group in Montreal consisted of youth intermediaries, rather than youth at risk. The four intermediaries, part of a program called Pairs-Aidants, were youth who had been at risk in the past, but had overcome serious lifestyle issues and become part of a peer-to-peer outreach program operated through a youth service organization.

The objectives of the focus groups were to determine:

• the awareness levels of youth at risk regarding hepatitis C;
• the types of approaches to information dissemination that would appeal most to youth at risk (written, spoken, combination approaches);
• the most appropriate messengers to convey information on hepatitis C to youth;
• formats of information (written and electronic) that would be most effective, including size, graphics, language, etc.; and,
• programs that youth themselves would endorse as being effective in reaching them.

Process

The consultants partnered with youth organizations in each city that met the following criteria; they must:

• reach youth at risk, under 16 years of age, where possible; and,
• have a program (supper club, drop-in centre, etc.) that youth attend.

The criteria the youth organizations were directed to use, in selecting focus group participants, were that they:

• must be fairly communicative and have a relatively high level of function;
• should not be hepatitis C positive;
• should not know whether they are HCV positive or not (as this would indicate they know enough about the disease to have been tested, which means they know much more about the disease than the average youth).

A youth facilitator led the groups, accompanied by an experienced facilitator who was able to monitor the process, ensure consistency, and co-facilitate when required. Youth were provided dinner and a $20 honorarium for attending.

The breakdown of participants is provided below.

City	Participants	Male	Female	Age, other characteristics
Halifax	12	8	4	Ages: 17-22 4 homosexual, 1 trans-gendered, 2 couples
Toronto	10	6	4	Ages 16-23
Calgary	16	11	5	Ages: 15 (2), 16 (4), 17 (6), 19-22 (4)
Vancouver	21	8	13	Ages: 13 (2), 14 (1), 15 (5), 16 (8), 17 (4), 18 (1); a number of Aboriginal and mixed-race participants
Whitehorse	10	5	5	Ages: 15 (1), 16 (4), 17 (2), 19 (2), 25 (1); 3 Aboriginal youth
Montreal	4	1	3	Ages: 18-22 (youth intermediaries)

4.2 Awareness of Hepatitis C

Health Issues for youth at risk

After introductions, the youth were asked about issues that concern them. Very few raised health issues, with sexually transmitted diseases and smoking being the only health issues that came up, and those only at one group. Concerns that cut across all groups related to their lack of money, problems in relationships and with family, and difficulties in school. Issues that came up at individual groups included difficulties with the law or other authority figures, work, lack of shelter and food, racism, drug use, government cut-backs, and general instability in their lives.

Youth who had personal experience with hepatitis C raised that as a concern at three of the groups. Other issues raised more than once included injuries, the cost of prescription medication and BSE (bovine spongiform encephalopathy or "Mad Cow Disease"). Concerns raised only once across all focus groups included frostbite, weight problems, monkeypox, violence, lack of sleep, trouble with teeth, and "boot rot", a fungal condition that occurs when feet are constantly damp.

Knowledge of hepatitis C

Awareness of hepatitis C varied substantially among the groups, with most participants in the Toronto and Whitehorse groups quite aware, and those in Halifax and Calgary far less so. Each group appeared to have at least one person who was quite knowledgeable on the subject, generally because that person had a friend or relative who had hepatitis C. About one-third of participants in Vancouver knew about HCV. In Whitehorse and Vancouver, educational programs about hepatitis C had recently been delivered in the schools the youth attended (alternative school in Vancouver, regular curriculum in Whitehorse).

In Montreal, the youth intermediaries were well aware of hepatitis C, and felt the youth they worked with were also aware of the disease, at least superficially. They felt youth they dealt with were better informed about HCV than the general population, and this stemmed from the fact that they recognized that they were at much greater risk of contracting it. Notwithstanding their recognition of the risk, many youth minimized their concerns about the disease and its potential impact on their lives. According to the youth intermediaries, even those who were HCV positive often downplayed its seriousness, particularly if they were not experiencing symptoms. Even when symptoms were present, they would attribute them to something else (lack of sleep, a bad cold, etc.), rather than seriously address their illness.

Prior to getting information about hepatitis C from the facilitator, focus group participants were asked what they knew about the virus. The following statements emerged. (Note: This provides an aggregate of information; many groups were not aware of much of this information. See Appendix E for site-specific data.)

• It is an infection of the liver.
• It is a viral infection.
• It is transmitted in the blood (through needles, razors, toothbrushes, piercings, tattoos).
• It can be spread through fighting, if open wounds exist on both parties.
• There is no vaccine against it (only for A & B).
• Symptoms: flu-like, nausea, fatigue. Sometimes people don't have symptoms.
• If you drink alcohol with hepatitis C, it makes you really sick.
• There is some form of treatment for it.

Many people compared hepatitis C to HIV, in terms of transmission and their concern over it, although most indicated that they were far more concerned about HIV.

Some also believed that:

• HCV can be spread to children, if you have it while pregnant;
• It is easily transmitted through sex with an infected person;
• It is difficult to catch;
• It may be airborne;
• It can live outside the body for an extended period of time (up to two weeks).

After the facilitator provided a brief overview of hepatitis C, youth were given the opportunity to ask questions. Most concerns focused on:

Methods of transmission
Although they were aware that blood was the transmitter, participants wondered how long the virus could remain alive outside the body, and whether coming into contact with standing blood through an open sore could transmit the infection.

Infection through snorting equipment
Only a few of the participants in the Toronto group knew that HCV can be transmitted through snorting equipment. This appeared to be compelling new information for many participants, with a number of them contending that it was not true.

Sexual transmission
Some participants believed that sex with an infected person created a high risk of infection.

Tattooing and piercing
Information regarding the importance of sterile equipment, ink, etc., in tattooing procedures also appeared to be compelling.

The availability of a vaccine
Many participants thought a vaccine was available, and that they had, in fact, been vaccinated. The facilitator clarified that they had most likely been vaccinated for hepatitis B, or possibly A, but that no vaccine exists for hepatitis C. This made some youth angry, feeling that as a marginalized population, their needs were not being met.

Generally, the youth in the groups felt that awareness of hepatitis C was quite low among their peers. As stated previously, the exception to this was in Montreal.

When asked what they might do to avoid infection with HCV, the youth said they would:

• not share needles or "rigs" (injection equipment);
• not shoot drugs;
• not share razors or toothbrushes;
• use condoms;
• follow the same steps as for HIV;
• "be more aware" about the risks of tattooing;
• watch where you walk (to avoid dirty needles);
• be careful who you have sex with;
• get tested for HCV regularly;
• talk about it to others.

A number of the youth were very candid in their discussions, calling others' bluffs when they made comments like, "Don't shoot up," or " Be careful who you have sex with." They pointed out that much depends on the state of mind and sobriety of the individual at the time, and that people often don't plan ahead regarding drug use or sexual activity. Some noted that they will probably have forgotten about the risks of hepatitis C in a few days.

4.3 Communicating the Hepatitis C Message

The best messenger

The youth were asked to whom they would talk and who they could trust regarding information on hepatitis C. All groups identified their friends as a trusted source of information. Others receiving widespread support as being knowledgeable and trusted sources include: youth counsellors (five of six groups); someone who has the disease (five of six groups); a health clinic with free, anonymous testing (three of six groups); parents or other relatives (three of six groups); doctors or nurses (three of six groups).

The youth intermediaries felt themselves very well placed to provide information, as they were intimately familiar with the lifestyles and issues of youth at risk, and had received information and training on hepatitis C, counselling and resources in the community.

Sources of information that received more than one mention are:

• an anonymous telephone health line, with trained professionals;
• Elders (sited by aboriginal participants); and,
• Reading material.

There was considerable discussion about the type of person who can be trusted, with general agreement that someone who "talks straight and knows their stuff" is acceptable. Criteria for trusted messengers included respect, tolerance, generosity, knowledge and familiarity with the person. Confidentiality was also cited as important, either from an individual or a health setting. A preachy approach was roundly panned. Knowledge based on experience, rather than education seemed more credible to these youth, including the peer intermediaries, although a combination of both was cited as ideal.

A number of youth were adamant that police officers are not good messengers. They voiced a considerable number of complaints about them and the way police treat youth on the street.

There was a lot of agreement between groups on the fact that youth such as themselves can tell who is "cool" and who is not, and that the qualities that comprise "cool" include an open, non-judgmental and respectful attitude, and open, clear language.

Formats

Print

Participants in the focus group were presented with a number of written materials - pamphlets, brochures and postcards - to review. Each participant was asked to pick one up and explain to the group what they liked and/or did not like about it.

The following elements emerged as being important in print materials:

Graphics
Bright colours, interesting graphics (particularly psychedelic, as per the FX materials), and arresting headlines attracted their attention. Graphics or colours were cited most often as the reason participants picked up a piece.

Size
The smaller items, such as the thumbnail brochures or postcards were picked up most frequently. Participants agreed they would be most likely to take away postcards and smaller sized brochures, and were therefore more likely to read them. Brochures that appear to be small but then fold out to be much larger (For example, Sex and Prevention, produced by Sexuality Education and Resource Centre [SERC] ) were criticized for being too long and trying to "trick" people into believing they were small pieces. Some of the very small brochures were also criticized for trying to pack in too much information and for being difficult to read.

With few exceptions, participants said they would be very unlikely to take a larger booklet or book. Those who said they would tended to be people who had a greater concern over their health, for example, pregnant girls. Despite the lack of interest in taking away larger materials, a number of participants believed that there was still significant value in such publications, to have as resources in places like shelters and drop-in centres where people could read them on-site.

Language
Simple, clear language was seen as most important to getting the message across. Catchy headlines were often cited as the reason people picked up a particular piece.

Format
The one sample that had a comic book format was very popular in all groups, particularly impressive considering it was only available in French, and most participants spoke only English.

Contact numbers
A number of participants noted how important it was to have a local contact number for further information.

Behaviour tended to reinforce the participants' contention that they would take the smaller materials. Many asked if they could keep some of the post-cards and mini-brochures, and the materials that disappeared over the course of the five focus groups were all small-format pieces.

Video

One video, Clean Points, Tips on Hepatitis C, was shown to most of the groups (Calgary did not have a VCR available), and a second, Filter, the Facts about Hepatitis C, was also shown only in Vancouver. It had very recently become available, and the facilitators, after viewing it, thought it would be interesting to have participants' views on both videos.

Although some groups found Clean Points interesting - even compelling - many fel t the individuals featured were too old and "decrepit" for youth to relate to. The group in Toronto, which appeared to include more active injection drug users than other groups, appreciated the video more. They felt it was truthful and accurately depicted "real" people, living through real issues. They said if it were shown at a drop-in centre, for example, they would watch it. Most however, felt the characters in the video needed to be younger to attract the attention of young people. They pointed out that if many of people who contract hepatitis C are young, a video on prevention should feature young people.

The Vancouver youth related much better to the Filter video, which featured two young people who had hepatitis C. They commented: "It could have been one of us in that video." They were far more attentive in watching the video, and in discussion afterwards, said they thought it was much better. The youth said it provided important information they had not been aware of, and appreciated the fact that it clearly showed both injection and tattooing equipment. They felt the messages were more specific and harder hitting, and that this made it more effective. For example, the video very clearly stated that the water shared among injection drug users in preparing their injections probably was the source of infection for many Vancouver drug users. This appeared to be new and compelling information for the group. Another message that captured their attention was that of the young woman saying she could not drink so much as one beer without feeling very ill. This clearly resonated with the group. Another element that garnered much discussion was the detailed description of sterile tattooing equipment, and what consumers should look for to ensure a safe tattoo experience. The youth who viewed the video said it presented them with a "big reality check."

Communications approaches

Participants in the focus groups were asked about their receptiveness to various types of communications approaches. They were presented with four options.

• Make sure that people that you trust and respect know about hepatitis C, and trust them to informally educate youth. These people could be youth themselves.
• Make information products, like brochures, pamphlets, videos, websites available at places where youth at-risk hang out, and hope they pick up on the information.
• Use both of these approaches: enlist the people you trust, and give them information they can turn the youth on to.
• Use other approaches like street theatre, puppet shows, comic books, etc.

Peer-to-peer approaches

Most participants expressed support for getting the messages out via a trusted intermediary, noting that they would be more likely to listen to someone their own age than to an older person. Some expressed support for the team approach, with an older qualified person partnering with one or more young people. Some participants pointed out that they remember information much better when they hear it from people they know and trust, compared to reading written material.

An approach supported in all focus groups, including youth intermediaries, is that of teams of youth spreading the word to their peers. Word of mouth was considered an extremely strong means of communication. Youth would be trained by those knowledgeable in the subject, and would spread out to various venues, as appropriate to their cities. Participants suggested this could be done anywhere that youth gather - concerts, drop-in centres, schools, etc. A more formal, workshop-type setting was also supported. Providing marginalized youth with employment in this way, tapping into their multiple skills while providing a public service was seen as a "win-win" situation for all involved.

Participants provided a wide variety of suggestions for how this could approach could be applied.

• Groups could go into the streets, handing out sandwiches, condoms and information.
• Youth could create posters, and hang them in high-traffic areas for other youth at risk, explaining their artwork and the message behind it.
• Teams could have matching t-shirts, with a preventative message and go to "party" venues - concerts, street festivals, raves, etc.
• Individuals could use a "Speaker's Corner" to spread the message.
• A "Hep C Squad" could visit schools to get the message to younger youth.
• Teams could create a video/television ads involving local youth, demonstrating a "day in the life of a young person with hepatitis C."
• Youth would create a magazine including information on both hepatitis C and HIV/AIDS.
• Youth, working with knowledgeable adults, could produce a CD, including writing the music and lyrics to original songs, creating the cover artwork, arranging for production, etc. The packaging would provide room to print the lyrics and other health messages, while the artwork and format would clearly be directed to youth.

Clearly, there was no lack of imagination, and there was considerable enthusiasm for the types of projects the youth "ambassadors" could develop to spread the prevention message. In most focus groups, the discussion generated a great deal of interest, with some individuals offering their names as potential youth intermediaries.

Mass Media Approaches

In addition to face-to-face contact, some participants felt a combination of tactics would be best, pointing out that the information needs to be "in people's faces." Specific approaches that were supported in most groups are:

• Bus ads (inside and out), bus shelters, bench advertising;
• Posters (with public washrooms cited twice as good locations);
• TV and radio advertising; and,
• Messages on various products: condom wrappers, beer cans, cigarette packages, rolling papers.
• One approach that received mixed response was an Internet site. Although this concept was supported in some groups, others felt it was not readily accessible to many youth at risk.

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