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8. Future Directions

Information on future plans, needs and directions was noticeably scarce in the reports as a whole, possibly because a large number of the projects were still in progress at report time. Even so, not all of the completed projects identified well-developed future plans. The following observations are drawn from the reports that did attempt to look forward, whether in specific or general terms, and should be considered in conjunction with Section 6. ("Lessons Learned").

8.1 Rising Demand for Prevention Education

Many projects made a plea for the allocation of more resources to hepatitis C preventive education. Using strong terminology ("overwhelming demand", " huge lack of awareness") they called attention to what they saw as a widespread lack of knowledge about hepatitis C in populations at risk, and to the consequent need for ongoing hepatitis C awareness/prevention programs on the street, in correctional institutions and ethno cultural communities/agencies, and among high-school and university students. One project noted that many school teachers and administrative staff are themselves misinformed about hepatitis C and HIV/AIDS.

In its report, a Quebec project (a training initiative) noted that there were waiting lists for worker education in several parts of the province. Another report noted that although an estimated 10,000 Manitobans were hepatitis C-positive, only 3,500 had so far been identified. By this count, 6,500 infected persons were still to be located and tested (often in remote areas, with implications for resource allocations). This signals a large hidden problem, not confined to one part of the country, in which those who are infected but unaware of it could put at risk others who themselves may lack the information they need to protect themselves. Moreover, many agencies responsible for education are also attempting to provide services and support, intensifying the pressure on their resources. Calling for additional support services, especially for co-infected persons, one project report warned: "There are simply not enough community agencies funded to provide hepatitis C services and education, especially for inner-city populations".

8.2 Support and follow-up for clients and families

Two of the program's guiding principles are relevant here. They testify to the importance, first, of meeting the needs and priorities of people who have hepatitis C, those at risk of becoming infected and others closely affected (such as family and caregivers) and second, of finding practical, immediate ways of making people's lives better. As more cases of hepatitis C are identified, such needs will only increase.

Some project reports urged that more support be made available to persons testing positive for hepatitis C, especially inner-city youth, for whom follow-up and treatment are major concerns. Project experience in the second funding year suggests that it may be unrealistic to expect support groups, which are a key mechanism for helping the newly diagnosed and their social networks, to become immediately self-sustaining. One project recommended that community groups and their workers remain in close contact with fledgling support groups, providing periodic help with organizational and development issues. An assortment of other strategies were proposed, including: connecting persons who wished to avoid public identification with persons in similar situations; expanding the language capabilities of support group facilitators and telephone networks; continually updating the information available to support groups, enabling them to stay in touch with new developments; and training more volunteers to provide support and follow-up services.

Reports highlighted the need for increased resources for psycho-social support and education services (to deal with clients' anger, isolation and confidentiality concerns), including one-on-one counselling. The latter approach seemed to work well with some individuals as a first step, prior to group work. Bearing this out, several clients who had received intensive one-on-one support ended up volunteering time to the project, and others were even able to return to paid employment.

Project reports suggested various means of enhancing one-on-one support, from acquiring a pager for round-the-clock individual support to including relevant counselling expertise on the project team.

8.3 Physician Education

In the words of one project report, a key to future success will be "vigilance towards building inroads with the medical community". Notwithstanding their key position as gatekeepers, as one project group suggested" family physicians need to be more educated about hepatitis in all its forms (A, B and C)". It was surmised that additional information would facilitate physician¹⁰ involvement in hepatitis C prevention and education efforts. Yet, except for one project in Atlantic Canada that described its Continuing Medical Education Seminar as a "maj or accomplishment", project groups found it difficult to attract medical professionals to their educational sessions, even though special efforts were made to accommodate physician needs. To try to remedy this situation, one group noted that it had "begun engaging the medical community in a more direct manner", by calling doctors directly to describe their project objectives and activities. Another project report recommended that a specific plan be developed to gain physician collaboration by organizing a specially tailored seminar.

8.4 Training for Corrections Personnel

While some projects established productive relations with corrections officials, many others pointed to the need for corrections staff to be better educated about hepatitis C. There were also specific suggestions aimed at increasing the role of corrections personnel in prevention and education. For example, one group recommended that the health/safety staff of correctional institutions should be included in the local hepatitis C network, and another group proposed greater ongoing co-operation with corrections staff in educating inmates about hepatitis C.

Some particularly disheartening experiences were reported by another group which undertook its project in a detention centre. Certain prison guards and staff had openly disparaged the project and refused to participate. In fact, these staff members had claimed that far from helping, the project activities were contributing to disorder in the establishment. In its report, the project group suggested that considerable work would be needed with corrections staff to remedy these types of educational and attitudinal deficits. Any such effort should take into account that (as this report commented) corrections personnel may feel caught between their "harsh" role as enforcers of order and discipline, and the more caring role of helping inmates protect their health.

8.5 Diversifying Approaches

In their information-gathering efforts (before commencing their projects) groups demonstrated a clear appreciation of the need to tailor their activities to audience needs. As mentioned earlier, a wide variety of forums/settings and approaches were used for consulting different groups, with marked success in many instances.

Project groups generally acknowledged that no one publication or tool can meet the needs of everyone in a community. In their reports, they emphasized that resources must seek to reflect clients' different needs and circumstances, varying in content, format and/or emphasis according to the clientele's cultural background, socio-economic status and/or other characteristics.

Audience diversity also implies a need for more varied approaches to service delivery and communication channels. Project reports reflected on the importance of ensuring that resources actually reached their audiences as intended. Many possible dissemination channels were identified, including public health nurses, community and conference presentations (possibly on a cost-recovery basis), and articles in publications read by service providers and other priority groups. One project report commented that people in the middle classes can sometimes be more difficult to access than members of traditionally hard to reach groups, since the former are less likely to belong to effective hepatitis C networks (as do street people, for example).

Broadening the partnerships and networks involved in project planning and delivery was identified as a good way of addressing client diversity. Many project reports also pointed to the need to further develop/expand hepatitis C networks in rural and geographically remote communities.

8.6 Determining the Effectiveness of Interventions

One of the Program's guiding principles highlights the need to track results and performance, in order to continue learning and improving. To achieve this, project groups must be able to assess the effectiveness of their initiatives (a skill implied in the term "enhancing community capacity"). With this in mind, the Program devoted considerable effort in the first two funding years to developing simple, realistic approaches to evaluating project success - approaches with the potential to yield useful information without unduly burdening project staff. It should be noted that most year two projects had not yet integrated the relevant evaluation tools into their reporting processes.

Project groups faced many other evaluation challenges. For example, although some of the results they achieved were quite tangible (e.g., outputs such as training sessions, pamphlets, plays, etc), the effectiveness of these outputs may remain in question. Do they actually work? And, if they appear to work, is the result necessarily attributable to the particular output? When many influences are at play - for example, press articles, radio call-in shows, friends sharing knowledge - is there any valid basis for attributing positive results solely to project activities? At best, the project is but one of many factors, known and unknown, working in concert to affect the client population. Furthermore, meaningful results may only be observable over time. Succumbing to pressure to wrap things up quickly, project groups can be tempted to make definitive claims/statements too early on.

On occasion, a project group may need to re-articulate its objectives as the initiative unfolds - perhaps conditions have shifted or the initial goals/objectives were simply too ambitious. (A three-month, $5,000 project is unlikely to result in major changes in hepatitis C incidence rates in a large city.) While learning on the job is important and valuable, it can present challenges (since revised goals and objectives call for revised evaluation plans).

Although only a few groups were in a position to submit formal evaluation reports, several commented on evaluation issues. For example, there were those who called for a greater focus on evaluation, including a more systematic collection of quantitative and qualitative data for evaluation purposes. One project report pointed to the need for yet further follow-up with clients, to determine whether an intervention had made any long-term difference in their health practices. However, it noted that for a "rigorous regional evaluation" to make sense, at least three years of secure project funding would be needed. This would allow interventions to build progressively on each other. Still another project planned to survey the extent to which the information in its resource had actually been used by readers - i.e., had their initially positive reactions to the information translated into behaviour change? This is an important and necessary question to ask. Moreover, it needs to be asked of clients as well as workers who may have attended training or received tools, such as manuals, to help them conduct preventive or educational interventions.

In one project, trainees (street workers) who were questioned about the impacts of their training identified several areas in which they had taken follow-up action (testing, training, vaccination against other forms of hepatitis, research, communication and referrals). In another initiative, more than one-third of the clients attending a presentation said they planned to go for hepatitis C testing as a result of what they had learned, and one-half intended to join a support group.

Some project groups stressed the long-term nature of the challenge of achieving changes in client behaviours and attitudes, especially among youth. One project report commented that even when youth know " the facts", getting the information to "sink in to the point where it influences their behaviour" can be a "lengthy and arduous" process. It concluded: "T he information needs to be repeated many times before it impacts on their actions."

8.7 Sustainability

The Program's guiding principles emphasize the importance of undertaking initiatives that have staying power. Groups were expressly invited to comment on the potential sustainability of their projects. However, only a few did so. This is not surprising since most of the initiatives were still in their early stages. (The Hepatitis C Prevention, Support and Research Program itself was not much more than two years old at the time.)

Among those groups that did comment, some identified volunteers as the way to the future. One organization with a national profile saw the recruitment of volunteer program coordinators in three locations as the answer. With such coordinators in place, community knowledge and understanding of hepatitis C would grow and more gateways to information would open up locally. In time this might lead to the emergence of new volunteer chapters. Another group committed itself to developing stronger fundraising strategies to aid with expansion and sustainability.

The "great community success" of its theatre project inspired one group and its Board members to pledge their continued involvement once funding ended. They undertook to identify and generate whatever additional financial, community and personal resources might be needed. Another group promised to make its demonstration project materials available as a template to any interested group. If national interest/sponsorship from larger agencies and/or governments were not forthcoming, this group would "attempt to find a way to continue the project, by begging if necessary".

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