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6. Lessons Learned

Approximately two-thirds of the projects receiving funding in fiscal year 2000-2001 provided written reports on their activities and/or achievements. Some of these also supplied samples of their outputs. Nevertheless, the overall quality of project reporting was uneven in terms of clarity, completeness, level of detail, and care in preparation. For example, some reports were handwritten whereas others had been prepared with professional assistance (e.g., external evaluators). As well, some project reports reflected much more extensively on the projects' experience than others.

The following analysis cannot be said to reflect project experience as a whole, because of the variability in reporting, the absence of reports from a sizeable number of projects, and the fact that many initiatives were still in progress at year-end. Regrettably, these factors mean that some project accomplishments will be unsung and valuable learning experiences lost.

Many important issues, such as capacity-building, the determinants of health and the benefits of partnership have been examined in some detail in the preceding sections of this report. Studied with care these will yield a myriad of useful tips for future projects and pitfalls to avoid. This section takes a different approach. It is an attempt to discern, based on the reports received, what larger lessons communities may learn from year two, and how these lessons may be used to improve the focus and results of regional project funding.

Discussed under four main headings, the following lessons are all rooted in project experiences as reported from the field in 2000-2001:

• Territoriality
  is concerned with the need for priority populations to remain the paramount concern, and for organizations not to become deflected from their purpose by turf-related concerns.

• Peer involvement
  highlights the advantages and potential limitations of working with peers in community-based prevention, education and support initiatives.

• Attention to detail
  reflects on the importance of attending to seemingly small administrative and other details that could undermine project results, or even compromise the initiative.

• A whole-person approach
  discusses the need to maintain an integrated perspective when working with priority populations and shows how interventions that ignore people's wider circumstances can sometimes go awry.

a) Territoriality

Lesson:

Community groups mirror the wider society, with all its prejudices and power struggles. In our efforts to combat hepatitis C, we must strive to find common ground rather than focusing on our differences.

One of the Program's guiding principles is that everyone with hepatitis C should be treated equitably, regardless of how or when they contracted the virus.

The roll-up report for 1999-2000 referred to an emergent concern that the stigma perceived to be associated with HIV/AIDS might spill over to persons infected with hepatitis C. The report suggested that this fear needed to be addressed. Once again in 2000-2001 the same issue came to the fore. Two main areas of concern were highlighted.

The first was the reluctance of some hepatitis C-positive individuals to participate in groups including persons with HIV/AIDS. In the words of one project report, "some people would rather see HIV and HCV separated as soon as possible". From a practical standpoint, this attitude may prevent clients from having their hepatitis C-related needs met.

Second, some projects hinted at the existence of a " hierarchy" of distinction among hepatitis C-positive persons, based on the source of their infection (e.g., blood supply versus needle-sharing or other practices). One project report alluded to a "perceived persistent bias towards those who 'got' hepatitis C from injection drug use rather than through the blood supply", a bias that this report noted, "may influence the allocation of resources, and the establishment and implementation of priorities by individual organizations."

The perception of stigma did keep people from attending support group meetings in one project (which reported on the "unwillingness of persons other than those infected by the blood supply to come forward and reveal themselves by attending..."). Another event failed to attract persons infected through recreational drug use, possibly because "the domination of those attributing infection to the blood system ... inhibited others from attending".

As a result of these strains, rifts appear to be opening up between community groups whose common goal is to reduce the toll of hepatitis C. For example, one group reported that the "greatest barrier to implementing activities was the lack of willingness to coordinate efforts coming from another area organization funded to do hepatitis C work." That organization had expressed the "wish that the association of hepatitis C with HIV and IDU not be publicly alluded to". By acceding, the project group felt that it had reduced its ability to reach the broader community with hepatitis C messages, advertise its services, and respond to advocacy issues. At the same time, the challenging organization offered no services in the community and did not take part in the work of the community planning consortium. Some members of the local hepatitis C population were thus left virtually without support. The project report concluded that while a certain amount of compromise is appropriate in order to minimize conflict, "we have learned that our focus must be on ensuring the service is provided, not on who does it".

This problem is not insurmountable. Projects commonly face the challenge of appealing to different subgroups in the hepatitis C population. Furthermore, the attitude of "righteousness that attends those infected by the blood system" is not a new phenomenon, at least to the AIDS community. Still, its persistence does raise key questions. One project report wondered whether persons infected with hepatitis C alone would indeed be less inclined to seek out services from an "HIV-specific" group. According to this report, the following questions need to be answered: Are the two (modes of infection; i.e. blood vs injection drug users, or types of infection; i.e. HIV or hepatitis C virus) compatible within one support organization? And (if so), will people come forward in smaller communities and rural areas? The group concerned plans to canvass community views on these questions.

b) Peer Involvement

Lesson:

While working with peers has the potential to benefit all concerned, it won't "just happen". We need to find the formula for successful peer involvement, bearing in mind that the necessary ingredients may vary from community to community.

For community projects, viewing members of the client population as equal allies can be a fruitful strategy. Clients are the ones whose health is at stake, and their expertise is important to community service providers. Not only do they hold the keys to reaching people, understanding their cultures and ways, and building their trust, but as well they can share the workload and monitor project impacts on the front lines.

Throughout their reports, community groups noted the many benefits accruing from peer involvement, including:

• increased audience reach;
• greater trust in and credibility for the organizing group;
• a more reliable and accurate understanding of client realities and needs;
• the possibility of developing more authentic interventions;
• an ongoing ability to monitor the "pulse" of the client population;
• a greater comfort level among clients themselves; and
• better-quality feedback.

An entirely peer-driven youth initiative in Alberta found a more tangible reason to celebrate the use of a peer approach - "recruiting youth who were enthusiastic about this project resulted in lower spending on staff hours..."

When peers become involved they themselves also benefit. This is illustrated by a Vancouver initiative still under way at year-end. In order to reach youth outside the public school system (e.g., in correctional facilities, detoxification programs and employment/skills training programs), this project established a peer educators' bureau. Among the positive outcomes reported to date are a growth in peer workers' confidence and sense of effectiveness (springing from their experience as prevention educators) and an increased sense of control over their own sexual health. Through their involvement, these peer workers have not only expanded their skills, but as a result of being introduced to new concepts - for example, the determinants of health and how these are linked to HIV/AIDS and HCV - they have also enhanced their working knowledge of broader health issues. In another project in Manitoba, inner-city youth were recruited to produce and perform in a play and develop a video aimed at educating their peers. Given a voice to speak out in this way, the young workers reportedly experienced positive effects, including "a sense of importance" related to being the ones responsible for getting the message across to their peers. They also had opportunities to broaden their life experience - for example, by attending a theatre production and meeting real actors.

Some projects wished that they had involved client populations more fully, or sooner. One project, reviewing what could have been done differently, suggested that there should have been more input from lower-income groups. On the other hand, another project report suggests that there can be disadvantages in relying too heavily on non-paid staff. It stated that the project was slowed down because "all those involved in the chapter are volunteers." A number of projects also pointed to gaps between the ideal and the reality of client/community participation, noting that at times peer workers can be hard to recruit, challenging to work with, and easy to lose.

One Alberta project, although eager to involve peers through a "natural helpers group", found this difficult because of the small population from which helpers might be drawn, and their ever-changing life circumstances. Its report noted that whenever potential helpers (injection drug users) entered treatment programs, left the community, or were incarcerated or drawn into personal or family crisis, the pool of possible recruits shrank even further. A theatre project in Manitoba commented that it was "hard to hold a group of at risk youth together over a year-long process", noting that the group was challenging to work with in terms of discipline to conduct the work needed (e.g., concentrating, learning lines between rehearsals). It concluded: "These are the types of challenges that can arise when working with street people, drug users, people experiencing poverty".

A project to develop a comprehensive model for providing hepatitis C services to Calgary's homeless remarked in its report on the difficulty of recruiting hepatitis C peer trainees (for support work and identification of the barriers to testing, treatment and support). Another project report hinted that societal stigma might be at the root of peers' hesitancy to get involved, and two others questioned whether compensating peer workers might boost participation. However, another project report noted that when people's health is compromised, cash incentives may not be enough. In its words, "many clients want to volunteer, but they quickly find they lack the energy to continue."

Acknowledging that there will always be some clients who are too ill to volunteer, what are the critical ingredients of successful peer involvement? A Manitoba project may have found part of the answer. Noting that "the most successful aspect of the project was the peer advisory group who formed the heart of the project", the report began by outlining the contribution made by group members. They had "kept the project relevant, made content decisions, provided unique perspectives and information, and were motivated by the true desire to reduce harm" in the injection drug-using community. The report then unveiled the formula for that success: group members already had some formal experience working on the issues, as well as informal knowledge; the group rules were posted; roles and expectations were clear; participants were paid $20 for their involvement, provided with dinner, and compensated for child care and transportation; they acquired new knowledge/skills - not just about hepatitis C, but also about communication and the process of creating a pamphlet - and were able to use what they had learned. When the project was over, "they all believed they had contributed meaningfully and were proud of the product".

c) Attention to Detail

Lesson:

Careful preparation and attention to small tasks do not stall the process - they facilitate it.

Scattered throughout the project reports are references to so-called "administrative details." Although sometimes irksome, these can, if overlooked, undermine even the most brilliantly conceived initiative - as one or two projects found when they encountered problems after glossing over fundamental requirements. By bravely sharing their experiences, such groups can help other project organizers - present and prospective - to avoid some of the same traps.

Perhaps the most common regret was that of not having clearly established the roles and responsibilities of everyone involved from the outset. As one group noted, project goals, target areas, the committee's role, individual roles, and the responsibilities of the chair and project manager - including signing authority - should have been discussed and agreed before the project began.

Another project reported that the lines of authority had not been made clear to the project coordinator, who "did not know what was expected of her". Such basic building blocks, if improperly laid, can make it difficult to determine where the roots lie when problems arise later. In this example, the lack of clarity meant that two questions had to be asked when things started to go wrong: Were the project coordinator's skills and motivation adequate? Or, was the co-ordinator inadequately supervised?

One report, from a project that had collapsed, revealed the pitfalls of inadequate record-keeping. In this initiative "No minutes were kept of project team meetings, making it impossible to determine what really led to the breakdown of the project as originally conceived". The project organizers recommended that in future, "minutes of all committee, working group and/or management team meetings should be recorded, kept on file, and distributed to all appropriate parties." Further, all policies, procedures, terms of reference and instructions to staff should be kept on record.

It is all too easy to overlook the obvious. One project, having neglected to budget for the necessary travel, was unable to implement the activities it had planned for outlying communities. Another project in Ontario noted that "geographical distances made travel difficult in winter".

It can be tempting to plunge headlong into a project, forgetting the preliminary details. However, as one group noted in its report, it is important to spend time laying the groundwork with other potential collaborators. This particular group introduced its project to organizations by means of introductory telephone calls and e-mails before attempting to set up meetings with them, thereby respecting their need for advance notice and adequate preliminary information. The project organizers felt that this seemingly small activity was so important that it was worth identifying under the heading "What Worked".

Two other projects came to regret having started without adequate preparation. An AIDS-related group felt that, with hindsight, it should have spent more time familiarizing staff with hepatitis C issues. Another project group found that "longer planning" was required in order to carry out a needs assessment and do capacity-building. In a similar vein, a third group expressed surprise at the amount of time consumed by project "set-up".

Because this had not been foreseen, the impression had been given that the project was not making any progress.

Some projects discovered what may seem elementary - namely, that communities often do not like it when " outsiders" coordinate their projects. However, recruiting contact persons and/or staff locally may not be enough. As other projects observed, in order to gain trust and confidence project workers must be known within the community and/or have had prior involvement with it.

d) A Whole-Person Approach

Lesson:

When designing and implementing the various facets of a project, it is important not to lose sight of the whole person. Overlooking critical contextual factors and/or client "life circumstances" may imperil the success of the initiative.

On many occasions, disappointing results led project organizers to reflect on whether they had adopted too narrow an approach. Given the known associations between hepatitis C and socio-cultural factors, a broad perspective - one that looks not just at people's behaviours but their life situations as a whole - can yield important clues as to what is likely to work and what is not.

For example, when women inmates failed to turn up for the educational events run by one project, organizers were forced to recognize that "[incarcerated] women, who are required to spend all day in programs, are not willing to spend evenings attending another program". Inner-city projects provided additional illustrations: in one instance, homeless hepatitis C-infected persons could not access government social assistance, since the system required that applicants have a telephone and a mailing address. In another project, organizers planning to promote hepatitis C testing among homeless Francophones discovered that in order to be tested people first need identification and health insurance cards. This formal type of documentation is something that most transient populations do not have. In this case, the project workers concentrated on building relationships of trust with their clients through helping them complete the forms needed to obtain identification to access various types of assistance. They reasoned that in the long run this would open the way to improved health for their clients, and enable them to learn more about hepatitis C.

Another project to educate youth about hepatitis C risks found that providing them with the information was not enough. These youth had no interest in health issues that might affect them at some future date. Indeed, they hardly cared to know what else might be wrong with them when they already had so many physical, psychological and social problems. This was a rational response, given the reality of their lives. The lack of housing and other basic necessities in the lives of these youths likely contributed to their "survival" focus.

Further illustrating the need for a more holistic approach was another project involving street youth. According to the project report, these youth also found it difficult to look ahead to a future time when they might be ill. Some actually said they did not even know if they would be alive in a few years' time. This contrasts sharply with the sense of "invulnerability" and "immortality" often found in middle-class youth. It would appear that their homelessness, rather than their age, determined their response. In yet another project in which street youth showed negative attitudes to health issues, project organizers came to understand that their lives were "too precarious, unstable and lacking in social structure and support for them to be concerned with physical health issues."

The phrase 'whole-person approach' has an attractive, logical ring to it, but as one project report acknowledged, many stakeholders view it as "good in theory, but not in practice". Even so, one group reportedly managed to "gain trust and relevancy in the population" by "approaching the work with attention to the whole person". This meant helping clients in "their daily struggle for survival", working with them on their transportation, housing and addiction issues, and facilitating access to medical treatment. The project report suggested that, at least from the perspective of this client population, workers who cannot be of immediate practical help are considered virtually useless.

No program can change people unless it is accessible to them. In Vancouver, a four-month bus strike led to a large drop-off in participation in a peer education project. As the report observed, "youth do not have access to cab fare, nor other vehicles - it was already a challenge to get groceries and medications, far less attending an evening discussion group, despite their expressed wish to do so".

Project planners and workers need to be familiar with factors in their clients' lives that affect their ability to participate. The Vancouver project report noted, for example, that client attendance traditionally dropped off in the summer months because of the warmer weather, seasonal job opportunities, and the vacation schedules of the various professionals providing support services.

Even when clients' life situations have been taken into consideration, success is not guaranteed. Groups working with street populations point to the fragility of any apparent project achievements, given their reliance on "relationships and connections [that are] hard to maintain with persons who have so few attachments in their lives." Sometimes the truth is that "the totality of [clients'] conditions of life cannot easily be improved".

One funded project suggested that for youth to be healthy, they need hope. From the service providers' side, this means "supporting positive choices, by providing positive alternatives for recreation, employment and education." Another project urged the appropriate levels of government to focus more on addressing people's basic housing, health, employment, and education/training needs. A third project suggested that when clients are experiencing problems in so many areas of their lives, the best way to have a positive effect on their health is to take a "whole-person approach" to all dealings with them - be it providing formal or informal assistance, support or follow-up services and whether the issue is addiction, shelter, nutrition, violence or the justice system.

It can be tempting for health and social service workers to assume that everyone with a problem needs outside help. One regional project illustrated the importance of understanding the community culture, which provides the backdrop to people's lives and informs their actions and interactions. In this instance, project organizers had overestimated the numbers potentially interested in joining a support group. As the report noted: "In remote communities, such as those targeted in this project, many learn to cope on their own, with family help, without seeking group support. They prefer to remain private." A local priority needs assessment would likely have revealed this.

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