Cover Image
close this bookComfort and Hope: Six Case Studies on Mobilizing Family and Community Care for and by People with HIV/AIDS (Best Practice - Case Study) (UNAIDS, 1999, 98 p.)
View the document(introduction...)
View the documentIntroduction
View the documentProject Hope, Brazil
View the documentDiocese of Kitui HIV/AIDS Programme, Kenya
View the documentDrug user programme, Ikhlas Community Centre, Pink Triangle, Malaysia
View the documentTateni Home Care Services, South Africa
View the documentSanpatong Home-based Care Project, Thailand
View the documentChirumhanzu Home-based Care Project, Zimbabwe


The case studies included in this collection stem from a UNAIDS presentation entitled Home and Community Care: It Works! It documented the experiences and lessons learned by six community-level projects from Africa, Asia, and Latin America. It was given at the Third International Conference on Home and Community Care for People with HIV/AIDS. Subsequently it was decided to publish them.

All the projects were chosen because they reflected most or all of what UNAIDS considers key elements of home and community care, as well as most of UNAIDS Best Practice criteria (discussed below).

All of the presenters were “hands-on” care givers from the community organizations described in the case studies. They were:

· Etta Dendere of Chirumhanzu Home-based Care Project, Zimbabwe

· Janet Frohlich of Tateni Home Care Services, South Africa

· Elizabeth Kyalo of the Diocese of Kitui HIV/AIDS Programme, Kenya

· Americo Nuñes Neto of Projeto Esperança (Project Hope), Brazil

· Samboon Suprasert of Sanpatong Home-based Care Project, Thailand

· Yee Khim Chong of Ikhlas community centre, Pink Triangle, Malaysia.

As they each took their turn addressing the conference, the presenters acknowledged or dedicated their talks to the clients in their respective communities. As one presenter put it, the people living with HIV/AIDS and the members of the community who care for them (family members, friends and volunteers) are both “the practical reason and the inspiration for our work”.

Shared principles and approaches

Prior to the conference in Amsterdam, the six had spent two days in Geneva at UNAIDS headquarters preparing their presentations in consultation with UNAIDS staff. As they compared the various projects with their diverse approaches and environments, the presenters found themselves agreeing on a group of elements they considered key in their work:

· a shared value of participation of affected and infected persons;

· a shared vision of participation and involvement of family and community;

· action aimed at an improved quality of life for infected and affected persons, within their context (i.e., improvement judged according to their perceptions and feelings);

· systems and mechanisms for maintaining momentum (i.e., for ensuring the project’s sustainability); and

· synergy between community members, government departments or agencies, and the facilitating nongovernmental organization (NGO) or community-based organization.

UNAIDS’s Best Practice criteria

Community mobilization against HIV/AIDS is being done successfully all over the world. The activities carried out in community projects are as diverse as the peoples and cultures that make up these communities. Some are entirely “home-grown” and self-sufficient, while others have benefited from external advice and funding. Some are based in religious centres, others in medical institutions, and still others in neighbourhood meeting places - including people’s kitchens. Many concentrate on public education, others on providing care, and still others on prevention or other goals.

With such geographical and organizational diversity, how can we know if a community mobilization project is “best practice” or not? This is an important question in the expanded response to HIV/AIDS. In order to answer the question, it is first important to understand what UNAIDS means by the term.

One of the main roles of UNAIDS is to “identify, develop, and be a major source of international best practice, that is, to identify effective and ethical policies and strategies for prevention and care, and promote and support relevant research to develop new tools and approaches to HIV/AIDS.” This role is best understood as being part of UNAIDS’s overall mission of “leading and catalysing an expanded response to the epidemic to:

· improve prevention and care;

· reduce people’s vulnerability to HIV/AIDS; and

· alleviate the epidemic’s devastating social and economic impact.”

Once an initiative is identified as doing any or all of the above well, the following are used as “core criteria” for best practice: relevance, efficiency, effectiveness, sustainability, and ethical soundness. (A brief assessment of each project against these criteria is included at the end of each chapter.)

Applying best practice to a complex field

Best practice” is a difficult concept to apply to a field as complex - or perhaps more accurately - as human as community mobilization. Analysis of community mobilization experiences can only be done when the specifics of each community are understood. These specifics include:

· traditional culture and its adaptation or resistance to outside influences;

· formal and informal power structures;

· local weather and geography;

· important personalities and interactions between these personalities;

· economy and infrastructure;

· educational levels;

and a host of other factors. Few of these are measurable or controllable (in rigorous research terms of social or medical science).

Data collection is also a challenge. Record-keeping in community-level organizations is frequently rudimentary and inconsistent, quantitative data are partially or entirely unavailable, and sample sizes are, in any case, too small or ill-defined to give reliable results. Even when changes can be measured, it is often difficult to link them to the practice being evaluated. And replicating the result in another community (if a “comparable” community can be found!) may be impossible, not only for methodological reasons but for practical ones such as finding a willing community partner.

So how do we know what is “best”?

In community mobilization, we rarely know what is best - if by “best” we mean “most relevant, most effective, most efficient, most ethical, and most sustainable, all the time and in all places”. This is particularly true if the rigorous measures of quantitative analysis and the controls of research design are demanded.

On the other hand, we can often say with some confidence that a practice is “good” - certainly in a particular place - and possibly in many other places. Sometimes we can go so far as to judge that one practice is “better” than another, again, in a particular place and possibly in many other places.

For judging best practice in community mobilization projects, the general criteria of relevance, efficiency, effectiveness, sustainability, and ethical soundness can be clarified by considering them against a set of characteristics that mobilized communities either exhibit or strive for. These characteristics were discussed in the first of UNAIDS’s Technical Updates on “Community Mobilization and AIDS”. As described in that document, UNAIDS understands a “mobilized community” to exhibit most or all of the following characteristics:

· members are aware - in a detailed and realistic way - of their individual and collective vulnerability to HIV/AIDS;

· members are motivated to do something about this vulnerability;

· members have practical knowledge of the different options they can take to reduce their vulnerability;

· members take action within their capability, applying their own strengths and investing their own resources - including money, labour, materials or whatever else they have to contribute;

· members participate in decision-making on what actions to take, evaluate the results, and take responsibility for both success and failure; and

· the community seeks outside assistance and cooperation when needed.

Second, the Technical Update states some of the major principles that community mobilization projects should adhere to. These principles can be seen at work in projects that:

· uphold the rights and dignity of people infected with and affected by HIV/AIDS;

· ensure active participation by as broad and representative a group of community members as possible;

· provide for equal partnership and mutual respect between the community and external facilitators;

· build capacity and ensure sustainability;

· build on the realities of living with HIV and AIDS while maintaining hope based on community collective action; and

· maximize use of community resources while identifying and using additional external resources as needed.

Diversity and commonalities

To return to the six case studies presented here: although they as diverse in origins and activities as in geographical location, a number of common points can be seen. It should be noted that these common points are not common to all but to at least two of the six. Again, this simply illustrates our point that, in so human a field as community mobilization, many different approaches can and do work - not necessarily for everyone all the time, but frequently enough that they are worth considering when creating or modifying one’s own project.

Some of the points shared by two or more of the projects are:

· Spiritual motivation or guidance. Three of the projects - Projeto Esperança in Brazil, Kenya’s Kitui Project, and Zimbabwe’s Chirumhanzu - began with, or were greatly aided by, the initiative of Catholic clergy. In Brazil, the project was started by a nun, and support from the local bishop was crucial in finding a building for the group to work out of. In the two African experiences, staff at mission hospitals provided the impetus and expertise that permitted the projects to start. The spiritual connection is also very strong in the Thai project. There, Buddhist monks and teachings play an important role in helping persons infected with HIV/AIDS “live positively”, and in encouraging families members and others in caring for them. They have also helped greatly in reducing stigmatization of PLWHAs in general society.

· Participation of a well-known or particularly well-connected individual. In many places, it is important for someone with a great deal of local respect to publicly support or participate in a project if it is to achieve success. Such was the case in South Africa’s Tateni Home-based Care Services, where the participation of the well-known retired nurse Mama Khoza was important in gathering a successful team. Similarly, Thailand’s Sanpatong Home-based Care Project benefited greatly from the wide professional connections and long experience of organizer Samboon Suprasert.

· Importance of getting moral support of local leaders and authorities. As mentioned above, a crucial “helping hand” was provided to Projeto Esperanca in Brazil by the moral and material support of the local bishop. In very different contexts, but illustrating the same principle, the projects in Thailand and Kenya emphasize the importance of careful relationship-building with village chiefs, without whose support few local people would be prepared to openly seek services. In Malaysia, an essential part of the success of Ikhlas community centre’s drug user programme was to reach an agreement with local police, since the members of IDU community are by definition engaged in an illegal activity.

· Focus on marginalized groups: in Brazil and Malaysia the project focus reflected the local course of the epidemic which, in both cases, was most prevalent among specific groups of people. In Brazil, Projeto Esperanca’s earliest clients were gay males and intravenous drug users (IDUs). In Malaysia, Ikhlas community centre’s drug user programme was the result of one marginalized group with high prevalence (gay males) reaching out to an even more marginalized group, IDUs. In contrast, the projects in Thailand and Africa took a more general focus on a geographical area rather than a particular sub-community, since the epidemic has a more general incidence in the areas concerned.

· Top-down compared with community-initiated approaches: three of the projects reflected a top-down start, where an existing organization or professionals from a particular institution initiated the project. In Zimbabwe and Kenya, the initiating institutions were mission hospitals, while in Thailand the organizers were professionals from the local Red Cross Centre, Chiang Mai University and public health staff. In contrast, the Brazilian and Malaysian and South African projects were primarily organized based on the participation of community members (this has been called by one community organizer a “bubble-up” approach, rather than the more standard “bottom-up” term).

The South African example of Tateni represents a sort of mix, with the impetus coming from retired nurses who quickly involved both community members and the provincial health authorities.

In conclusion

UNAIDS is very pleased to present these, the first in a series of case studies of community-based projects that provide care and prevention to people where they live, work, and play. We hope that they will provide food for thought to other existing projects, and useful advice for people who are planning to create their own projects. In addition, we hope these case studies will be useful to policy-makers and public health officials. We believe the experiences described here show how much valuable work can be accomplished by communities determined to look after people living with HIV/AIDS, and to support the family members and others who care for them.