|Comfort 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.)|
Projeto Esperande SMiguel Paulista, Brazil
HIV/AIDS in Brazil
Brazil has the fourth highest reported number of AIDS cases in the world, with 116 389 cases of AIDS reported by the end of 1997. Over two-thirds of these cases have been reported in the industrialized southeastern portion of the country.
About half of cases to date have been found among homosexual and bisexual men. At the same time, the male-to-female ratio of AIDS cases has fallen from 9:1 in 1987 to the current 3:1.
In 1996, the Brazilian government passed a law to provide AIDS patients with free combination therapy and other medication, with poor and hospitalized patients given priority. This followed several lawsuits in which Brazilian courts ruled the government should pay for the treatment of people living with HIV/AIDS.
The projects first centre in SPaolos Eastern Zone was provided rent-free with the help of the local bishop.
Facts about Brazil
Total population (1995):
161 790 000
Annual population growth rate:
Infant mortality rate
(per 1 000 live births):
Life expectancy (years):
Per capita GNP (US$):
Surface area (km2):
8 511 965
Eastern half of South
America bordering French
Guiana, Surinam, Guyana,
Venezuela on the north;
Colombia, Peru, Bolivia,
on the west;
Uruguay on the south
26 states, 1 federal district
Hand in hand with life - Project Hopes motto
In 1988, Sister Gabriela OConnor began to work on the problem of AIDS in Eastern Zone II of Brazils largest city, SPaulo. The local bishop, Dom Angelico Sandalo Bernadino, gave his support to her work and provided a small building in the working-class neighbourhood of SMiguel, which still functions as one of the projects centres.
Following a period of information-gathering on the HIV/AIDS situation, Sister Gabriela had made a large number of personal contacts in the area and brought together a group of volunteers. These volunteers were already well organized and making house visits to people living with HIV/AIDS and their families by the time the project was legally constituted in 1991. Three years later, two new centres were formed in Guaianases and Vila Esperanwith the support of Brazils National Programme on STD/AIDS.
Project Hope was the first NGO in SPaulo to provide home care. Their initiative has been acknowledged as an important factor in sensitizing government health authorities to the feasibility of home care, and changing the authorities original scepticism of this approach to AIDS care.
Goals and principles
From the beginning, the goal of Project Hope has been to improve the quality of life of people living with HIV/AIDS by:
· changing the behaviours and attitudes of people living with HIV/AIDS, and
· involving the community.
The motto, hand in hand with life, expresses Project Hopes philosophy of solidarity and positive living, which informs everything it does. In addition, the project bases its home-care work on the following principles:
· the ideal environment and best therapy for a person infected with the virus is to be with his or family;
· families should be helped to accept and face up to the reality of living with HIV/AIDS; and
· infected individuals and their families should be helped to demand and fight for their rights as citizens.
Working with HIV/AIDS in a poor urban area
SMiguel is home to about 103 000 people, and covers an area of about 7.5 square kilometres. Most of the inhabitants are members of the working class, and many live in poverty.
While statistics for SMiguel itself are not available, the epidemiological profile for the state of SPaulo may give a rough idea of patterns of HIV/AIDS in SMiguel. As of December 1997, the state of SPaulo reported 65 350 cases of AIDS. Three-quarters of these cases are men. Sexual transmission accounts for just under half of all cases, while almost a third are the result of injecting drug use. Mother-to-child transmission accounted for just under 3% of cases.
Among the 28 417 reported cases of sexual transmission, the official statistics attribute 39% to homosexual exposure, 46% to heterosexual exposure, and the remainder to bisexual exposure. To date, over 40 743 000 people in the state of SPaulo have died of AIDS.
Currently, Project Hope provides services to approximately 480 people who are living with HIV/AIDS. Of these, approximately 10% are seriously ill while 30% are asymptomatic, with the rest showing some symptoms of the virus. At a recent count of people being served, there were 212 men, 189 women, and 68 children. In addition, the project was helping 94 orphans through its godparenting programme.
Major elements of the project
Project Hope is structured around four programme areas:
· Health programmes, including support and orientation for people living with HIV/AIDS and their families, nursing care, occupational therapy, and mutual help groups for emotional and psychological support. Two professional nurses on staff provide care both at the projects centres or in patients homes.
· Social programmes, including a Campaign for Orphans.
· Educational programmes, including training of volunteers, production of educational material, and public talks aimed at specific groups such as students, young people and housewives.
· Mobilizing financial support, including fundraising from local donors and from national and international agencies.
Within these programmes, several activities can be further detailed as major elements of the project.
An average of 183 new cases are taken on by the project every year. Initial contact with the person living with HIV/AIDS is made in several ways, most frequently through the initiative of the person or his or her family. Some introductions are arranged by the social services unit of the local hospital.
The first home visit is generally aimed at collecting information. It is carried out by a nurse accompanied by a volunteer. The visit begins with learning about the background of the person with HIV/AIDS, and is followed by evaluating his or her clinical condition. Finally, the social and economic situation of the person is discussed in order to make an assessment of needs.
Home visits by Project Hope volunteers to persons living with HIV/AIDS and their families are an important part of the projects work.
Whether there are follow-up visits depends on the decision of the person with HIV/AIDS. Every effort is made to establish a relationship of trust and friendship during the visits, and there is strict observance of the persons right to privacy. Between first visits and follow-ups, approximately 360 home visits are made per month. In approximately 90% of the cases attended by Project Hope, the families undertake to look after the person living with HIV/AIDS.
An important job is carried out by paid staff who are known as multiplying agents. These are young people (average age is 15 to 20) whose job is to promote awareness of HIV/AIDS and of the ways that individuals can prevent infection by or transmission of the virus. Examples include role-playing of how the condom use can be negotiated within a couple.
Services of volunteers
Project Hope could not do its job without the voluntary contribution of time by a variety of different people. They include:
· 74 volunteers who work daily or weekly in the health programmes;
· 97 godmothers and godfathers who help with orphaned children; and
· 40 - 50 people who help from time to time with particular events such as fundraising bingos, raffles or bazaars.
The volunteers represent a cross-section of the Eastern Regions population. The youngest to date is 18 years old, while the oldest is over 70. Fewer than 5% of volunteers have attended university, though 40% have finished secondary school. The majority are women. A variety of religions are represented in the group. Many are persons who have received services from the project.
Recruitment and training
Volunteers are recruited in various ways, including campaigns on community radio, articles in local newspapers, contacts with the neighbourhood association, and word of mouth. Each candidate is interviewed to find out their personal history, why they got in touch with the project, and what their expectations are. At the same time, the interviewers describe the project and explain its objectives.
If both sides are still interested, the volunteer enters an orientation period, learning in greater detail about Project Hopes activities and philosophy. The volunteer is free to choose a programme area to work in, based on this orientation. If his or her choice is to work in the health programme, then the volunteer begins to accompany staff and more experienced volunteers on home visits. During these visits, the new volunteer acts only as an observer, and learns that everything divulged during the visit is confidential.
This period of learning-by-experience lasts two months. If all goes well, the volunteer receives formal training on:
· HIV and sexually transmitted diseases (STDs);
· medicines related to HIV/AIDS and STDs;
· the role of volunteers in home care; and
· the benefits of home care for people with HIV/AIDS.
Only then is the candidate considered a full-fledged volunteer who is authorized to do home visits alone.
Keeping morale and motivation high
Americo NuNeto is a long-time member of Project Hope. He says:
Ive been HIV-positive for seven years now. I came into Project Hope as a client for their services in 1990. It was a good thing for me, as I really needed the support and also something to re-build my life around. After a while, I became a volunteer in the project and an activist in the struggle for the rights of people with HIV/AIDS. Today Im vice-president of the project.
In my work of coordinating activities, I have to keep in mind the needs of the group. Our work can be very hard on people emotionally, so maintaining balance and harmony is extremely important in motivating our volunteers and staff. You cant just hope for that to happen, you need mechanisms for the organization to follow. We have a variety of these mechanisms.
One is simply good, consistent supervision. I know that sounds obvious, but you have to think about it to do it well, especially when everyone is so busy. Just telling people what to do and leaving them to it doesnt work - not just because you need to monitor the quality of what they do, but because they need the support and personal communication with someone knowledgeable. As well, our supervision of volunteers isnt just watching what they do: it includes updating them on what the project is doing, and ongoing training.
In formal terms, we schedule weekly meetings where we evaluate progress on individual cases and discuss what the clients needs are - and the needs of the volunteer, which as a coordinator I always have to keep thinking about. But we also do a lot of group reflection on issues that come up, especially concerns of the volunteers. Being included in decision-making and having your ideas listened to is a great motivator for a volunteer. It certainly was for me.
Another important point: even if you cant pay people for the work they do, you can be creative about compensating them in one way or another. Project Hope organizes things like games, group recreation, trips together - those are obvious, and people like them and they dont cost much. And they encourage friendships within the group, which is very important. We also can provide public transport passes so people can get around easily and cheaply on the city buses. Less obvious is therapeutic massage and psychological support. These are two services we offer to our clients, and we have professionals who do them, so it makes sense that volunteers should benefit from such supports as well if they need them.
Finally, we recognize peoples limits. Everybody needs a rest sometime, and burnout is a high risk in this kind of work. So we make sure people take a months holiday from their volunteering duties every year.
Partnerships and alliances
An important component of the project is to find financial support for its activities. This work is carried out in several ways, including promoting fundraising events with the local community, identifying and maintaining relationships with local donors, and contacts with supporting agencies both in Brazil and internationally.
Project Hope benefits from a great deal of community support, which is often expressed in contributions of materials or services. Fundraising or recreational events often receive free food from local businesses, for instance. Local people with cars or trucks donate their time to do whatever driving is necessary, including driving patients to medical check-ups or treatment and delivering donated food and clothing to people unable to come to the centres.
Government health-care system
In recent years, Project Hope has worked closely with the Brazilian Ministry of Healths National Programme for STDS/AIDS through an agreement that is subject to review on a yearly basis. The opening of the two new centres in Guaianases and Vila Esperanca was strongly supported by the Programme, which has maintained its financing for the centres operations since they opened.
Donations and other support from outside Brazil have been very important to Project Hope over the years. The British agency CAFOD has supported some of the activities at the San Miguel centre for many years now, while CARITAS-Holland provides funding for Guaianases and Vila Esperanca. In addition, the Austrian agency DKA funds part of our education and prevention activities.
Other organizations and NGOs
Project Hope participates with about 30 other NGOs in the SPaulo NGO Forum on AIDS. This association carries out state-level advocacy on behalf of people with AIDS. It deals with issues such as public health policy and prevention measures, hospital bed availability, and provision of medicines.
Monitoring and evaluation
Project Hope holds weekly meetings of paid staff and volunteers to evaluate and follow up on individual cases. Activity reports are written daily and added to each patients file, along with monthly reports written by agents, volunteers or staff coordinators. Summary information based on these files is provided to supporting agencies for evaluation and planning.
Strengths of the project
The single most important strength of Project Hope has been its ability to improve the quality of life of people living with HIV/AIDS. This is measured in terms of numbers of people visited, medical attention given, etc. However, there are other indicators that show success of a different kind. An important indicator has been the projects ability to attract volunteers who do not have a direct stake in HIV/AIDS. For example, in addition to people living with the virus and their relatives, the project has attracted the participation of a number of volunteers who are not seropositive and have no family members living with the virus. This solidarity indicates success in the projects participatory, community-based approach.
Weaknesses of the project
Project Hopes internal evaluations recognize several weaknesses. An important weakness is the lack of professional management training within the organization. Project Hope has also had difficulty in managing the relationship between paid and volunteer work, which has occasionally led to misunderstandings or conflict.
On a broader level, the project shares the sense of many NGOs that encouraging true behaviour and attitudinal change among people living with HIV is a highly difficult goal to achieve.
For more information:
Rua Comandante Carlos Ruhi 75
08410-130 SPaulo - SP, Brazil
Fax: 5511 968 6670
Best Practice Criteria
The Project Hope logo
· Project Hope is an example of an organization which has been successful in creating systems which are both effective and contribute to the organizations sustainability. These systems have permitted the project to create and maintain a strong corps of volunteers and supporters in its local community. It has also been able to negotiate secure funding from outside sources and create linkages with both government and non-governmental institutions or groups working in the same field. These achievements highlight how Project Hope fulfils several of UNAIDSs best practice criteria.
· Relevance: Project Hopes activities align closely with UNAIDSs goals of prevention, care and reduction of impact of HIV/AIDS. The projects institutional arrangements with the National AIDS Programme are an important guarantee that it will continue to remain relevant to national strategies while responding to the local conditions in San Miguel.
· Effectiveness: Project Hopes effectiveness in operational terms is indicated by the numbers of people visited and levels of service provided. The project takes on approximately 180 new clients per year and makes about 360 home visits per month. Its strategy of involving the community has clearly been successful, given that nearly 200 people are involved on a voluntary basis. Project Hope acknowledges that it has been less effective in its other principal goal of changing behaviours and attitudes of people living with HIV - a not infrequent finding in reviews or evaluations of CBOs.
· Efficiency: there are no indicators currently available on the efficiency of Project Hopes activities. However, the teaching strategy of learning by observing for home-visit volunteers appears to be highly cost-effective.
· Sustainability. Project Hope has existed for a decade, indicating both that it responds to a need and that it has found ways to sustain itself. The organizers clearly recognize that sustainability is not only a question of securing financial resources but of paying attention to human issues such as morale, enthusiasm and communication. Having been successful in gaining relatively stable financial support from a variety of sources including local donors, Brazils National AIDS Programme, and international donors, the project has placed a great deal of thought and energy in sustaining its volunteers who are such an important part of its activities.
· For example, social activities such as dances and outings are used specifically to build morale and to recognize contributions by the volunteers in a non-monetary way. The limits of peoples energy is recognized by the use of holidays in order to prevent volunteer burnout and the provision of massage and other relaxation techniques. Regular meetings aid in communication between volunteers and between staff and volunteers by explicitly discussing volunteers needs and perceptions. Finally, the project coordinators are highly aware that their responsibilities include looking after the volunteers as people rather than as tools to provide services.
Sustainability has also been pursued through contacts with the local religious authorities, businesses and community members. These have led to a significant amount of in-kind services and goods such as driving services and the donation of food and clothing. The Catholic Churchs support through provision of the projects first premises was crucial to getting Project Hope started.
· Ethical soundness: Project Hope has proved successful at involving people living with HIV in its work as volunteers and in its management as staff members. This is one of UNAIDSs main indicators of ethical soundness. In addition, the project is socially inclusive, bringing together people from all walks of life within the community and serving clients, regardless of their lifestyles. Finally, Project Hope emphasizes a holistic, active approach to HIV/AIDS that encourages seropositive people to live their lives as independently as possible.