(introduction...)

Community-level action - much of it initiated by persons infected or affected by HIV - has always played a major role in the global response to AIDS. In many countries, community response preceded the official national response. It has proved essential to many components of a successful national response, most notably awareness, prevention, policy and legal changes, impact alleviation, advocacy, and family or community care and support.

UNAIDS defines "community" in its widest and most inclusive sense: a community is a group of people who have something in common and will act together in their common interest. Many people belong to a number of different communities - the place they live, the people they work with, and their religious group, for example.

A community becomes mobilized when a particular group of people becomes aware of a shared concern or common need, and decides together to take action in order to create shared benefits. A community's ability to act together may have existed for centuries, or it may be triggered in a very short time by some urgent problem. In the past, community mobilization has usually meant initiatives at a neighbourhood, village, or local district level.

Today, however, the AIDS pandemic and modern communications technology have challenged traditional ideas of community. National and even global communities have emerged, with shared concerns to prevent the spread of the virus, to care for those affected by HIV and AIDS, and to advocate for health and human rights. While the concept of community has been widened, the need to design culturally and epidemiologically specific responses to help particular groups of people has created a corresponding need to define individual communities more closely.

In terms of HIV/AIDS, a mobilized community exhibits 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.

· The community seeks outside assistance and cooperation when needed.

Starting a community effort is generally much easier than sustaining it. Many community organizations and programmes have been at work for years, and continue today with the same enthusiasm. Others have withered and lost their former energy; some have disappeared. For national responses to be effective, existing community initiatives must be reinforced, and new ones must be nurtured as they establish themselves. This will require flexible partnership arrangements with governments and other forces in the campaign against HIV/AIDS, particularly in developing countries.

A huge range of activities has been found effective in the field of community mobilization projects for HIV/AIDS. However, experience indicates that Best Practice in this field is distinguished by the following basic principles:

· 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.

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

Centre for Socio-Medical Assistance (Côte d’Ivoire)

Starting Year: 1991
Main Topic Area: Community mobilization
Other Topic Areas: Palliative care · Religion · Resource mobilization

Contact Person: Dr Marc Aguirre
Phone: +225 41 80 83
Fax: +225 41 80 83
Email: 105223.3613@compuserve.com
Web Site: www.hopeww.org/

Address:
Hope Worldwide
B.P. 1021 Cidex 1
Abidjan 06
Cd'Ivoire

Implementers

HOPE Worldwide is an international, faith-based NGO. It works in collaboration with the Ministry of Health, the National AIDS Programme, and the University Hospital (Centre Hospitalier Universitaire - CHU).

Funding

Financial support comes from a variety of sources including HOPE Worldwide, USA; agencies and institutions that fund specific ongoing projects (prison, youth, counselling); income-generating activities (card-making); person with HIV/AIDS participation ($2.50 per month); donations.

Material support is also obtained through local donations by individuals and business, food and clothes drives.

Finally, technical support and training through workshops and conference attendance assistance has come from international agencies such as USAID, UNICEF, UNAIDS, UNDP, and Cooption Franse.

Objectives

The Centre for Socio-Medical Assistance began its work with the initial goals of:

- promoting decentralized care for persons living with HIV/AIDS
- providing accessible, affordable, and compassionate care
- supporting and encouraging patients to live positively with HIV.

Over time, its goals have expanded to include:

- developing a comprehensive continuum of care for persons living with HIV/AIDS through referrals and "care linking" with other services or institutions

- integrating persons living with HIV/AIDS into care and prevention programmes

- mobilizing community resources to develop and promote sustainable local action.

Background

The Centre for Socio-Medical Assistance (Centre d'assistance socio-mcale - CASM), an outpatient clinic for persons living with HIV/AIDS, opened its doors in February 1991. The motivation for this initiative came from volunteers (mainly from the Church of Christ) who were taking care of the sick and dying at the Infectious Diseases Unit of the CHU de Treichville. It soon became apparent that the vast majority of patients being admitted to the unit were HIV-positive, and that many were being abandoned, stigmatized, or neglected by family, friends, and medical personnel. After discharge, few had the means to pay for ongoing treatment, and there was an enormous need to provide persons living with HIV/AIDS with compassionate psychosocial support.

Persons living with HIV/AIDS often find that their family and community connections are shattered by the illness and the fear and stigma that accompany it. The guiding principle of CASM has been to restore a sense of solidarity between PLWHA and their community. It emphasizes that the most constructive answer to improving the quality of life lies in home and community care, and the participation of infected and affected family and community members. Encouraging the direct involvement of persons living with HIV/AIDS in counselling, prevention, support, fund-raising, income generation, and care are all activities that directly help the immediate situation.

Main Activities

CASM's main activities are as follows.

1. Medical care

CASM employs two full-time and two part-time doctors, a pharmacy assistant, and four project and support staff. It also has a four-bed capacity for those requiring IV treatments and monitoring. A nurse, who is openly HIV-positive herself, also volunteers regularly at the centre. The centre follows, as far as possible, treatment procedures outlined by the World Health Organization (WHO) in its AIDS Home Care Handbook as well as those adapted by local government. Most persons living with HIV/AIDS attending the centre are indigent and have little family financial support. Patients pay the equivalent of $2.50 per month for medical consultations and basic drugs, regardless of the number of consultations. These drugs include many of those found on the WHO essential drug list and are, for the most part, procured from the main government pharmacy at near cost price.

2. Referrals

The clinic acts as a referral centre for persons living with HIV/AIDS. Referrals come from:

- the nearby (main) infectious diseases hospital (CHU de Treichville) (the hospital, through an official agreement, offers the centre tariff reductions on all specialist consultations, labs, and hospitalizations)

- a voluntary testing and counselling centre (CIPS)

- a hospice centre (OASIS) that offers free care and hospitalization to those patients in the terminal phase of their illness and/or those who require prolonged convalescent care

- AIDS NGOs, associations of persons living with HIV/AIDS, and volunteers that provide support and follow-up at a community level.

It also takes a small proportion of referrals from the private sector and from health services in outlying regions.

3. Counselling

The centre employs two counsellors (one full-time and one part-time) and one psychologist. Various counselling and support strategies/techniques (such as group counselling, video viewing, and picture codes) are used to promote acceptance of seropositive status as well as positive living and coping strategies. Counsellors from the centre also form part of a "trainer of trainers" group, which is regularly called upon by the National AIDS Programme, institutions, and agencies. (CASM has also conducted multicentre research on the impact of counselling on persons living with HIV/AIDS.)

4. Home-based support

The centre has a team of approximately 20 community agents who provide home-based support for persons living with HIV/AIDS from the centre. During the home visits, agents assess living conditions, address psychosocial needs, and, when necessary, accompany ill persons with HIV/AIDS to the centre or to the nearest hospital. Community agents also spend one day a month at the centre counselling those attending the clinic. All information obtained and needs and services rendered are recorded after the visit to assure proper follow-up. Community coordinators interact regularly, and community agents meet once a month to discuss relevant cases, issues, problems, and ways to improve the programme.

5. Support for persons living with HIV/AIDS

In 1994, CASM facilitated the development of the area's first support group for persons living with HIV/AIDS, the Club des amis. Its goal was to provide opportunities for persons living with HIV/AIDS to share common experiences, hopes, and fears and to rebuild dignity, a sense of self-worth, hope, and friendships. Daily, a core of club members supports clinic staff with counselling and support issues, fulfilling their desired role as peer educators and counsellors. Club members are also actively involved in joint AIDS prevention programmes (including participating in the centre's theatre group, whose name, Kazenze, means "staying together"). The centre has also provided persons living with HIV/AIDS with nutritional, material, and financial assistance. With the support from the Lions Club, a local NGO called Initiative Plus, and a group of four to six volunteers, the centre provides a daily free breakfast to all its clients. The breakfast table also serves as a safe place for discussion and interaction between persons living with HIV/AIDS.

6. Income generation

Through various income-generating projects and donations, CASM has been able to provide small cash incentives to persons living with HIV/AIDS who have requested financing of viable projects or who need urgent financial assistance. These have been given mainly to support indigent HIV-positive women and children. Patients are encouraged to participate in card-making, earning 20 per cent of the sale price of each card.

7. Support for orphans

Together with one of the associations of persons living with HIV/AIDS, the centre has been able to support a small number of orphaned children by keeping them in school and providing them with basic support and provisions. The centre also holds an annual Christmas party for orphans and severely affected children. This event has been well supported by a wide range of partners.

8. AIDS prevention activities

The centre's prevention programmes have in recent years targeted four particularly vulnerable groups: women, young people, prisoners, underserved communities. Peer educators have been trained within most of these target groups. Group discussions, community conferences, slide shows, theatre, personal testimonies, and other strategies have been used to achieve the greatest possible impact. Many of these interventions have been designed in collaboration with other NGOs and youth and sports associations, and have included the participation of persons living with HIV/AIDS in their design and execution.

9. Volunteer contributions

In most of its activities, the centre benefits enormously from a large pool of volunteers. Many of the CASM staff first began working as volunteers. Volunteers come from AIDS NGOs and associations, religious groups, international institutions and agencies, and from concerned members of the community. Volunteers support the centre in a number of ways and at different levels. Within the centre, they provide counselling and support, help with the daily functioning of the centre (cleaning, typing, filing, and so on), cook and serve breakfast, make greeting cards for sale by the centre, and decorate the centre in order to make it a pleasant and inviting place. Outside in the community, the volunteers carry out home and hospital visits to patients; help with AIDS prevention campaigns, marches, and conferences; sell cards made at the centre; and carry out fund-raising and publicity. The volunteers, particularly those assisting within the clinic level, receive small financial and material rewards as well as free medical services. Coordinators, who meet regularly with volunteers, organize volunteer activities at both the clinic and community level.

Outcomes

- On average, 25-30 new patients are referred to CASM every month. The ratio of men to women referred is now equal, a major change since the first few years when it was almost 4 to 1. The average age of those referred is 25.

- The community agents make about 40 home visits to patients every month.

- The Club des amis is now a fully fledged association in its own right (with over 300 members) and has itself facilitated the creation of three other associations for persons living with HIV/AIDS.

- Prevention programmes have reached over 200,000 people over the past five years.

Lessons Learned

CASM's experience with resource mobilization provides some important lessons. Over the years, the centre has developed important local resources that underpin its activities and allow it to meet many of its objectives. The most notable of these are:

- a large pool of committed volunteers

- strong collaboration with associations of persons living with HIV/AIDS

- formal links with other services and institutions that strengthen the care continuum available to patients.

Developing such resources is essential for any project with CASM's goals and target population.

Given the severity of the epidemic and the fragile economic condition of the area, the centre at the same time has learned the limitations of local resource mobilization. Despite the development of local resources, the project is highly dependent on external funding, and lacks the resources to hire trained managerial staff. It does not have sufficient funds to purchase all the basic drugs it needs to meet patient demand. Project staff believe that untapped local resources exist that might be used to reduce its dependence on outside donations, but the centre has been unable to find entry to these resources.

Further Reading

See www.hopeww.org/Where/Africa/africa5.htm for a general description of this project.

Kariobangi Community-Based Home Care and Home-Based AIDS Care Programme (Kenya)

Starting Year: 1986
Main Topic Area: Community mobilization
Other Topic Areas: Palliative care · Counselling · Religion

Contact Person:
Mr Charles Thumi
Sister Gill Horsefield, MMS

Phone: +254 793 266/793 288

Address:
Kariobangi Community Health
Programme
P.O. Box 53376
Nairobi, Kenya

Implementers

The organization in charge of the project is the Medical Mission Sisters Health Programme.

Funding

The main funding for the programme comes from Memisa Medicus Mundi (Netherlands)/Cordaid. Initial help with publicity materials was received from UNICEF. The programme also receives funds from parish groups overseas and locally.

Objectives

The goal is to enable the people of Korogocho to cope with AIDS physically, socially, and psychologically by:

- training community health workers to care for persons living with AIDS
- providing a backup team of medical and social services professionals to enable this to happen.

Background

Korogocho, the slum in Kariobangi in which the programme is set, is 12 km east from the centre of Nairobi. It has a population of over 100,000 (recent unconfirmed statistics suggest it is now 130,000). Most people live in single room shanties made of plastic, tin, or mud. Sixty per cent of homes are headed by women alone. Most residents have no land and are living as squatters in the slum. As there is little opportunity for work, most try to earn a living by very small-scale trading, and by scavenging on the city dump, or by alcohol-brewing and survival prostitution.

A survey conducted in two large neighbourhoods in the Korogocho slums showed that 32 per cent of the population was HIV-positive; 14 per cent of those infected had AIDS. Due to their poverty, some 22 per cent had never sought medical attention.

The Community Health Programme was begun in 1986 by Sister Gill Horsefield, MMS, and commenced its AIDS-related activities in 1989-90.

Main Activities

The programme delivers many of its services through the volunteer work of community health workers (CHWs), who are all from Korogocho itself. The CHWs are supervised and supported by a professional staff of five nurses, two counsellors, a social worker who visits mothers with AIDS and helps them plan for the future of their children, and a pastoral worker who serves patients' spiritual needs. There is also a diagnostic laboratory for TB in the Deanery of the local Catholic church.

The programme has six main activities:

1. Care for the sick

The programme recognizes and attempts to build on the fact that most of the care that persons living with HIV/AIDS will receive, realistically, will be provided by relatives (not just adults, but frequently by children) and friends of the patients at their own homes. Therefore, the programme improves and supports this existing care resource through voluntary community health workers. The workers provide friendship and moral support, bring medicines, and teach home-nursing skills to the patients' relatives and friends. Where necessary, workers bring food during their visits - either a cooked meal provided once a day, or dry food to be cooked for the patient by family members. If food is provided, it is for the whole family rather than just the patient, a necessity given the difficult circumstances in which most AIDS-affected families live.

2. Referral system

The community health workers live in the slum, and they are each responsible for a small area. When someone in the area is sick, the CHW will be told by neighbours. She will visit the person to determine the seriousness of the illness. If it is a minor sickness, she will advise on home treatment or perhaps recommend a visit to the dispensary. If the sickness is serious, or the patient appears to have symptoms of AIDS, she will call the nurse, who will visit the patient with her and make a diagnosis. If the patient has the symptoms of AIDS, he or she will be registered in the programme, and the health worker will then visit regularly, and report every week to the nurse on the patient's condition. Some patients require additional care in between reporting times. In such cases, CHWs can contact the nurse in the morning when she arrives to visit the area. Once diagnosed as having AIDS, patients are prescribed their medicines by the nurses, and the medicines are delivered by the CHWs.

3. Crisis care for persons with AIDS

An aim of the programme is to help patients to stay at home until they die. When care at home is beyond the abilities of relatives or friends, there is a small hospice, run by the volunteer health workers, where patients can be looked after following a major downturn in their health. The hospice has four beds but usually has only one or two patients at a time.

4. Crisis care for children

The programme provides medical care to children living with HIV, but also runs a Child Crisis Centre where children can stay temporarily when a mother is too sick to cope, or when a mother dies suddenly. This need has emerged as adult mortality due to AIDS makes it increasingly difficult to find family members to care for orphans. The Crisis Centre is also a safe haven where children who are caring for sick parents come to learn, and where they can always come to get advice, moral support, and emotional support.

5. Children's programme

Child-headed households are becoming more common. Even when a very small child is sent to grandparents, the eldest child usually remains in the family home with the responsibility for caring for the other children. The children's programme was created for children who are healthy themselves but who will in the future be orphaned. They are invited to join in order to prepare for life without parents. They learn how to care for their sick parents and also how to bring up their younger brothers and sisters. While learning, they share a great deal together, and so form supportive groups that, it is hoped, will help them in the future.

6. Recruitment and training of community health workers

The community health workers are chosen from the small Christian communities of the neighbourhood. These communities are mutually supportive groups who expect all their members to perform some sort of service within the community. Huduma ya Afya (Service for Health) is one of the services for which members can volunteer. They are trained in community-based health care at Korogocho village school, where they have weekly classes for about five to six months. After working for a year, they receive a badge and a certificate. The CHWs are regarded with great respect in the neighbourhood, and are regarded as peers by the professional staff, who support them and help them to increase their knowledge. Some of the health workers are trained as counsellors; most of them have supplies of medicines for treatment of symptoms, and some have supplies of antibiotics. Those who work in the hospice have received training in psychological and pastoral care of the dying.

The CHWs are involved in all decision-making about the development of the programme. Their strong Christian motivation is reinforced by the gratitude and support with which they are treated by both patients and professional staff. Some of the CHWs have been working for 12 years and feel that, in spite of receiving no financial reward, they have gained a great deal in terms of increased abilities and confidence.

Outcomes

The programme's current patient load is 787 persons, with a cumulative total of 3,746 persons served since 1990. There were 537 new patients in 1999.

In 1998, 68 volunteer health workers provided medical care and moral support to 1,880 persons living with AIDS, including 172 babies and children.

Evaluation Findings

Analysis of the programme budget for approximately 2,000 patients found an expenditure of $13.40 per patient per year (this sum includes the cost of medicines, staff salaries, transport, running a car, and administration). Of this, $2.20 represents the cost of medicine per patient per year. The cost of training per community health worker was calculated to be $7.00.

Lessons Learned

The experience in Kariobangi illustrates that a programme built largely on volunteers can make a significant difference in the lives of people living with HIV/AIDS in a very poor community. Three conditions appear to account for much of the programme's success:

- the energy and dedication of the volunteers, most of them highly motivated by religious faith, and the locally appropriate manner in which they are recruited (i.e., the fact that recruitment is based on the respect that the community holds for the candidates)

- support and supervision provided by a professional staff

- a web of local partnerships, including nearby health institutions and other NGOs working in the area.

At the same time, the programme's experience also illustrates the limitations imposed by lack of local resources. The programme is highly dependent on external financing. Without it there would be no administrative budget, no salaries for professional staff, and little money for medical supplies.

Lessons have also been learned about the difficulty of dealing with AIDS in a culture where there remains considerable stigma attached to the disease (although there appears to be somewhat more openness about the subject than even a few years ago). A staff member comments, "Often people will talk about 'this sickness' and everyone knows what they are talking about, but they don't actually call it AIDS. All the professional staff know the HIV status of all the patients, but keep the information confidential. The community health workers can only know a patient's status if the patient herself/himself shares it with them. Nonetheless, most community health workers have a very good knowledge of the signs and symptoms of AIDS, and are fully aware of any given patient's situation."

An important problem raised by continuing stigma is that of informing children about their parents' serostatus. Community health workers have been trying to persuade HIV-positive parents to share this knowledge with their children, but so far with little success. Very often the children know, or at least suspect, and the workers feel strongly that if the truth of the situation could be discussed openly within families, it would be easier for the children. However, confidentiality forbids this without the parents' consent.