|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.)|
HIV in Zimbabwe
Zimbabwe is one of the countries most affected by the HIV epidemic. According to recent estimates, almost 22 percent of the adult population (or about 1.2 million people) are currently HIV-positive. To date, the number of persons who have reached the stage of AIDS has totalled 150 000. Some 400 people die of AIDS and its related diseases each week.
In parts of the country, between 50% and 70% of pregnant women attending antenatal clinics have been found to be HIV-positive.
Only one voluntary counselling and testing centre currently exists in the country, seeing an average of 30 clients per month. Another centre is
A young widow carries food and supplies provided by the Chirumhanzu project.
Facts about Zimbabwe
Total population (1995):
11 557 835
Infant mortality rate
(per 1 000 live births):
Life expectancy (years):
Per capita GNP (US$):
Surface area (km2):
Zambia on the north,
on the west;
Mozambique on the east;
South Africa on the south
with a president
as head of state
Home care, not home neglect! - Project slogan
Chirumhanzu District is a farming area in the central Midlands province of Zimbabwe. The HIV epidemic has struck the area hard. At St Theresas Hospital, which is the first-level referral centre in the District, just over half of the 253 in-patient deaths occurring in 1997 were due to AIDS, and the numbers are still increasing.
The Chirumhanzu Home-based Care Project started in 1994. It grew out of an initiative of Hospital health workers, including senior nurses, Dominican sisters, and expatriate doctors. Concerned by the overcrowded hospital wards, they were also well aware of the wish of local AIDS patients to stay at home under the care of their families up till, and including, the time of their death.
Since that time, a variety of HIV/AIDS-related services have been created, including home care for over 200 persons living with HIV. The home-based care part of the project is provided primarily by family members under the supervision of home-care volunteers. These volunteers are themselves supervised by the project coordinator and the professional nursing staff of the hospital.
Goals and principles
The project is based on two main goals:
· to meet the HIV-affected peoples needs as close to their homes and relatives as possible;
· to provide the necessary information, skills, care, materials, and support to everybody involved or interested.
From the beginning, the project has taken a comprehensive approach to care that includes not only meeting medical needs but also social and emotional needs. It promotes HIV awareness and prevention, both among the general public and among target groups within the public such as sex workers, students, and STD patients.
The project strongly believes in, and builds on, African traditions of family support and mutual obligation, including consensus to designate a direct care giver within each family. As project coordinator Etta Dendere puts it, Family is the most important resource for our clients. At the same time, Etta stresses that home care cannot be home neglect - in other words, home care must be supported because it meets patients needs effectively and not because it reduces demand on the local hospital beds.
A final principle is the participation of persons infected or affected by the virus in all aspects of the project. This principle is important not only in itself, but also because it increases the profile of persons living with HIV in the community and thus serves to reduce stigmatization.
The population of Chirumhanzu District is approximately 70 000 people, of whom almost half are under the age of 16. The dry, hilly area is quite poor. Its economy is based on subsistence farming, mostly of maize, and is highly dependent on adequate rainfall from year to year.
The epidemic arrived in the District later than in the urban areas of the country, but since the late 1980s between 150 and 200 people have tested positive each year at St. Theresas Hospital (see table below). About half of all beds occupied, and of all inpatient deaths, are HIV-related. Moreover, HIV/AIDS statistics at the hospital (admissions, in-patient deaths) are still increasing, at a time when the hospital is already over-crowded.
Positive HIV serology in St Theresas (1987 - 1996: total 140)
Analysis of these statistics indicates that of all admissions ending with the patients death while in hospital, AIDS patients stay longer in hospital than non-AIDS patients: Of the non-AIDS patients, the average stay before death was 8.2 days, with half dying after 4 days. In contrast, AIDS patients stay on average 14.6 days before dying, half of them dying after 8 days.
The project began on the initiative of hospital staff who, realizing that home care would be essential to look after the growing number of AIDS patients, went out to churches and communities looking for people willing to be trained in this task. The staff began giving workshops for trainers of home care givers in 1994. (Some groundwork had already been laid for this initiative. The Ministry of Health had earlier provided some training in counselling and home care to hospital staff in 1991, and the staff had also consulted the World Health Organizations AIDS Home Care Handbook.)
Major elements of the project
The project is organizationally separate from the hospital but collaborates fully with it in referrals and has space in the hospital wing built by the Dominican Sisters. A full-time nurse paid by the hospital works with the project, while the groups full-time coordinator is paid a small honorarium from project funds provided by the Swiss NGO Solidarmed. A smaller honorarium is also provided to a volunteer who helps the nurse and coordinator.
The projects comprehensive approach includes three main elements:
· home-based care for AIDS patients;
· support groups for HIV-positive people; and
· awareness and prevention for general public and target groups.
The first two are aimed at meeting the medical, social, and emotional needs of persons with HIV/AIDS. The third focuses on encouraging local society to take greater responsibility in accepting and caring for its HIV-positive members.
The home-based care element of the project begins with the identification of clients. This occurs mainly in hospital through the admissions process or as a result of HIV testing. If diagnosed as HIV-positive, the individual receives counselling sessions that include assessment of individual needs and wishes. This assessment helps identify appropriate follow-up procedures once the patient has been discharged from hospital.
When patients are ready to go home, a letter is provided from the hospital to the patients nearest local clinic and to the care giver and relatives. This letter confirms that the patient has been discharged for home care.
A volunteer, who has been trained as a community-based care giver, undertakes follow-up at home. Each client is visited once a week. The reports written by the volunteer following the visit are used by the project coordinator at the hospital to decide whether a home visit by a qualified nurse is needed.
Nursing materials and drugs used in the home care service are mostly provided by the Ministry of Health.
Self-care and family care givers
Many patients diagnosed with HIV are mobile and able to take care of themselves. These people receive self-care training in nutrition, hygiene, and techniques such as caring for HIV-related skin problems. The patient also receives training in positive living - taking on a forward-looking, optimistic attitude to life.
When a person needs a greater degree of care and has come to St Theresas for in-patient treatment, her or his family is asked to send a member over the age of 12 to take home-care training while the patient is in hospital. This relative is usually chosen in the traditional way by decision of the entire family, and is generally a female member relative (wife, mother, daughter or cousin.) About one in ten of the care-giver relatives are male (fathers, husbands or sons. If coming from far away, the relative is able to stay in a guest house operated by the hospital during the training.
Like self-care patients, family care givers receive training in nutrition, hygiene, oral rehydration and control of simple infections.
Volunteer care givers
Most of the projects volunteer home care givers are recruited through the Districts church parish councils and other base-level religious organizations. Criteria which guide the councils in their recruitment of these volunteers include compassion and willingness to provide spiritual support and care where needed. Most of the volunteers are HIV-positive themselves, though an increasing number are relatives of infected persons. There are currently about 30 volunteers in Chirumhanzu.
Basic training is given in workshops that are supplemented occasionally with refresher courses. The basic course teaches how to provide care and supervise the home care provided by family members.
The supervision of these volunteers is the responsibility of the project administrator and a qualified nurse. Concerns about individual clients are normally included in the reports written by the volunteers after their weekly home visit, and these can be discussed immediately with the administrator depending on their urgency. Meetings of all volunteer care givers are held once a month in order to address more general problems.
Some incentive is provided to volunteers in the form of monthly pocket money. Since the actual sum of Z$8 is only enough to buy a small item such as a bar of soap, most volunteers prefer to receive the years pocket money in a lump sum. In addition, refresher workshops and monthly meetings at St. Theresas are used partly as a way of thanking and motivating volunteers by providing a good meal and a social gathering.
The project has also created a number of support groups in the district. There are currently six groups with 12 to 22 persons in each group that come together each week on Thursdays. The numbers depend largely on how dense the population is in each groups village area, since there is no bus service to villages and members must walk to the support group meetings. Members learn about the groups through referral by the hospital or through word of mouth, and membership is, of course, entirely voluntary. One of the focuses of the support groups is to increase the economic self-reliance of members by teaching sewing (by hand and by machine) and gardening skills. People within some groups are also involved in raising chickens together. Where such productive activities are underway, the groups appoint a small committee to oversee the work and to organize monthly meetings of those involved.
Etta Dendere is the Chirumhanzu Home-based Care Projects coordinator:
Discrimination and stigma make it very hard for infected people to talk about their HIV-positive status. We need information and counselling, and we need to be able to participate in helping other people. Otherwise, living positively is very, very hard.
When I was diagnosed with HIV it was about four years after I had begun living with my husband (we were never officially married). I was pregnant when I found out... It took me a very long time before I had the courage to face my husband, but when I told him he blamed me. We had several quarrels and I went to stay with my parents.
There was no counselling available. I was trying to think of my baby in the womb, to plan for the future, but I thought I would be dead soon so I couldnt come to any conclusions. Actually, when I learned the results of my test I thought I would be dead tomorrow. I knew nothing about the difference between HIV and AIDS, so I didnt see why it mattered to think about the future. I wish Id had better information.
When my daughter was born my husband showed up because he wanted the baby. He took her to stay with his parents. She was healthy for over a year, she was even walking, but then she got sick.
My daughter died 15 days before her second birthday. No relative showed up to the funeral as people normally do in Zimbabwe. They all wanted to know the cause of death. So I had to explain about HIV/AIDS (by that time I had learned more), and how the mother can pass the virus to her unborn baby. I tried my best, but it did not make any difference. His relatives said, Etta will also kill our son - she must go. And he listened to them, although we loved each other. We used to visit each other regularly. Later I lost him to another woman. I have since lost contact with him.
By that time, I had got a lot of courage from the Dominican Sisters at St. Theresas Catholic Hospital. I openly went to Sister Kristiana for counselling, and that counselling provided my life with a foundation. She gave me some books about HIV/AIDS, and from this counselling I learned this lesson: you can live longer if you live well. Or as it is sometimes said, HIV + Good Information = Long Life.
In 1994 I went to the Hospital and joined the Kushinga AIDS Support Group. Then I began AIDS education work. I got training to be an HIV/AIDS counsellor and then went to train in home care. Eventually, I started to work with the hospital to implement our home care project, and became its coordinator. Now I can help other people in ways that were not available to me back when I was diagnosed.
This job is voluntary. I had no salary from 1994 to 1996. Then we got financial help from Solidarmed and that pays me a small honorarium as an incentive. I like this job very much. It is building me up. Caring for other people gives me back a kind of support, and the courage to go on. That is how I know that involvement of people living with HIV/AIDS in community projects like this one is a key element to success: Im living proof.
Awareness and prevention
The projects principal tool for awareness and prevention has been its drama group. The group has created a skit which it uses to entertain their public while providing information on HIV/AIDS. The group usually accompanies the nurse and coordinator when they attend village meetings, and performs at these meetings.
Recently, the project has begun to organize public netball and football clubs in the area for the communitys young people. Games between clubs are used as an occasion to give talks and to show a video about HIV/AIDS.
Currently, eight women who volunteer with the project have taken on responsibility for prevention work. These women visit popular meeting places where they teach about HIV and sexually transmitted diseases, hand out pamphlets on these subjects, and also distribute condoms.
Partnerships and alliances
From the early days, the project has been careful to work with traditional leaders in the area in order to gain peoples trust, and to overcome stigma and ignorance about HIV and AIDS. The projects initial outreach to villages begins with an invitation to the village chiefs and their advisers to visit the hospital or a clinic and to meet with the project staff. A video on home care and HIV/AIDS is shown during this visit. This is usually followed by a visit from the staff to the village, during which a public meeting may be held. This public meeting may include a presentation about HIV/AIDS by the projects drama group and a talk by the projects nurse or coordinator.
Local health care providers
The Chirumhanzu Home-based Care Project was initially set up to work mainly in the hospitals catchment area, where there are currently about 150 identified HIV-positive clients. The project also works with five government clinics in the district, with regular visits by the project nurse and coordinator.
Government health-care system
The project informs the Provincial Medical Director about its activities through its annual report. Recently, the government provided five bicycles for the project to help project members move around the area more quickly and easily.
In the 1994 - 95 period, the project received financing from UNICEF through the Zimbabwean Government. Since 1996, overseas donations have come from the Swiss NGO SolidarMed, and from German parishes and private donors with the help of the Dominican Sisters.
Other organizations and NGOs
The project is not aware of any other health-related organizations currently working on HIV/AIDS in the immediate region. However, the coordinator has represented HIV/AIDS support groups from the Midlands at capacity-building workshops given by the Zimbabwe National Network for Persons Living with HIV/AIDS (ZNNP+).
Monitoring and evaluation
Monitoring of the project is carried out in the following ways:
· monthly review of home-based care activities by the project coordinator, augmented by visits to clinics and homes;
· monthly meetings of the project members, which include reports from all activities within the project, discussion of problems, short- and long-term planning, policy review; and
· annual reports, including accounts and a budget are prepared for donor organizations.
These monitoring activities are sufficient for administrative purposes, but the project does not have enough personnel with the necessary skills to carry out the monitoring it would prefer to do. For example, more time to consider patient reports and analyse the issues brought up at monthly meetings would probably allow the project to make some valuable improvements to procedures and policy.
As the decentralization process moves more activities out to the clinics from the hospital, it is anticipated that there will be increased challenges to monitoring. In anticipation of this development, the project has created a standardized monitoring form to be use to monitor the activities of home-based care workers operating from these clinics.
Except for an evaluation of financial accounting systems carried out by the government in 1994 - 95, no formal evaluation of the project has been carried out as yet.
Strengths of the project
The Chirumhanzu Home-based Care Project has now existed for almost three years. During this time it has achieved a high degree of continuity in services and a stable financial basis for its operations through its donors.
The connection with St Theresas Hospital has been a particular source of strength and continuity, particularly because of the availability of trained health professionals to the project when needed.
An important feature of the project is the fact that it is managed by local people. The majority the project members are either HIV-positive or are directly affected in some way by the virus, such as having had a family member who died of AIDS.
Weaknesses of the project
Although the project has stable finances due to its donors and support from health professionals in the hospital, this dependence on overseas donors and foreign medical staff is far from an ideal state of affairs. Yet the area is a poor one, and there are few options for greater resource mobilization locally or nationally.
As yet, the project has not been able to get a great deal of active involvement or support from local chiefs or village health workers (passive support or tacit acceptance, however, is essential to the projects work). Some of the local chiefs feel they should receive payment for supporting the project, as do the health care workers whose regular salary is very low. The project does not have the financial resources to provide any such payment, and this lack of involvement has partly resulted in less community involvement in the project than the project feels is possible. (A promising sign, however, is that while the chiefs are not inclined to talk publicly about AIDS, many of their children attend public meetings presented by the project.)
Another reason for this weakness may be the fact that the project is too centralized in the hospital. It is hoped that the decentralization of some of its activities to clinics further away from the hospital will have positive results.
In the short term, decentralization to surrounding clinics is one of the major objectives for the project. In the longer term, the project hopes to cooperate with other home-based care or HIV/AIDS organizations on a provincial level.
Recently, the project has begun to help set up a similar project in the neighbouring district of Mvuma. Progress to date includes informing local chiefs and selection by the community of designated care givers.
Most important, the project wishes to make it possible for everyone in the area to talk about HIV and AIDS. In particular, it aims to empower all persons living with AIDS to be open about their sero-status if they wish to talk about it.
For more information:
Etta Dendere, St-Theresa
Hospital Private Bag 7015 - Mvuma, Zimbabwe
NGOs/CBOs role in the National AIDS Programme
Zimbabwe currently does not have a National AIDS Committee. All functions of managing the national response to HIV are vested in the National AIDS Coordination Programme, which is located in the Ministry of Health and Child Welfare. The Ministry of Education and the Ministry of Public Service, Labour, and Social Welfare also have had HIV/AIDS-related activities for some years now.
Zimbabwe has over 60 NGOs and more than 83 support groups of PLWHAs who are implementing a wide variety of community-based activities. At national level, the activities of NGOs and support groups are coordinated by the Zimbabwe AIDS Network (ZAN). Activities of NGOs include community-based home care, orphan care, peer education for both in- and out-of-school youth, income-generating projects, etc. The work of NGOs is also coordinated at provincial and district levels.
As well, the private sector implements a wide range of projects and activities. These are mainly in the areas of peer education, benefits management, counselling and condom distribution, STD case management in the workplace, community outreach, and financial support to community projects. However, with the exception of the latter, most of these tend to be in-house arrangements (i.e., only within the specific company.) There is as yet no collective private sector response.
Best Practice Criteria
The Chirumhanzu Home-based Care Project exemplifies the community mobilization value of participation by infected and affected persons in their own care, and shows how this provides a guarantee of a projects ethical soundness.
The project illustrates UNAIDS best practice criteria in the following ways:
· Relevance: The projects activities are entirely in line with UNAIDS priorities and guidelines for an expanded response, particularly in their contribution to care. In addition, the projects activities and strategies appear well adapted to the specific local context: widespread poverty, low literacy, and prevalence of traditional political structures.
· Effectiveness: The effectiveness of this project in terms of impact on client health and local levels of HIV-related knowledge is difficult to measure with the data currently available. (There are few other health resources in the area which might permit surrogate measures.) However, the projects affiliation with the hospital has permitted it to be highly effective in terms of numbers of people reached to date in its various activities. All persons in the district who are diagnosed with HIV are referred to the project. Another indicator of the projects effectiveness is found in its success at recruiting volunteers. Since this is usually extremely difficult in areas where poverty is rife and subsistence farming is the economic mainstay, the projects current roster of 30 volunteers (up from 24 in the previous year) is impressive.
Faced with the problem of providing information in an area of low literacy, the project has chosen three forms of communication which are most cost-effective in such circumstances: public meetings, drama, and video showings (where electricity and a VCR are available, such as at clinics or in the hospital). In addition, the creation of sports leagues for young people appears to be a highly effective way of getting public attention in a place where over half the population is under the age of 25.
· Efficiency: In an area with few financial and material resources, it is difficult to see how a home-based care project like Chirumhanzus could do more with less. Lacking other means of transportation, staff carry out much of their monitoring and information activities by hitching rides with doctors from the hospital. Premises are shared with the local hospital and all possible sharing is carried out with the five clinics in the area. Recruitment is carried out through parish organizations.
The project appears to be highly realistic in its approach to local sensitivities and traditional hierarchies. Initial outreach to villages is made first by communication with local chiefs, whose approval must be given to permit public meetings by the coordinator to be held in the village. Only then can the work of home visits and recruiting home care providers be undertaken. This may not be efficient in terms of reaching the greatest numbers of people in the shortest possible time, but it addresses the reality that the local chiefs support (or at least neutrality) is essential if the project is to operate in a specific area.
· Ethical soundness: The projects emphasis on combating social stigma and its success in encouraging participation of HIV-positive persons in its activities are strong indicators of its ethical soundness. As well, project staff appear to be vigilant about the danger that faces many home-based care initiatives: that success in providing home services or training home care providers may allow existing health systems to neglect the needs of HIV-positive people and their families. To date, this has not been the case in Chirumhanzu because of the good relationship enjoyed by the project, the local hospital and the district health system.
· Sustainability: the project is dependent on outside sources for financial backing, but appears to have done everything possible in gaining local support for its activities. The creation of support groups and the ongoing presentation of public activities to reduce the stigma of HIV/AIDS appear to be important supports to the projects continued survival and effectiveness in the future.
The Joint United Nations Programme on HIV/AIDS (UNAIDS) is the leading advocate for global action on HIV/AIDS. It brings together seven UN agencies in a common effort to fight the epidemic: the United Nations Childrens Fund (UNICEF), the United Nations Development Programme (UNDP), the United Nations Population Fund (UNFPA), the United Nations International Drug Control Programme (UNDCP), the United Nations Educational, Scientific and Cultural Organization (UNESCO), the World Health Organization (WHO) and the World Bank.
UNAIDS both mobilizes the responses to the epidemic of its seven cosponsoring organizations and supplements these efforts with special initiatives. Its purpose is to lead and assist an expansion of the international response to HIV on all fronts: medical, public health, social, economic, cultural, political and human rights. UNAIDS works with a broad range of partners - governmental and NGO, business, scientific and lay - to share knowledge, skills and best practice across boundaries.
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