|Comfort and Hope, Six Case Studies on Mobilizing Family and Community Care for and by People with HIV/AIDS (UNAIDS, 1999, 94 p.)|
Facts about Kenya
Total population (1996):
29 137 000
Annual population growth rate:
Infant mortality rate (per 1 000 live births):
Life expectancy (years):
Per capita GNP (US$):
Surface area (km2):
HIV/AIDS in Kenya
The true number of HIV/AIDS cases in Kenya is not known. In 1997 it was estimated that about 2.1 million people were infected with HIV, of which some 200 000 people had developed AIDS. The number of HIV cases is estimated to be growing at a rate of 7.5% per year.
The HIV/AIDS epidemic in Kenya is likely to have a significant impact on the demography of the country. Demographic projections show that AIDS could potentially reverse gains made in increasing child survival and life expectancy.
According to one analysis, the number of orphans will increase from the 1990 estimate of 25 000 to roughly 600 000 by the year 2000.
An analysis carried out on the socio-economic impact of HIV/AIDS in Kenya by Family Health International/AIDSTECH reveals that:
1. By the year 2000, the cost of caring for people with AIDS could consume the MOHs entire recurrent budget unless appropriate alternative forms of health-care and health care financing are immediately promoted and adopted;
2. On average, AIDS causes the loss of three-fifths of an infected persons productive life, or approximately 22 years:
3. The total direct and indirect costs of AIDS to the country could reach 15% of GDP by the year.
The diocesan HIV/AIDS programme evolved from I the initiative of Dr. Frank Engelhard, from the Dutch organization Memisa, who came to Mutomo Hospital in 1989 following work in Uganda. Observing that some PLWHAs were presenting with symptoms of AIDS, he arranged for a visit to Kikova Hospital in Uganda by six diocesan representatives, including Mutomo Hospitals chief medical officer, Dr. Marian Dolan. Soon after, nurses were selected from the two Mission hospitals of Mutumo and Muthale to be trained in basic counselling by the Kenyan Red Cross.
In 1992, a pilot project was started. After the project was in progress, the need for further training in counselling was identified and it was decided to include the staff of the two government hospitals of Kitui and Mwingi. This led to collaboration with the Ministry of Health, and the evolution of the HIV/AIDS programme with outreach, home care and group counselling.
The goals of the programme are:
· to reduce the incidence of HIV infection; and
· to enable people infected and affected by AIDS to live positively.
These goals are pursued by two means. The first is to provide counselling and holistic care to people infected and affected by HIV/AIDS. The second is to cause behavioural change by increasing public awareness of both the impact of the epidemic and methods to prevent its spread.
The programme provides an important service to the local health system as it helps reduce the bed occupancy rate in the areas four hospitals. With home care offered as an effective alternative in a familiar environment, people living with HIV can be discharged as soon as they learn their sere-status and have been given counselling.
HIV/AIDS in a poor rural area
Kitui and Mwingi are two districts in eastern Kenya that make up the diocese of Kitui. Together they cover an area of 29 389 miles and have a total population of over 812 000 people. There are no industries in this arid and semi-arid area, and most of the people depend on small-scale farming and livestock. Unfortunately, intermittent droughts result in frequent food scarcity and famine.
Poverty is widespread, and there has been a marked migration of men between the ages of 16 and 50 years to the larger Kenyan cities in search of employment. Many return home during the Christmas and Easter holidays. Some women visit their husbands in town during these holidays or at the end of the month.
The population in the catchment area of Mwingi and Muthale Hospitals numbers about 102 000 people, of which 46% are male and 54% female. Of the estimated 43 000 people in the sexually active age group (16-60 years), about 10% are in primary school and 26% are secondary school students. In the catchment area of Kitui Hospital, the population is 138 000 and the sexually active age group contains 36 800 people. Both catchment areas are situated on the lorry routes from Mombassa to Kitui and Nairobi to Garissa, with stop-off points in small towns along the way.
The HIV/AIDS situation in the area is very serious. Some 40% of beds in the areas four hospitals are occupied by people living with AIDS. Owing to poor nutrition, which is the result of frequent droughts in the area, resistance to infection is low, and people living with HIV present with many opportunistic diseases. Most cannot afford the treatment such diseases require.
A 1996 sentinel study survey conducted in Mutomo hospital found 10% of mothers to be HIV-positive. The estimated number of HIV-positive adults (male and female) in the district was estimated at 30 695. At the 7.5% rate of growth in infections nationally, it is expected that this number will have grown to almost 33 000 by the end of 1997.
Major elements of the project
Pre- and post-test counselling
Some clients are referred for testing by doctors at the hospitals, while others simply arrive and ask to be tested. In both cases, counselling is given in all four hospitals both before and after tests are done. The home-care clinic provides the following standard services, the first three of which apply to all clients:
· introduction of people living with HIV to counsellors;
· ongoing counselling on living positively with HIV;
· clinical check-up;
· provision of drugs for opportunistic infections and STDs as required;
· preparation of people living with HIV for home visits and group therapy; and
· preparation of family members and friends for roles as care givers.
While some features of the counselling are general, some types of clients are handled in specific ways, according to their particular needs:
· TB patients who are referred for HIV tests are given pre-test counselling before they receive treatment with TB drugs. This is because the drug Thiazine has many side effects on people living with HIV and may result in death.
· Children who may be infected with HIV are not tested until they are two years old. Their growth is monitored, and their mothers are taught how to maintain their children in good health. This includes education about opportunistic infections and the importance of getting immediate treatment for children if they fall sick.
· Elderly care givers who are taking care of orphans are given supportive counselling and are supplied with limited material support such as second-hand clothes and food such as maize, beans, sugar, and tea leaves.
Following the people living with HIVs discharge from hospital, a home visit is made by the counsellor. This visit serves to introduce the counsellor to these peoples family and begin to develop trust with them. Again, home visits include some standard services:
· assessing home conditions and family needs;
· assessing physical, emotional, psychological, and physical condition of people living with HIV;
· supportive counselling for persons living with HIV and family members;
· identifying or meeting guardians (described below);
· providing simple curative medicines; and
· schedule next visit.
A variety of issues are discussed in home visits. The person living with HIV is encouraged to identify a guardian from among close family members (mother, father, sister or brother) who will be responsible for the orphans. This guardian will also act as a contact person if the person living with HIV becomes ill and cannot visit the hospital. At these times, the guardian will go to the hospital to report on this persons condition to the counsellors. In addition, the guardian and other family members are given training in home care of people with HIV/AIDS.
All information that comes up at these visits is kept confidential. Notes and other information are available to all counsellors and doctors associated with the project, but no one else.
Group counselling sessions
Group counselling sessions or workshops for people living with HIV is an important way to assist people to come to terms with their condition. Typical activities at the sessions include:
· sharing experiences, both positive and negative;
· encouraging people living with HIV are encouraged to express their feelings and learn how to deal with them;
· helping people living with HIV to identify their own strengths and talents; and
· discussing small-scale businesses and other income-generating activities.
Group counselling discussions have also been useful in identifying the need for workshops on health maintenance and ongoing education for personal growth.
The project attempts to provide members of the community with basic HIV/AIDS awareness, and to encourage the community to take responsibility for persons living with HIV and for orphans. To this end, HIV education visits are frequently made by counsellors (including persons living with HIV) to schools, hospitals, workplaces, churches, and public gatherings. Depending on the audience, the information is given in a variety of forms, including Training of Trainers (TOT), seminars and workshops. The project also encourages competitions in drama, poetry, and songs on AIDS.
Health education visits also target behaviour change in specific audiences. These have included teachers, youth groups, primary and secondary schools, mens and womens groups, traditional healers, traditional birth attendants, sex workers, and hotel and bar workers. It is recognized that such change is a gradual, ongoing process because there is still a stigma associated with the disease and some fear of programmes and personnel working in HIV/AIDS prevention.
Recruitment of persons living with HIV as volunteers
Recruiting people living with HIV to act as volunteers is a recent and very important step of the programme. Denial and stigma are still very strong in Kenya, and this is an effective way to educate the community at large. To date, two persons living with HIV assisted by counsellors have made educational visits to locales away from where they live. In these visits, they have spoken of their sero-status and experiences.
This activity is supported by group counselling which, in addition to helping people living with HIV come to terms with their condition, has encouraged them to see the need to assist in the education of the community. It is hoped that this activity will expand and develop in the near future.
Services for people with STDs
The programme provides treatment and counselling to people who have sexually transmitted infections (STDs). This is an important service in this area, which has a high incidence of such infections.
Preparing people for death
A variety of services are provided to people who are dying. These include helping them identify guardians for their children, and helping them write wills to ensure that their land and belongings are passed on to their children. Efforts are made to help people with AIDS spend their remaining days in familiar surroundings, and to die with dignity.
Encouraging economic activity
Some people living with HIV are helped to identify their existing talents and skills that might enable them to set up small businesses. Examples of products which might people living with HIV are taught to sell include second-hand clothes, utensils, and groceries. Skills that are taught include marketing and sales skills, book-keeping and simple accounts, stocktaking, and interpersonal customer relations.
This activity is carried out in collaboration with the Ministry of Health, Catholic Diocese, Church of Province of Kenya, the municipality and the Kitui county council.
Provision of simple curative medicines
Persons living with HIV/AIDS are provided with simple curative medicines, including anti-malarials, anti-diarrhoeal, and anti-fungal drugs, multivitamins, and antibiotics.
Basic supports for needy clients
Very needy clients are assisted with their food needs such as beans, maize, flour, eggs, and milk. This assistance is assessed on the individual level in order not to encourage dependency. During the current famine conditions, seeds have been given to people living with HIV in each area.
Staff training and support
All staff in the project are nurse/counsellors. Some are qualified as trainers of trainers, while others are trained as facilitators of groups, workshops, and seminars. Regardless of their origin, all receive ongoing training in counselling and topics such as personal development, education for life, and behaviour change.
Hope for the Chende family
This story was provided by a nurse/counsellor
Mr Chende* is a local man who, like many in the District, often works in other parts of the country. In 1986 he was working in Mombasa for a large company. One day he began to feel fever, chills, and pains in the joints. The fever subsided for a while, then reoccurred. That went on for years, and during that time he received frequent treatment for malaria, joint pains, and colds.
* Not the real name. Shortly before printing, UNAIDS was informed that. Mr Chende had died.
In 1990 Mr Chende was admitted at Mutomo Hospital with herpes zoster, and a blood-screening test for HIV was ordered. He received pre-test counselling before that test was carried out, and then post-test counselling when the results came back. It was bad news: Mr Chende bad HIV.
The post-test counselling session made it easier for Mr Chende to come to terms with his condition. He was discharged from Mutomo with a referral to Kitui Hospital, which was nearer to his home. He also was invited to join in group counselling, for the next few months, Mr Chende received treatment for the herpes infection and attended the group counselling sessions. There were many issues to think through, since he was not only married but had three children. As well, since he was seriously ill, he was counselled tell his wife about his HIV-status. He agreed, and soon shared the information with her.
Mrs Chende came into the Hospital with her husband for counselling, and agreed after the session to be tested for HIV. Two weeks later she came back for her results and post-test counselling. She too was positive. After that, she began to go with her husband to group counselling sessions.
With both parents sick and three children to support, the family was very poor and needed help. They decided to share their HIV status with their close relatives, but requested that they be supported by nurse/counsellors when they did so. A meeting of relatives was called, and the nurse/counsellors informed them in confidence of the Chendes condition. They also asked the clan and family members to support and care for the Chendes. This request was accepted, and today they receive a great deal of support from these relatives. Additional help came when Mrs. Chende asked the programme coordinator for help to build a small house. Having very limited funds at her disposal, the coordinator organized a small fundraising in the community. Neighbours donated iron sheets and some of the young people in the Chendes village made bricks for the house.
Mr Chendes condition remains poor due to severe skin cancer (Kaposi sarcoma), but he and his family are much more comfortable in their new house. They are also very happy with the services provided by the community and by home-care staff.
Mr and Mrs Chende continue to attend group counselling sessions, and have become more involved in the programme. Both help prepare food for the group, and both give encouragement to other people living with HIV. They continue to enjoy the support of their clan and family members.
Staff are supported by central office as needed. However, all participate in meetings held every six months to plan, evaluate, and implement the projects activities.
Confidentiality is essential to the programme, since is the only way to maintain trust in the relationships between counsellor and person living with HIV and between people living with HIV themselves. Already part of the code of nursing ethics, confidentiality is emphasized to people living with HIV from the moment they join the programme.
At the same time, candour between people living with HIV is essential to group counselling, since the practice of people living with HIV acknowledging their status at each group session is vital in their acceptance of their status. It is part of their education in self-awareness, and in acknowledging and accepting their feelings. Along with spiritual care, these elements help people living with HIV greatly in personal growth and overcoming stigma.
Partnerships and alliances
Government health-care system
The programme collaborates on an ongoing basis with Ministry of Health personnel. This collaboration began in 1993 with the secondment of two Diocesan nurse/counsellors to the Government Hospitals at Kitui and Mwingi.
The Ministry has financed some of the programmes World AIDS Day activities and the National AIDS Programme has provided it with educational materials. Recently, all four hospitals have been accepted by the Ministry as Sexually Transmitted Infections centres, which will greatly assist the programme in its work against HIV infection.
The government hospitals supply the programme with some nursing materials such as gloves and disinfects, while others are bought by the programme. In addition, some free drugs are distributed to people living with HIV/AIDS in the government hospitals and the Mutomo Mission Hospital.
Monitoring and evaluation
Group counselling sessions are held once every two weeks, and use self-evaluation.
Monitoring of the programmes activities in home care clinics and hospitals is carried out on a monthly basis by supervisors.
Every three months, programme personnel meet with Ministry of Health personnel. Evaluation and planning sessions for programme staff are held every six months.
Strengths of the programme
Self-assessment by the programme indicates that staff are well trained and motivated, with the concrete benefit that minimal supervision of staff is needed. Provision of group counselling for staff is an additional source of strength for staff.
Communication between the various groups in all four hospitals is good, as is collaboration with the Ministry of Health.
Weaknesses of the programme
Our self-assessment is that two important elements in the programme itself need reinforcing:
· more effort is needed in education aimed at changing attitudes and increasing acceptance of sick people by families and the community; and
· there is not enough coordination between our programme and other NGOs, government departments, and the community. Regular meetings, even on a half-yearly basis, might help ensure that all necessary activities are being covered and to avoid overlapping of efforts.
Otherwise, the main weaknesses appear to be directly related to the increasing gravity of the epidemic and the lack of resources available to deal with it. For instance, with 200 new orphans being identified each month, the programme is unable to serve all orphans being left without caretakers. Similarly, there are not enough counsellors or material resources to meet the rising demand for counselling services, which are very time-consuming activities. This results in increasing physical and emotional stress on counsellors. It has also caused a problem of confidentiality because it is impossible for only one counsellor to follow each person living with HIV, so information must be shared between counsellors. And it has made it difficult for counsellors to keep abreast of new practices in the field of HIV/AIDS.
The programme has resolved to fortify itself and I improve its services in the following ways:
· increasing emphasis on mobilizing extended families to take care of orphans;
· running a workshop on behaviour change and education for life;
· continuing education for counsellors to keep up with HIV/AIDS developments globally; and
· increasing networking at local and national levels.
For more information:
Kenya AIDS NGO Consortium was established in 1990 with over 320 member organizations (UNAIDS in Kenya, 1996).
Important role played by NGOs and religious groups. Religious groups emphasize awareness and prevention activities. NGOs focus primarily on high-risk populations, emphasizing IEC, condom distribution and training for community-based workers.
Best Practice Criteria
The HIV/AIDS Programme of the Diocese of Kitui exemplifies the types of action that can be undertaken to improve the quality of life for infected and affected persons.
The project illustrates UNAIDS best practice criteria in the following ways:
· Relevance: the programme is focused on two UNAIDS priorities: prevention and care. A wide variety of needs are provided for within this programme, from individual needs to care and counselling to community education.
· Effectiveness: from a top-down perspective, the programme takes a highly organized and professional approach to its activities, as could be expected when all staff are trained nurse/counsellors who are employed by a well-equipped mission hospital. Effectiveness also appears to be enhanced by a high degree of cooperation with the government health services, allowing collaboration between four hospitals in the area.
On the level of services, the programme has clearly taken into account the diverse needs of specific groups of people living with HIV, and appears to have devised effective strategies for each. Different groups include PLWHAs with HIV-relevant medical conditions such as TB and STDs, seropositive or potentially seropositive infants, elderly care givers, and people who are in the terminal stages of AIDS.
Programme staff express concern that success in changing attitudes and behaviour in the greater community has so far been limited, particularly with regard to increasing acceptance of people living with HIV/AIDS. It seems likely that effectiveness in these areas of endeavour will remain limited unless greater resources become available for community education.
· Efficiency: There are currently no indicators available of the projects efficiency.
· Ethical soundness: the Kitui programme is run by trained nursing staff with a strong grounding in their professions ethics. Awareness of the need to safeguard confidentiality is solid, although the limited number of staff makes it necessary for counsellors to share information among themselves.
· Sustainability: the sustainability of the programme appears to be guaranteed by the support of both the mission and government hospitals, and the Ministry of Health. It is to be hoped that greater involvement with local community (i.e., a less top-down approach to services) may become possible as more volunteers are recruited and the growing impact of the epidemic reduces the current stigma attached to it.