MOBILE AIDS HOME CARE AND ORPHANS PROGRAM
ANNUAL REPORT 1999
INTRODUCTION:
For twelve years now, the program continues with the struggle against HIV/AIDS and its effects right into the new millennium. During this period, the program has grown extensively, in the struggle to address the needs of the poorest among the poor, individuals and families infected/affected by HIV/AIDS.
Since most of the Program’s activities are intended to address the consequences of the HIV/AIDS pandemic, we are obliged to make some observations in this area. The HIV/AIDS situation is still alarming not only in the Program’s operational areas but world over especially in the sub-Saharan Africa (SSA). Data from the Joint United Nations Program on AIDS (UNAIDS) indicated that in 1999 there were 23.3 million people living with AIDS (adults and children) in SSA compared to the world figure of 33.6 m. Uganda itself had 1.9 million people infected. While the estimated number of new infections in SSA for the same year was 3.8 million compared to 5.6m world-wide. The estimates for those people that have died of AIDS during 1999 is about 2.6 m globally and 2.2m for SSA. It is estimated that Uganda has lost about 1.8m people of AIDS since the epidemic.
In 1998, UNAIDS estimated that 930,000 Ugandans were living with HIV infection or AIDS out of the population of 19 millions. Among the adults, the current infection rate is estimated to be 9.5%.
On the other side of the coin, declines in HIV incidence and prevalence in Uganda have been observed. The President noted that the National HIV Infection rate has declined from 30% in 1991 to 10% in 1999. Similarly, the rate of STI has dropped significantly. However, he continued to say that this is still high and more efforts should be put in place to reduce it (New Vision 2.11.99).
In fact the statistics above imply that the HIV/AIDS problem is still with us and that there is still need to reinforce strategies that aim at combating the situation. The fact that there is no cure for the deadly disease as yet is enough to put us on the move with a multi-sectoral approach to address the same.
As a resultant of HIV/AIDS, it is estimated that up to the end of 1999, there is 11.2 million orphans world wide, SSA holds 10.7m out of this while Uganda has 1.7m. Orphan-hood does not go without prior impact. The long illness and death related to AIDS impact psychologically on children and young people even before they face the hard life of orphan hood in extended families. The issue of the eldest child becoming the family head leaves a lot to desire. This happens to the children often in their teens, when they are hardly able to offer any leadership.
1999 made it three years since the World AIDS Day is commemorated world wide on 1st December of each year with an aim of strengthening the anti AIDS struggle. The theme of the year “Listen Learn, and Live - World AIDS Campaign with Young people’ recognised the vulnerability of children and young people (0 – 25 years) with an aim of listening and learning from them. This group is both infected and heavily affected by HIV/AIDS. The Programme fully participated in this activity at National, District and local levels.
Amidst all these challenges, the Program continued with the planned activities throughout the year. Inspite of the problems encountered, there is remarkable achievements noted.
Overall Aim of the Programme
¨ To address the psychosocial and economic consequences of HIV / AIDS among the targeted communities.
Target Group
¨ People living with HIV/AIDS
¨ Orphans and their families
¨ Teenage school dropouts
¨ The Youth and Women
¨ Community Workers
The Programme Activities in General
· HIV/AIDS Home care
. Medical/palliative care
. Counselling
. HIV testing
. Health education
. Social/material support
· Orphans care/Family support
. Training in organic/modern farming
. Formal education and vocational training
. Income Generating Activities (IGA)
. House construction/repair
· HIV/AIDS preventive education/behavioural change process and training to all targeted people/communities.
· Psycho-social support
. Individual/group/family counselling
A. HIV/AIDS Home Care
Home care activities for HIV/AIDS clients continued as planned except for some areas of Rakai District. From July 1999, AIDS patient care activities were cut off for most of the targeted Sub Counties of Rakai District due to lack of funding. (DANIDA withdrew its funding after FY 1997/98). However, with a lot of pressure, we managed to maintain the home care activities in the three Sub Counties of Lwankoni, Kabira and Kirumba (these particularly border with Masaka District).
We as well continued with the identification and treatment of STI and TB clients including those in the cut off areas of Rakai District. During this period, we came across several clients complaining of Vesicle Vaginal Fistula (VVF). (This is a condition for mothers resulting from complicated deliveries leading to urine incontinence). In response, an informal quick survey was done in July 1999 to assess the situation and 113 cases were spotted in Rakai, Masaka and Ssembabule Districts.
A. (1) Project Objectives
· To provide medical, counselling and social support to AIDS patients in their homes/home areas in order to prolong their lives and allow them to die with dignity.
· To help the family cope during this difficult period by offering counselling services and socio-economic support where appropriate.
· To provide HIV Testing including pre and post-test counselling to those who request for it.
· To provide HIV preventive and health education to the target communities.
A. (2) Brief description of the current local, regional and national situation and how this affects both beneficiaries and the implementation of the project.
As mentioned in the introduction, the HIV/AIDS situation in the country is still alarming. People still get infected, sick and die of HIV/AIDS on a daily basis. There is still need to continue with activities that aim at alleviating the situation. There is no cure for the deadly disease although vaccines are being tested. Most of the people infected and affected by HIV/AIDS are vulnerable, very weak and unable to work with meagre incomes. So there is need to support this group physically, economically, psychologically and socially. Given the overall level of poverty and lack of resources of health and social welfare in Uganda, the vision of the MOH is to have People living with HIV/AIDS (PLHA) cared for in the home by family members or by community AIDS care providers.
By policy, Government is supposed to support more strongly the NGOs that are involved in this struggle. Many NGOs and CBOs are intensively involved in the care though the number of individuals/groups requiring care far out numbers the services available particularly in the rural areas. The limited resources available for such services aggravate this. It was noted by WHO director of Africa (New vision 30/9/99) that although Africa hosts over 80% of the world’s people living with HIV/AIDS it does not get 80% of the resources allocated to AIDS.
A. (3) Project activities
Below are the project activities that were set to address the project objectives mentioned above: During this period in question, we managed to complete what we had set out to do inspite of some inevitable problems encountered in the process.
· Medical and Palliative care for AIDS Patients
The home care team visited patients at centres and provided treatment to them according to the patients’ complaints and in relation to the National Guidelines in treating AIDS. Patients unable to reach centres were home visited and treated accordingly. Many of the complicated cases were referred for hospital management e.g. Kaposis Sarcoma, Hernia, etc. We have continued to work hand in hand with Dr. Carla from Kitovu Hospital in identifying, treating and follow up of complicated cases. In the process, as she tries to assess the different conditions, gives advice to nurses, patients and caregivers. This strategy has helped to reduce the number of patients referred to hospital.
· Psychological Support/counselling
Counselling services to the PLHA and the caregivers have always been a fundamental tool in the support offered to this target group. This was thoroughly carried out by the home care team together with the community workers enabling many of the clients to live positively. Counselling support benefits not only the infected but also the affected and the community at large. Many clients turn up to acquire knowledge and clarity on their anxiety and those identified to be having pseudo-AIDS and total despair are helped during counselling sessions.
· Home Visiting
During the year, home visiting was especially done to the bed ridden and those clients who fail to turn up at centres several times. Community Workers continuously visited all the clients in their homes for on going counselling and health education. Home visiting promotes solidarity and acceptance of the sick within the family.
· HIV Testing
Nurse/counsellors collect and bring in blood samples from the worried well clients and children for HIV Testing to Kitovu Hospital. Before taking off a blood sample, pre test counselling is done. Results are usually returned after 2 weeks and post-testing counselling is provided.
· Tuberculosis Cases
This year the programme embarked on identifying and treating clients infected with T B within the target areas. This was in response to the growing number of T B cases noticed among HIV/AIDS. (Our concern was not only T B among AIDS clients but also other patients within the target community). The team collects and brings in sputum specimens to Kitovu Hospital for testing after which results are returned and given to the clients on the following visit. If results are positive, treatment is provided there and then. When negative, other samples would be collected after some time to confirm. Otherwise, treatment for other chest infections is provided accordingly.
· Health Education
A variety of topics mainly concerning health and other related issues are provided to the clients, the caregivers and families in general. Many of these topics are repeatedly given to keep the beneficiaries on the run. The following topics were given during this period; T.B awareness; general hygiene management; care for AIDS patients; how to make oral dehydration salts (ORS); balanced diet; HIV/AIDS awareness and prevention; positive living; behaviour change; will making; self reliance; children's and women rights. This is continuously done at centres and in homes during home visits. Community Workers as well provide this kind of education talks at centres before the nursing team arrives and whenever they go for home visiting. They are capacitated to do this work effectively through the different courses and seminars they attend.
· Social Support
Some social needs of many of our clients were met especially those that were crucial and unavoidable i.e. bills for hospitalisation and special treatments, house constructions and repair, material assistance i.e. blankets and soap, food supplements i.e. rice, beans and maize flour.
A. (4). Progress
¨ During the year, the home care team managed to attend to 3008 clients. Of these, 52% were new and 48% were old clients. (27% were male, 61% female and 12% children under 12 years of age). A total of 26,356 visits were done throughout the year.
¨ Many clients report having responded to the symptomatic treatment provided in addition to counselling services. Below is a case study of one of our clients in Bukulula sub-county sharing with us his experience. The names are with held for confidentiality.
Nurse: / When did you join the Programme?David: / In 1991, I was in Kabuwoko Parish by then. It is nine years now.
Nurse: / How did you come to Bukulula then?
David: / In 1995 I was transferred from Kabuwoko because I was at death point. My parents are here and this would make my burial easier if I died from here.
Nurse / How have you survived since then?
David: / When I was brought here, my brother knew that Mobile Programme also operates in this area. So he came and requested the nurses to come and home visit me. The nurses accepted and found me in a critical condition and treated me accordingly. This went on for some months. Then I began regaining my health and since then I have lived to now with few complaints, of course. I am very grateful to the Mobile Programme for the support and care rendered to me and I wish that people with AIDS would know the importance of getting counselling and treatment early. “All I know is that if it were not the Mobile Programme I would be dead by now''.
¨ Doctors who moved out with the Home Care team helped a lot in the identification and treatment of complicated conditions.
¨ The awareness raised on TB and STI in the target area has helped in identifying and treating those affected. In the process, many clients with STI were identified and treated accordingly. Treatment and follow up of identified T B cases was regularly done on a monthly basis in Rakai District and fortnightly in Masaka District. Patients who took their treatment effectively got better. In total, 256 TB tests were done and 61% were negative, 39% positive. (Of these, 62% were female, 32% male and 6% children).