Establishing the best solution for a rapid response to problems
HIV and AIDS start to make their presence felt in a big way.
By the year 2000, the full impact of HIV was being felt throughout the community. At this stage, HIV had wrecked its toll and many people who had been infected during the early to late 1990′s were succumbing to the illness – AIDS.
During 2001, dedicated women selflessly walked from house to house, over rough terrain in hot sun or pouring rain, seeking out people who were lying sick and dying at home. However at the end of 2001, the results of an in-situ survey that we conducted, confirmed the need to adopt a “holistic approach” to the impact that HIV and AIDS and poverty was having on our communities. Care-supporters found that they couldn’t operate in an environment where they were tending to patients and then having to leave a home with no income and no food. Care-supporters had to share their own meager supplies with their patients and this was stretching the capacity of the community beyond breaking point. Here are some of their stories
Thus, Thembalethu’s strategy to adopt a holistic approach to the emerging situation was developed in response to the needs identified by our team of care-supporters who work and live in the villages where the reality of AIDS is truly felt. We responded by introducing services that were focused on addressing broader community needs such as sustainable food programs, care for children at risk, skills development and income generating projects, youth empowerment and psycho-social counselling.
We started 2002 under acute pressure as our funding for food distribution came to an end and other promised funding was delayed. This caused much hardship for us all. It was extremely difficult to face those who had become dependent on the program. However, this difficulty forced us to explore alternative methods of feeding and through our research we identified Powermeal – a fortified mealie-meal supplement - which enabled us to offer an economical good quality nutritional food.
To stave off starvation we also started with our home food garden project whereby one garden was sustaining between 8 -10 people often with surplus for selling in the local market.
WALK WITH US 2000-2002
Community needs identified
- The community needed material and psychological support to recover from the “shock” of AIDS
- Primary health services needed to be provided in homes as there was no means to get patients to clinics or hospitals
- The needs extended to the whole region – 34 villages
- Children needed rescuing from starvation. They were the most vulnerable and suffered the most. They lost parents and hundreds were left to fend for themselves in their “homes” which were often mere shelters put together with scraps of plastic or sticks. This gave rise to the phenomenon of “Orphan Headed Homes” (OHH). Children as young as 10 were left to look after their siblings. It was heart-breaking
- Grandmothers, who lost sons and daughters, were left with grandchildren, often as many as 13, to feed in an already poverty stricken region.
- Basic medicines were needed to alleviate physical suffering
- A burial support system was needed as the funeral parlors couldn’t cope with the number of deaths and were too costly for the majority of people to access
- A ground swell of stigmatizing of HIV positive people was growing and children who lost parents were being excluded from society
- A program to educate about HIV was needed
How we met the needs –what we did
- Responding to the reports from care-workers as they tended to patients in their homes, Thembalethu quickly expanded their outreach throughout the Nkomazi by training more care-workers
- Support for Orphan Headed Homes (OHH) started
- Research to find specialist food to supplement the food distribution as funding was difficult to secure for food parcels
- Start our own coffin making “factory” and used our vehicles and drivers for the funerals
- Introduce a program specifically geared to vulnerable children
Beneficiaries, Monitoring and Evaluation
- We engaged a consultant who developed a computer data-base for us to track our services. We implemented a strong activity recording system which provided statistics used as a tool in planning and strategy formulation
- Initially many of the care-workers could not read and write so we assisted by teaching them
- We followed the PSG model for home based care.
- The beneficiaries were the patients, children, and families affected by HIV and AIDS
- Thembalethu was accredited as an official service provider with HW-SETHA (Health & Welfare SETHA)
- By the end of 2002 we were reaching 2,000 people in 12 villages with food distribution twice a month. In keeping with Thembalethu’s mission to empower local residents and in particular the most needy, Vusi D (only 21 year old, and himself an OHH) was appointed the food store manager. This helped him to support his siblings and he was later able to secure a full-time job with the skills he gained.
- We discovered a cost-effective fortified meal (PowerMeal) which had definite positive results on our patients by stopping diarrhea, building up weight and providing vitamins and nutrients.
- The need for HIV prevention programs was identified by the youth as being crucial in the fight against the spread of AIDS. Towards the middle of 2002, four local young teenagers took the initiative and approached us. They requested that we establish a youth program specifically in support for youth affected by HIV and AIDS.
- This was the start of Youth in Action (YiA) – whose motto was ‘Challenged to take control of your own life’.
- During March – June we contributed a series of HIV and AIDS awareness articles in the ‘Newswise’ magazine which was targeted specifically at farm laborers in Kwa-Zulu Natal, Free State, Mpumalanga and Limpopo. The publication reached in excess of 18,000 people monthly.
- We started working under the Goelema Project of the Nelson Mandela’s Childrens Fund.
- We built our first home for children. The New Covenant Church from Nelspruit, along with their sister church in Midrand, sent a delegation of members to build homes for orphans. The 20-odd team camped out for two weeks and went to bed each night stiff and sore from digging foundations and hauling bricks and water!
- During 2002, we organized special seminars such as CANSA (Cancer Association), FAMSA (Family and Marriage Counselling), Music and Dance Theatre (for co-ordinators), TSB food gardens, Eco-Link – trench gardening, a dance therapy workshop sponsered by MTN and we ran
a Strategy Planning Course for co-ordinators and SADC-based Project Support Group Training (PSG) which we hosted in November.
- Management staff attended an international workshop on HIV and AIDS in Venda that focused on cross-border challenges relating to HIV and AIDS. We also attended a workshop in Zambia and contributed significantly to a manual on home-based care which has become an international standard.
- In August we trained a group of 20 care-supporters, lead by Sonto, from Swaziland, and continued to mentor the group for many years.
- In September we started with two home-based care-groups in Maputo, Mozambique. The 40 care-supporters had their work cut out for them as the situation in Mozambique is worse than in South Africa.
- In November all the coordinators and management attended an intensive “Strategic Planning workshop”. This was the first time that many of the team had been treated to a few days in a hotel and they enjoyed the much needed respite from the grim reality back home. Here each group learnt how to set goals and manage their projects and learning a new skill of fabric painting was great fun.
- The HIV and AIDS pandemic, particularly in the early years, created interest from people in many countries anxious to learn about the disease and willing to offer support. During the year, Thembalethu hosted over 30 groups from South Africa and abroad, including UK, USA, Canada, Denmark, Germany and Italy.
Facts and Figures of Interest (as at end of 2002)
- We were caring for 2,400 children at risk
- 170 child headed homes were under our care
- 600 care-givers were trained in child-care
- By the end of 2002 we were handling an average of 55 deaths per month
- Nkomazi care-supporters cared for 900 patients at any one time
- The death of one patient leaves – on average – 3 vulnerable children
- At the end of 2001 we had 90 care-supporters in SA and in 2002 we had 220
WHAT WE LEARNT
During this period we learnt of the true, and frequently hidden, reality of the HIV pandemic. We experienced firsthand the absolute trauma experienced by anyone affected. We felt the pain of mothers who died knowing that their children would be left bereft of any parental care. We acknowledged the amazing burden that was placed on grandmothers who were left with the burden of feeding up to 13 children in one household with NO income whatsoever.
We learnt that in order to tackle the destruction HIV and AIDS left in its wake, we had to offer a more holistic service than just home-based palliative care.
We learnt that we had to expand quickly and urgently into programs caring for all aspects of vulnerable children’s lives and in particular the psycho-social dimension.
We learnt of the challenges of working within budgets set by donors who are not resident in the community and who had demands that were sometimes impossible to meet. Such as providing receipts for taxi rides!
We needed to establish HIV prevention programs and to include training for care-givers (those responsible for orphans) and the community at large about the reality of HIV and AIDS.
We learnt of the incredible level of stress that the care-supporters endured – usually in silence – and recognized that they too needed extra support to help them carry the burden. Read some of their stories here.
We learnt the value of working in close partnership with other donors such as Project Support Group and Nelson Mandela’s Children’s Fund.
We learnt the importance of home based care training and of the benefits of our monthly meetings which brought all the care-supporters together, to share and to have a sense of belonging to a wider community so they didn’t feel isolated and alone.
We learnt the value of bringing spiritual counselling and support in conjunction with palliative care. Hannes Pieters joined us in 2002 and soon became a welcome figure trudging through the villages.