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Integrating paediatric palliative care into home-based care: an evaluation of 3 home-based care projects
Health Systems Trust
The Nelson Mandela Childrens Fund (NMCF) has, through the Goelama Programme since 2002, funded non-governmental organisations to support orphans and vulnerable children. The focus has been on strengthening households and support systems for orphans and vulnerable children (OVC), promoting behaviour change to prevent further spread of HIV, and enhancing integration with local government services. Based on the fact that many children, including orphans, are dying of AIDS, without appropriate palliative care, an expansion of the NMCF Goelama approach is being developed. This is a collaboration between the Diana, Princess of Wales, Memorial Fund, the NMCF and the Hospice Association of South Africa.
Agonising death from terminal illness is an unnecessary tragedy these days. While death is inevitable, the pain can be relieved with easily accessible medication -- but not for those who are dying beyond the reach of doctors or professional nurses.
A United States government fund is to give R35 million over the next five years for Aids care in South African hospices, it was announced today.
Patience and Zimele Mavata founded Ikhaya Lobomi in September 2001 with four beds in a former shebeen (beer hall). Two beds were donated by a nearby community, and the other two were the couple's own. Little by little, more beds, linen, dishes, medication and food were donated. Nine months ago the couple got permission to move the hospice to a bigger building on the premises of the Don McKenzie tuberculosis clinic, just a few kilometres away. They now have 21 beds and, for the first time, separate wards for men and women. When the couple first arrived in the Kwanyuswa valley several years ago, they recognised that the community was suffering from two major problems: they were poor, and lacked information and awareness about HIV/AIDS.
Since 1999, the innovative Bambisanani Project has worked to address the urgent need for home-based AIDS care in some of the most devastated areas of South Africa. The Project is serving as a community mobilization model nationwide and proves that community support is crucial to successful health programs. Half of South African mine and migrant labourers come from an area along the border of KwaZulu-Natal and the Eastern Cape Province. Almost 40% of the residents are unemployed and do not have enough money for basic food and clothing. TB cure rates fall below 20% in some areas and in 2000, 30% of households had a member fall chronically ill. It is here, in one of South Africa's poorest regions, that the Bambisanani Project focuses its efforts. Despite these odds, local communities are working together to demonstrate that all is not lost, and together, they can prevail. Bambisanani provides community support by teaching groups of community members, all nominated by traditional leaders, to become home care supporters and trainers to care for the terminally ill. Today, these home care supporters form a wide-reaching referral network working with local hospice, health centres, and hospitals to identify terminally ill patients and families in need of home care support. Once identified, home care supporters provide families with home care kits with basic supplies to make loved ones comfortable and teach families how to address simple health problems. Families learn how to massage to decrease pain, when to administer TB medicines if needed and how to ensure victims do not develop bedsores. Despite what seems to be a depressing situation, one need only remember that before home care, families had no one to turn to as loved ones died in more pain-and with less dignity. To date, the Project has: · Served a population of more than 50,000 with AIDS care and support · Developed strong partnerships between communities, public agencies, and private companies · Trained 60 home care supporters and increased capacity to care for terminally ill · Identified 500 children in distress and directed them to appropriate support · Supported 255 TB cases, 235 terminally ill cases and 120 HIV/AIDS cases The Bambisanani Project is a partnership between the EQUITY Project, Bristol-Myers Squibb, the Employment Bureau of Africa (TEBA), Gold Fields Ltd, Harmony, Gold Field Ltd, South Coast and Transkei Hospice, Planned Parenthood Association of South Africa (PPASA), Anglo Gold, the National Union of Mineworkers, and the Mineworkers Development Agency. For more information contact Carmen Urdaneta of the EQUITY Project at email@example.com.
Highway Hospice in Durban has prided itself for years on giving care, medical and mental, to those in need, but now it faces the worst financial crisis in its history. Patients like Ephraim Magwaza know there is a place where they can get the attention needed in their last moments, but the hospice itself is financially ill. In the last year they have had to cut their budget by 25 percent, the number of beds by half and have lost 25 percent of their workforce. The financial crisis was compounded by a crime-driven year 2000 during which two vehicles were hijacked, three stolen and the linen cupboard burgled. The hospice's funding comes from donations, trusts and the man on the street. Family used to give R100 in memory of a loved one, now they can barely afford R20. They cannot afford it in today's economic climate, but it has hit us badly, said the General Manager, Lesley Van Zyl. It costs R700 a day to have a patient staying at the Sherwood centre, but R100 for a home-care visit. The hospice has more than 500 home-care patients it needs to look after. The remaining staff at the hospice have not had an increase in more than two years, do not get an end-of-year bonus or perks. They work long hours, facing traumatic medical and social situations. One of the ways around the budget constraints is to open community-based centres. The first centre was opened in Chesterville, with one in Phoenix opened this week. To the hospice, care is more than just a medical term; it is an improvement in the quality of life for patients and families - even at personal cost to the staff. (Source: Independent on Saturday, 16 March 2002)