(2000; 16 pages)
What is currently being done to overcome these challenges?
Examples of current projects initiatives in palliative care.
The Catholic Diocese in Ndola, Zambia
In the late 1980s Zambia developed the new strategy of “home based” care to cope with the increasing number of people with symptomatic HIV disease. This strategy was not confined to medical treatment and nursing care, but took a more comprehensive approach to the needs of individuals, families and communities, However, many of the early projects had limited coverage and were relatively expensive to operate. In 1991 the Catholic Diocese in Ndola, in the Zambian copperbelt, established a comprehensive home care programme for people with HIV disease, which aimed to provide much higher coverage at less expense. The key to its success is the role of the 500 volunteers who offer counselling, social and emotional support, and basic medical and nursing care for people with HIV disease and their families. They also provide links between the local health centres and the community, allowing people with HIV to receive care in their homes rather than as inpatients. HIV education to the communities has helped to change attitudes to PLHA increasing acceptance and tolerance and reducing stigma.
The AIDS Support Organisation (TASO), Uganda
TASO in Uganda was founded in 1987 as a self-help support group, and it is an example of what can be done when people living with HIV/AIDS and their families identify their own needs and spearhead the process of defining the nature of services to meet those needs. TASO began by offering counselling and outpatient clinical care of opportunistic infections to people living with or affected by HIV/AIDS. Soon it became evident that when TASO clients became bed-bound, they were often not receiving good-quality care due to stigma in homes and communities, and the lack of care skills in the homes. TASO started a campaign of AIDS awareness aimed at changing attitudes in communities. At the same time TASO began training and supervision programmes for families and community members in basic home care. People living with or affected by HIV became the driving force of this campaign, sharing their personal experience and advocating “positive living”. Family level income-generation activities were started and linked to church and other community-based organizations. TASO also runs training programmes for counsellors, community carers and community-owned resource persons.
The Mildmay Mission Hospital, London, United Kingdom
Mildmay is a Christian foundation and was the first to set up inpatient and day palliative care services in Europe. It is funded mainly through contracts with the National Health Service together with by donations and grants. It is situated in central London and aims to care for people with HIV without regard to race, religion, culture or lifestyle.
People with HIV may be admitted for rehabilitation, respite or terminal care, or for support while changing drug regimens. The use of the hospice has changed since the use of ARVs became routine for people with HIV in the United Kingdom. Many more patients are now seen for rehabilitation or respite care than for terminal care. Associated services include counselling, referral for hospital outpatient care such as gynaecology and dermatology, social support and support for children. Mildmay has a family care unit and a unit for people with brain impairment, with separate day care centres for children and adults. People who use the centre include men who have sex with men, injecting drug users, and people from Africa now living in London. Mildmay has found that close links with churches and religious groups in the community have helped to raise awareness about HIV and enabled people living with HIV/AIDS to obtain ongoing spiritual support once they are back in their homes.
The Mildmay Centre for AIDS palliative care and international study centre, Kampala, Uganda.
The Mildmay Centre in Uganda was developed as a joint project between the Ugandan Ministry of Health (AIDS control programme), the United Kingdom Department for International Development and Mildmay International, who have a contract to manage the centre for ten years. It was opened to patients in 1998.
The Mildmay Centre was designed to provide specialist outpatient palliative care and rehabilitation for people living with HIV/AIDS, and to serve as a demonstration model for cost-effective care in resource-limited settings. It also provides day and residential training programmes in all aspects of HIV care for health workers, volunteers and carers.
The emphasis is on rehabilitation and the promotion of independence wherever possible. It has a patient-focused team with support from:
• Medical and nursing staff
• Occupational therapist
• Spiritual care
• On-site laboratory services
• On-site pharmacy.
At the Mildmay Children’s Centre in Kampala, children with HIV have free access to the same range of services as at the adult centre. The services are child-friendly, with therapeutic play and counselling. The aim is to meet not only their physical needs but also their emotional needs as many children seen are severely traumatized. Day respite care for orphans with advanced HIV disease is also provided.
Calmette Hospital, Cambodia
The Calmette hospital and a Phnom-Penh military hospital have implemented an innovative treatment and training programme to fight AIDS in the community through education, and to provide a comprehensive response to the medical and psychosocial care needs of the patients it serves. It is now estimated that 200 000 Cambodians are HIV-positive, of whom 30 000 have progressed to AIDS, with an impact that is also growing on military and police forces. Working with Doctors without Borders, the programme has developed a capacity to provide both care, including inpatient and outpatient services, and training for health care providers. As a result, trained physicians have established a pain clinic and provide pain management in these two hospitals. The current project was based on the premise that a response is required which addresses medical and psychosocial needs simultaneously. Treatment focuses particular attention on pain management and responding to symptoms. Psychological and social supports are provided to infants who are orphans. Another primary objective of the project is to provide education and training for clinicians, pharmacists, and family members. Within communities, families and neighbourhoods receive health education and HIV prevention. The system of care has expanded to include ambulatory and home care for patients living with AIDS and cancer.
Sahara Michael’s Core Home, India
Sahara Michael’s Care Home, a nongovernmental organization in India, is pioneering a continuum of care that addresses aspects of HIV/AIDS care lacking in the health service, concentrating on areas that include treatment, training, human rights advocacy, and the development of networks and partnerships. The Care Home, a 16-bed facility, evolved in response to changing disease patterns for HIV/AIDS and the need for care giving of a greater intensity and longer periods. The programme has been serving areas of high need, in resource-constrained settings, since 1978. Funded by the Catholic Relief Organisation, the model of care initiated in 1997 for people living with HIV/AIDS is now being utilized by HIV/AIDS communities throughout India.
The model of care includes care giving, counselling, a nutrition programme, cost viable treatment strategies, crisis care, and training for self and family care provided by a team of professionals and non-professionals. The professional team consists of a consulting physician and nurses. The care staff includes 17 men and women who perform a variety of tasks ranging from autoclaving, cooking and driving to hospital visits. In the next year, the team will be developing an outpatient department for HIV-positive people, counselling which embraces issues that go beyond HIV status, and a systematic training programme for the intricacies of HIV/AIDS care.
The Care Home has a spiritual undercurrent to its programmes and a team with a service-like devotion to care giving. This has fostered an acceptance of HIV/AIDS in local communities and encouraged people everywhere to offer materials and support.
The Positive and Living Squad (PALS) and Kara Counselling and Training Trust (KCTT), Zambia
KCTT and the PALS are closely linked Zambian NGOs, working to provide care and support services for people living with HIV/AIDS. The PALS are a group of people living openly with HIV. They organize a wide range of HIV prevention activities, but also have an important role in supporting other people with HIV when they become sick and families when a loved one dies. For people who are unwell with HIV, having support and understanding from someone who is also infected with HIV is often very helpful. It can lessen the feeling of isolation and help families to see that their problems are not unique. During the time of someone’s last illness and death the PALS often provide practical and material help, including helping with funeral arrangements and helping make plans for dependants. The PALS also have an important advocacy role and are active in fighting discrimination and promoting the rights of widows and dependants.
Among the activities provided by KCTT is a training programme for home care volunteers. Lay volunteers are taught about basic nursing and listening and counselling skills. KCTT also has a day centre where people with HIV can meet and learn skills from an income generation scheme, counselling services and close links with community based care teams. They also provide TB screening and preventive therapy for people with HIV and family counselling for families affected by HIV.
As palliative and supportive care needs are often overlooked, they must be emphasized in national strategic plans. There is also need for coordination with donors to ensure that palliative care is seen as a priority, and resource mobilization is essential to strengthen these efforts.