A community health approach to palliative care for HIV and cancer patients in Africa
Thousands of patients in sub-Saharan Africa have incurable diseases, mainly HIV-AIDS and advanced cancer, which causes them and their families great suffering. It is estimated that at least 50% of HIV patients and 80% of cancer patients will suffer from severe pain in the course of the terminal phase of their disease. The scale of palliative care needs for HIV disease and AIDS in Africa outweighs the cancer care needs many times. For example, in one country, Uganda, 20,000 cancer patients need palliative care, while 200,000 AIDS patients need these services1.
A needs assessment; study undertaken recently in Uganda; shows that the distribution of the terminally ill patients is 73% HIV/AIDS, 22% cancer, 3% both and 2% other diseases. The majority of the patients prefer to be cared of at home and, in fact, 87% of the care givers are family members who tend to be very supportive. Among the various needs shared by patients and their caregivers, the major ones are food and welfare. Poverty and sickness combined put the families in a critical situation. Patients experience pain and other symptoms quite often and 65% of them declared them a problem. The main fears expressed by the patients are fear of death and abandonment. The study concludes that the home is the best place to care for the terminally ill. However, present home care systems in Kampala district are not sustainable; they depend heavily on donors and reach a low percentage of the patients. Community participation is minimal with little sense of ownership.
Health promotion and prevention, and the provision of adequate quality treatment are key strategies to address the burden of HIV/AIDS and cancer. However, the first two will take several years to have the expected impact in the population and the latter requires the development of appropriate and accessible health infrastructure and technology for the good quality provision of care.In the meantime thousands of terminal patients can be relieved from their pain and suffering by using low cost approaches and mainly community based strategies. Today, in southern Africa, the provision of palliative care is an urgent, unavoidable humanitarian duty.
Important palliative care initiatives are already underway in Africa and involve both government as well as non government initiatives, supported in many cases by international organizations. These initiatives have produced a solid knowledge base of how non-costly, good quality palliative care can be provided in low resource settings. They rely mainly on networks of the community members, educated and supervised by a palliative care team.
However, there are still important gaps to be bridged in the region. Many countries have not yet considered palliative care a public health problem and therefore it is not included in their health agendas. Several initiatives have developed as "islands of excellence", yet they are not integrated with the country's national health policies, therefore, they have not yet achieved a significant impact on the population of patients. In many countries there are serious impediments to opioid availability, a key element to pain control. Important regional and global health initiatives dealing with related issues have not explicitly considered palliative care among their priorities.
Consequently, there is no doubt that there is a need to advocate for adequate policy development regarding palliative care in the region. In order for initiatives to achieve sustainability and adequate coverage it is essential to promote a public health approach in which comprehensive palliative care programmes are integrated with existing health systems and are tailored to the specific cultural and social contexts of the target populations.
Palliative care is one of the three main priorities of the WHO Programme on Cancer Control (PCC) and is included in the agenda of several other WHO programmes. On 4 December 2000 PCC held a Consultation on Treatment and Palliative Care for HIV Patients with Cancer in Africa, mainly supported by funds from UNAIDS. The resulting guidelines serve as a framework for the management of palliative care in Africa.
The WHO Programme on Cancer Control is developing an initiative to strengthen the development of palliative care in southern African countries in collaboration with the WHO Departments of Care for HIV-AIDS, various relevant governmental and intergovernmental agencies, nongovernmental organization and the WHO Regional Office for Africa (AFRO).
The main goal of this project proposal is to contribute to the improvement of the quality of life for cancer and HIV/AIDS patients in southern African countries by facilitating and strengthening the initiation and development of palliative care programmes with a public health approach that will provide pain relief and holistic care to an increasing proportion of terminal patients.
The principal objectives are:
1. To develop/reinforce palliative care programmes with a public health approach in response to the needs and gaps identified, considering:
- A holistic approach to palliative care, giving special emphasis to pain relief;
- A systemic approach to programme implementation which considers policy development, provision of care, drug availability, training and education in the context of HIV/AIDS and cancer health problems;
- Integration with the existing health system, involving all levels of care with special emphasis on home-based care;
- A team approach at the organizational and care levels;
- The elements for good quality performance: improving access, acceptability, efficiency, effectiveness etc.
2. To advocate for drug availability and policy development among the governments of the participating countries
3. To develop a network among the participating countries that will:
- Promote exchange of information and collaboration
- Advocate for the integration of such programmes into national strategic plans for health and social services.
The countries invited to participate are Botswana, Ethiopia, Uganda, the United Republic of Tanzania, Zimbabwe.
Country Population Millions 2000 (1) Life expectancy at birth (years) 1999 Cancer (3) HIV/AIDS(4) in 1999 Incidence Mortality Adult prevalence rate % People living with Deaths Ethiopia 62.9 42.4 64657 39920 10.63 3,000,000 280,000 Tanzania 35.1 45.0 33409 21002 8.09 1,300,000 140,000 Uganda 23.3 42.1 17058 10504 8.30 820,000 110,000 Zimbabwe 12.6 40.4 13030 8648 25.06 1,500,000 160,000 Bostwana 1.5 39.4 1168 810 35.80 290,000 24,000
Life expectancy at birth (years)
HIV/AIDS(4) in 1999
Adult prevalence rate %
People living with
Products and activities
PHASE I (October 2001-June 2002)
The following main products are expected to be achieved by June 2002: country teams organized for the project; project proposals from each of the countries; and a network of countries related with the project.
WHO and its partners will advocate for drug availability and policy development directly with the concerned governments. The WHO guidelines "Achieving the balance in national opioids control policy" will be used as a reference guide. A concrete plan of action will be developed jointly during this phase with the country teams and policy advisors.
b) Team development
As the project intends to contribute to the development of palliative care with a public health approach, integrated with the existing health systems, team development is essential.
The team organized for the project should gather individuals with technical and political influence that will have the support of government authorities and the community, have motivation and interest to take long term responsibilities in the area of palliative care and be able to convene other key players to be actively involved.
A guide on team building has been elaborated to facilitate this process (A Guide toTeam Development )
c) Situation analysis
The situation analysis undertaken for each country aims:
- To improve the systemic vision of cancer and HIV/AIDS health problems in the country and target area;
- To evaluate the capacity of the health systems in relationship to cancer and HIV/AIDS, in the country and target area, using the existing information.
A guide for the situation analysis has been elaborated so that the study can be developed in a standardized way. (Situation Analysis tool). The guide includes questions on basic information, overall mortality and morbidity, cancer and HIV/AIDS mortality and morbidity, information on health system capacity, general and specific for cancer and HIV/AIDS, and the current palliative care programme.The collection of information will be based on existing information.
The needs assessment study will identify the needs of the patients, families and care givers in a small sample (about 100 cases) of the target area. A needs assessment tool (Need Assessment tool). Will be adapted from the tool provided by Hospice Uganda and applied in a recent study in Kampala.
d) Palliative care project proposals from each country
A framework to assist the project teams in the development of their project proposal will be designed . It will be based on the following principles:
- Public health oriented, keeping a systemic approach to palliative care of HIV/AIDS and cancer patients and tailored to the specific context;
- Guarantee ownership of the project at the local level with wide participation of individuals/organizations involved at the different levels of decision making and implementation;
- Focused in managerial aspects and training issues at the local level;
- Attention to monitoring and evaluation that will consider key indicators such as indicators of effectiveness (quality of life among others), efficiency, accessibility, acceptability, care giversâ competence.
- Training based in problem solving and team learning at the ground level (workplace, community) using distance learning when appropriate; and
- Define pilot areas and develop a stepwise approach to fill in the gaps so that existing resources/initiatives are optimized in a first stage and resource mobilization projects are developed to allow further reinforcement/expansion.
- Workshops will be held to draft project proposals from each country;
- Consensus project proposal which defin objectives, strategies, activities, timetables and organization of issues;
- Reports on situation analyses and draft plans of actions by participating countries;
- Agree on a methodology for assisting the implementation phase;
- Initiation of network and discussion on joint activities;
- Consolidated report on country and network plans of action.
Phase II (2002-2005)
If additional funds are raised, of project proposals from each participating country will be implemented. If insufficient additional funds are made available,existing initiatives will be reinforeced, improving efficiency and effectiveness using a methodology of problem solving and team learning.
Organization and management
The Steering Committee Programme on Cancer Control (PCC) will manage the activity. A Steering Committee will ensure coordination and scientific orientation and will consist of:
- Dr Cecilia Sepulveda, Coordinator of WHO's PCC
- Dr Andreas Ullrich, medical officer WHO's PCC
- Ms Amanda Marlin, Technical Officer of WHO's PCC
- Dr Vincent Habiyambere, WHO's Programme on HIV/AIDS..
- Antonio Filipe, Noncommunicable Diseases, WHO African Regional Office.
- Dr Evelyn Isaacs, Regional Adviser, Care & Support, WHO African Regional Office.
- Dr Anne Merriman, Head Hospice Uganda
- Dr Margaret Borok, University of Zimbabwe
- Dr Inés Salas, University of Santiago, Chile
- Dr David E Joranson, Director of Collaborating Center for Policy and Communications in
- Cancer Care, Wisconsin University, USA.
Country level palliative care teams : will be responsible for developing the project in each country with the assistance of the steering committee. The team should define the roles among its members according to their skills and competencies to develop the specific tasks the project will require. For example for Phase I it is highly desirable that the individual heading the process has experience in this kind of study and can dedicate time and efforts to coordinate the initiative.
Due to the collaborative nature of this project a number of other individuals and organizations are partners in this endeavour including DDC/HIV/AIDS, DNC/Palliative Care, DSD/Health Systems and Essential Drugs from the WHO African Regional Office, WHO’s country offices, WHO palliative care experts, WHO advisors in managerial aspects and training issues, WHO HQ’s Long-Term Care Programme, relevant NGO’s and relevant governmental and intergovernmental agencies.
October 2001 to June 2002
UNAIDS funds (US$ 200,000)
AFRO funds (US$ 30,000)
The amount of funds raised will increase the coverage and will strengthen the sustainability that the palliative care programme can achieve in each country. It is estimated that a minimum of US$ 90,000 ("seed" money) is required for each country for a period of three years in order to support a problem solving and learning approach with focus on optimizing existing resources and capacity building. Full project implementation for each country may involve several times that amount.
An initial evaluation of the project development will be done after Phase I and by the end of 2002. From 2002 onwards the evaluation of the project will consist mainly of a) the analysis of each country evaluation done according to the above mentioned framework for developing the country project proposals and b) the progress of the network.
The initial phase of the project will be considered successful if, by the end of Phase I,
1. The participating countries have:
- Completed team development and developed project proposals according to the needs and gaps identified in their target areas;
- Obtained political support from their governments and some concrete financial support to develop the implementation phase with key activities like accessibility to drugs and training of health care providers;
- Started networking and enhanced collaboration, especially in the areas of policy development, training, educational material and management issues.
2. Partnership among the international organizations involved in the project has been reinforced and new initiatives are envisaged.
By the end of 2002 it is expected that the project will have obtained resources from internal as well as external sources for the implementation phase. It will be considered acceptable if at least "seed" money has been raised; the optimum will be to obtain sufficient funds for full project implementation in the target area.