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he Soweto care givers network: Facilitating community participation in palliative care in South Africa
Correspondence Address: DOI: 10.4103/0973-1075.16642 Keywords: community participation, palliative care, primary care, volunteers
Community participation is a concept that has been accepted as essential for the provision of health care for the people. However, the understanding of it has changed and evolved over the last 27 years. In this article, these philosophically different models are discussed and it is suggested that meaningful community participation requires a paradigm shift in the power relations of health care - that utilitarian approaches have been detrimental to palliative care and health care in South Africa. Experiences of the Soweto Care Givers Network in facilitating community participation are discussed. This paper is intended to introduce the reader to the experiences of community participation in palliative care in Soweto, South Africa. To provide context, the evolving understandings and debates on community participation are discussed and a background to health care in South Africa is considered. Finally, some of the current and future challenges for community participation in palliative care are outlined. We hope that this may enrich the debate on community participation in India and other developing countries.
The history of health care provision in South Africa has been one of stark contrasts. During the apartheid regime, the white minority enjoyed advanced medical care, while most of the population did not have access to even basic health care. After the establishment of a democratic and free South Africa in 1994 and the adoption of a new constitution enshrining the right to health care, the government subscribed to the Declaration of Alma Ata and the World Health Organization aims of Health for All. However, even while striving towards equity, many people remain in conditions of poverty with unequal access to health care. HIV/AIDS has become a major threat to this fledgling democracy. South Africa has one of the highest incidences of HIV in the world. Currently, over 11% of the population is HIV infected.[1] AIDS has become the leading cause of death and has contributed to widening the poverty gap. It is decimating families and the social fabric of communities.[2] AIDS is an enormous and growing barrier to our development and development indicators such as life expectancy, poverty indicators, food security, economic growth, infant mortality and gender equality have all been adversely affected by the AIDS pandemic. Palliative care has become more important than ever, yet coverage is poor, and the effectiveness of policies is being questioned. The main challenges for palliative care in South Africa are providing palliative care in AIDS, the growing number of people with cancers and achieving equity in access to care.
The concept of community participation in health became popular after the Declaration of Alma Ata in 1978. The Alma Ata Conference identified primary health care as the key to working towards Health for All . The World Health Organization identified four pillars on which action for Health for All must be based. One of these was community participation - the active involvement of people and the mobilization of societal forces for health development . The other three pillars identified are political and societal commitment, intersectoral cooperation, and systems support.[3] It is hoped that community participation would enable promotion of primary health care by advocacy, social support and empowerment. Over the last quarter of a century, the WHO member states have been grappling with the challenge of translating the principle of community participation into practice. Apparent failure in this regard has generated much debate. Differences in understanding what or who is 'community' and what is 'participation' and how to implement and measure community participation have been debated against the backdrop of a changing world. Jewkes and Murcott[4] have argued that community is construed differently by members and nonmembers, and that the views of the members are often not taken into account. Many have argued that because the community is not homogeneous and can represent diverse and even opposing interests, defining and involving legitimate representatives may be problematic. Thornton and Rampele from South Africa have even questioned the assumption that 'communities' exist.[5] A range of meanings has developed in understanding related concepts - for instance volunteerism, empowerment, decision making, and so on. Some activists from Latin America have advocated that community participation can only be initiated when the community itself demands involvement. Despite a lack of consensus on this issue, community participation has become a prerequisite of many health programmes and donors. Eric Dudley writes, "Participation used to be the rallying cry of radicals; its presence is now effectively obligatory in all policy documents and project proposals. Community participation has won the war of words, but beyond the rhetoric, its success is less evident. Part of the problem is clearly political. True participation is a threat to powerful and vested interests.[6]"
Twenty-five years after the Alma Ata Declaration, the complexity of community participation is beginning to be appreciated. In a review of trends and debates published in 2001 Morgan discusses how two perspectives have dominated. The first is a utilitarian approach adopted by donors or governments to use community resources to offset the costs of providing services; the second is an empowerment tool through which local communities take responsibility for diagnosing and working to solve their own health and development problems.[7] Others have noted that differences in community participation were in emphasis rather than content. In developed countries the emphasis lies in decision making whilst in the developing countries the emphasis is in resource mobilization. Current thinking on community participation recognizes that core to its understanding is understanding the power relations. Rifkin has traced the development of the concept of community participation to the present term of empowerment and the links among empowerment, equity and health outcomes. She argues that the relationship can best be described by using the acronym CHOICE (Capacity-building, Human rights, Organizational Sustainability, Institutional accountability, Contribution and Enabling environment), based on the concept of development as freedom put forward by Nobel Laureate Amartya Sen.[8]
Community participation started in the area of health promotion and has since been applied to many areas of health care. Community participation in home based palliative care has been applied with varying interpretations and has not been unpacked or clearly defined as a concept in developed or developing countries. However, links with the community are integral to the philosophy and delivery of palliative care. Palliative care has, at its core, concepts such as education of families and neighbours in home care provision, patient and family centred holistic care, the patient as part of the palliative team, community volunteers and the concept of total pain relief. These are principles that imply interaction with the community, and palliative care, as an emerging field of health care, often required and still relies on advocacy and pressure groups from the community to promote it. Finally, palliative care services have often been funded by charities and thus have been accountable to the donors or the service users. As such, they have had a unique link to these communities. This is unlike primary health care which has been a statutory service provided by many governments and has most often not been accountable to users.
Community participation and palliative care are undoubtedly important in the area of HIV/AIDS because of the sheer scale of need. In South Africa, the 'utilitarian' approach of community participation has been adopted to use community resources to offset the costs of providing services. The Kassay and Oakley interpretation has been the generally accepted model; a 'collaboration' in which people 'voluntarily, or as a result of some persuasion or incentive, agree to collaborate with an externally determined development project, often by contributing their labour and other resources in return for some expected benefit.[9] I shall argue that this has been detrimental and unworkable in the context of HIV/AIDS and poverty and has allowed the government to abdicate its responsibility. The home-based care policy of the government requires that nongovernment organizations provide the home-based care. The government provides for training in home-based care for lay persons belonging to nongovernmental organizations (outsourced to training NGOs). They also provide the NGOs with a grant to cover the cost of stipends for the 'volunteers'. In theory, the lay caregivers are supervised by retired nurses. The South African government promotes volunteerism as an answer to the demand for home-based caregivers to cope with the rising number of people infected with HIV. To quote a spokesman from the Ministry of Health, Sibani Mngadi. 'We encourage unemployed volunteers, who come from poverty-stricken or AIDS-affected households, to join the community health worker programme. We have recruited about 40 000 health workers across the country, who are paid a minimum stipend of Rand 1000 (about US 167) a month'.[10] The stipend is not a wage (since it is below the national minimum wage as stipulated by the government), and some volunteers in Soweto receive Rand 500 per month or nothing at all. Several problems have arisen in implementing this policy: Case finding is not always easy. Some home-based care (HBC) groups go door-to-door and can meet a frosty reception, mainly because of the stigma. Many HBC groups cannot 'find' patients. There have been reports of some individual patients visited by many groups. The social issues of vulnerable children are a problem, which lay caregivers can identify but still need to refer to professional social services. Assessment for food parcels or grants also requires referral to professional social workers. It is worrisome that the clinical component of care and the professional social care are missing in the majority of HBC programmes. All anti-retroviral therapy and treatment of infections are supposed to happen at the clinics, which is a problem for the bedbound patient. By law, lay caregivers cannot access the medical records and cannot diagnose, prescribe or treat. They also find difficulties in referring patients to the clinic. Their patients are terminally ill and bed bound, so they face the problem of getting prescriptions for their patients. Their activities are thus restricted to bathing and feeding patients and cleaning the house - care which many families already provide. Networking occurs in an informal fashion without transparency or accountability and often relies on personal relationships. Monitoring the activity and standards of the service provided has also been challenging. Many studies have found that the standards of care for HBC services vary hugely around the country. According to a recent study, 'Many South African healthcare NGOs are exploiting volunteers providing home-based care'. The study by the Health Economics and AIDS Research Division (HEARD), of the University of KwaZulu-Natal in the east-coast city of Durban also found that South African home-based care programmes are often inadequately developed and their effectiveness is questionable.[11] Akintola, the author of this report, concluded that 'The health department needs to review primary health care models in the face of HIV/AIDS. It should refine volunteer-based programmes, provide stipends, and assist caregivers to ultimately obtain formal employment. Governments and health departments need to acknowledge that home-based care is not a cheap option'.[11] Akintola's study shows that home-based care, done properly, is not a cheap option, but we believe it are one that we cannot afford not to offer. Costing studies have shown that HBC varies greatly because the standard of care varies greatly. Costing studies are currently underway for our project. It is becoming clear that the cost always exists and is paid for, but the cost is currently being carried by the poor themselves. Grandmothers have sold their sewing machines - sometimes their only source of income - to pay for care of their dying. Avoiding duplication of services, using appropriate technology to improve efficiency, using drugs on the Essential Drugs List (EDL) effectively, and doing research to find more locally appropriate and affordable ways of providing care are some useful strategies. But we cannot escape the fact that the sick (even with AIDS) deserve proper professional care. Volunteers, we believe, can only be people who have an income source and who give of their spare time. The unemployed who are desperately seeking work cannot be pressured or lured into volunteering. If lay caregivers are recognized for the work they do and paid a living wage for it, this job creation will go back into sustaining their community. Thus in our context, community participation has become a euphemism for shifting leadership and responsibility for the provision of health care from the government to an impoverished community. It has become a case of the 'poor looking after the destitute'. The state's social responsibility to its citizens lies in the provision of statutory services of which care of the dying should be one.
Soweto is the largest black township in South Africa. It is situated 25 km outside the industrial powerhouse of Johannesburg and has traditionally supplied cheap labour to the city and the surrounding mines. It has population of 1.2 million, high unemployment rates, and an HIV prevalence of 27% in the sexually active population. The N'doro Palliative Care Project is situated in Soweto. It is a donor-funded project, funded by Development Cooperation Ireland, and also significantly supported by the government. It is based in an academic and government hospital and provides a free palliative care service. Linked to NGOs, government and state services, as well as to academic organizations, this project strives to bring role players together. To this end, the Soweto Care Givers Network was set up in 2001 and brought together many organizations that were involved in home based care. The Soweto Care Givers Network and the N'doro project have taken an empowerment approach rather than the utilitarian approach toward community participation. So the Soweto Care Givers Network invited participation from existing community based organizations, government representatives and other stakeholders. This was not always easy because they represented diverse and sometimes conflicting interests. One of the most difficult issues has been meaningfully involving the most marginalized in the community. Because of illiteracy and generations of disempowerment, we have encountered apathy, unrealistic expectations or silence. In these situations, we have needed to guard against organization hijacking this space for other purposes. This has necessitated work from the grassroots in the broader context of community development and building relationships of mutual trust and respect, as well as listening to their issues (acknowledging that their issues were not always our issues and did not always fit into our narrow definitions of health and palliative care) and working at their pace. This project has sought to involve and empower the community in the following ways: • Through health promotion and information exchange in courses on palliative care, anti-retroviral therapy, AIDS, bereavement and spiritual care. • Through advocacy with NGOs, universities and research institutions, community organizations and faith based organizations. • Through facilitation of intersectoral collaboration between government departments and civil society. • Through involvement in planning, decision making and imposing public accountability. • Through open and active dialogue with community groups, recognizing that AIDS and cancer can be highly stigmatizing illnesses. It is important to acknowledge this because the few people with HIV who have spoken openly can not claim to speak for all people with HIV. I have suggested that the UNAIDS (a World Health Organization body) principle of GIPA (the Greater Involvement of People with HIV) would be more effective in South Africa if it was GICA - the Greater Involvement of Communities with HIV. We need to ascertain whether a network of organizations can be effective in facilitating community participation. In our experience, leaving it up to NGOs and donor funding, whether 'external' or community funded, leads to gaps and duplication. Public debate on governance, leadership and financial aspects of palliative care is urgently required. Partnerships between government and civil society can should not end in NGOs 'rubber stamping' government policies.
The concept of community participation has come a long way since the Alma Ata Declaration. By debating the issues raised here we can evolve a clear conceptual framework for community participation in palliative care. In her paper on community participation, Jewkes concluded that local democracy in health may be more effectively promoted if health policy makers and managers focus their attention on improving the decision-making, accountability, transparency, choice and the rights of redress within existing procedures rather than pursuing what looks more like some holy grail of community control.[4] We would add that another way would be to concentrate on broader issues of community development and poverty alleviation. The two are not necessarily mutually exclusive. De Waal wrote, 'Participation implies equal power relations. This is not just a matter of empowering the community with biomedical knowledge but also about facilitating the role of the community in decision making process regarding health services'.[12] Educating lay persons and mobilizing volunteers is only part of the answer to community participation in palliative care in South Africa. Ensuring a voice and political power to the volunteers, the health care workers, the families, the pressure groups, and other representatives in the community is the challenge. Doing this for the most marginalized in society is an ideal towards which we strive.
Development Cooperation Ireland for funding the N'doro Project.
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