Community coping mechanisms and approaches in relation to orphans' care -- what works?

Paper prepared for Aidsnett - gruppen för Lokalsamfunn og Mestring Seminar, Oslo, 16 December 2002
Av: C.Bawa Yamba Community coping mechanisms and approaches in relation to orphans' care -- what works?" Paper prepared for Aidsnett - gruppen för Lokalsamfunn og Mestring Seminar, Oslo, 16 December 2002 C.Bawa Yamba, The Nordic Africa Institute, Uppsala, Sweden Preamble I am expected to talk about community coping mechanisms and approaches to the care of orphans - discussing what works and, presumably, what does not. I am compelled to say something about the fact that communities are now accepted as very important partners in the battle against AIDS. This has not always been the case. Twelve years ago I was involved as a researcher at the Karolinska Institute in Sweden in designing a multi-country project on HIV/AIDS prevention in Africa. It was a multi-disciplinary project with the emphases on social science aspects of the pandemic. We called the project "Community Capacity to Prevent, Manage and Survive HIV/AIDS". An anonymous reviewer, who appraised the project for the funders, criticized the role we attributed to communities. The person said that it was important to recognise that HIV/AIDS was basically a medical problem and the solutions, if any, of managing the syndrome were to be first and foremost medical and scientifically appropriate. The reviewer further said she or he could not understand why were exerted so much effort in talking about "communities" in Africa, which comprised persons with hardly any education and would find it difficult to understand medical aetiologies of disease transmission. How could we expect people be able to play a role in HIV/AIDS prevention without medical guidance? Fortunately the funders were not convinced by such arguments, it was then becoming increasingly clear that sexual behaviour was key to preventions, and of course there was still no cure for the disease. So we got our funds and went on with out work. Some of us felt vindicated when seven years later at the African Regional Conference on STD and HIV/AIDS in Lusaka 1999, speaker after speaker said that the battle against HIV/AIDS would be lost or won in the communities. This little bit of history is only to remind us that it has not always been obvious that communities had anything to contribute to HIV/AIDS prevention and management. We all now agree that communities are important, however, it is not always clear in much of HIV/AIDS research what we mean by communities. The word "community" is often used to denote the people out there in the villages, among whom the problem is located. I will return to this point later. Now back to the task at hand: pointing to strategies for types of orphans care that work and those that do not work is not an easy task. I am certain I would be able to single out one or two models - if one could really regard them as distinct - models, of care for orphans that I have come across, that seems to function in a satisfactory manner. But that is not the same as singling out one approach or a set of approaches as the ones that are likely to be successful a particular society. The truth is that any model or approach must be tailor-made to suit the particular situation and social context in which it is introduced. This is an obvious point but nonetheless worth emphasising. Experience from twelve years of AIDS research has taught me this one lesson: much of the failure of HIV/AIDS prevention is to be blamed on the inappropriateness of the models of prevention in local contexts. The main reason for this being: what may work adequately in one place might turn out to be unsuitable in another place. Nonetheless, there is a way of overcoming this kind of problem. It is that one should always situate the children who are in need of care at the centre. Children who are affected by AIDS, indeed all children who are the targets of intervention of any kind, must be allowed to contribute to the strategies that are expected to improve their life-situation. Again this may sound obvious, but it is actually a difficult strategy. Adults always assume that they are the ones who know what is best for their children. This view is underscored by the fact that adults also believe that they have been through childhood as a stage, and therefore knows what it entails to be a child. These two reasons justify what amounts to the hegemony of age. I n other words, the best interest of the child should require involving the child in determining what is best for children. One of two further caveats before we move on: First, in this presentation I will draw from my own research project on Orphans and Vulnerable Children which dates from 1993 and from the work of some of my colleagues. My objective is to case a comprehensive scope on the problems of children affected by HIV/AIDS than present a scholarly paper on the issue. This is partly because I feel the whole issue to be meaningful must merge research with programming and intervention. One cannot be quite disinterested when one is working with children. Concern and involvement overrides the need for a disinterest analysis of the plight of children. Second, I shall not attempt to provide you with any statistics on the number of orphans, worldwide. This is not because I am an anthropologist, and we as an academic tribe tend to be naïve about counting, but because there are many defects in orphans statistics, how they are collected and who counts as an AIDS orphan, example. More important is to highlight the impact and consequence of orphaning, bearing in mind that the situation described should be extrapolated as being the reality lived by millions of children. I have had some experience of orphans and vulnerable children since about 1993 when I was involved in a study on home based care for persons living with HIV/AIDS for the Global Programme for AIDS. The objective for the study was to assess the cost and impact of various models of HBC so that GPA would be able to produce a policy paper with guidelines on how to establish such services. It must be remembered that at this time some hospitals in places such as Kigali and Kampala and Lusaka were congested. Persons with all kinds of HIV/AIDS related infections occupied over 70% of the hospital beds and it was impossible to deal with occasional accidents, which resulted in the need for hospitalisation. It was during the course of the study that I discovered that children were almost exclusively the ones who took care of the sick adults in many of the households we visited. I started to keep a record of kinds on the children. Where they lived, when they had left school, to which caregivers they would move to when the parents eventually died. That is how my research started. Interviews with Persons Living with HIV/AIDS, on issues such as how they rated care at home with care in the hospital, what were their ideas about good quality of care, and quality of life, etc. My interviews soon came to include the children, on broad themes concerning how they anticipated the consequence of the eventual death of their parents. Most of the children had previously been counselling sessions with the HBC teams and knew that they parents were had a fatal disease. The Zambian Study I will now present some ethnography of orphaning to highlight the characteristic pattern that may well epitomise the fate children orphaned by HIV/AIDS in Africa. My research data contains similar records of children in Uganda and Ghana, countries in which I have worked myself or collaborated with researchers involved in research on orphans. My own project has mainly been located in Zambia. As I have pointed earlier, the study out emerged out of my interest in finding out the consequences of orphaning for children when they parents die of HIV/AIDS. It was therefore not designed from the start as a scientific study, but one that grew organically as an offshoot of the HIV/AIDS problem. Perhaps because of this the data is rich and holistic, and provide possibly much more insight into the situation of children orphans by AIDS than is available from many limited studies on the theme. The time depth also makes it possible to see what happens to children over time, who have to undergo the process of leaving their homes as a result of parental death to be slotted into make turbulent phases over a decade. The main data from my project is from Chiawa district, about 120 kilometres south of Lusaka, which lies on the northern bank of the Zambezi River. Close by is the border town of Chirundu where lorries cross into Zimbabwe or arrive from South Africa into Zambia. At any given day there would be over 100 lorries waiting for custom clearance. According to the drivers, it can take anything between a week and three weeks to get one's documents ready. As a result of this a small but vibrant living community has erupted around the town with drinking bars. Commercial sex work has increased considerably. The local Catholic Hospital, which recently started an HIV/AIDS prevention project reports a high rate conventional STD among the young people, particularly girls between the ages of 15 to 26 who seem to find their livelihood in Chirundu. Things were much different in 1993 when I was involved in the HBC study. The Everyday Situation of Some Orphans In June 1993 I came across three children who were caring for their sick mother. The father had absconded to work in the mines in South Africa and hadn't been heard for nearly six years. My interviews showed that the children had dropped out of school, successively, starting with the girl. The boy dropped out of school later because the mother could neither afford school fees or uniform for the children. But in reality these were not the only reasons. The younger boy who was seven said to me that he was happy to be out of school because he was often teased that his father had died of AIDS. The children called him the "AIDES boy". This made him cry every day, he said. The mother died while we were conducting our interview with the family. Her last wishes were that the children would go to live with grandparents. We helped moved the children to their grandparent. The grandparents were frail and weak and we knew that the children would soon be going through yet another bereavement within a short period of time. Even more distressing was the fact that these grandparents had six other children in the household. Some of them were, we were told, grandchildren. Others were the children of relatives, although the nature of the kinship connected was undefined. In any case what we also gathered was that most of the children had lost their parents (possibly) as a result of AIDS. Four months after this I returned to Zambia I visited the children to give them some presents and books. The children had left, I was told. The grandparents had in the meanwhile died of malaria and the children were now with their maternal uncle and his wife. I visited them in their new home. When I saw the new caregivers, I was again faced with a sense of gloom. It seemed quite obvious that the new caregivers were most probably living with HIV and the man in particular had AIDS related infections. This is a fact that my medical colleague was not any doubt. They had rashes over their body which my colleague thought was Kaposi's Sarcoma, and during about an hours visit they visited the toilet several times. At the time the children had then been living in the new home for some two months. They had three cousins with whom they played. They seemed happy and received much love and tenderness from their aunt and uncle. Here again the oldest of the children, Hazel, was the one who ran the household. She cleaned, cooked and carried water all day long. Three months later and within an interval of two weeks both the new caregivers had died. Several months later the children returned to their original home, joined by three other children, distant, but undefined relatives whom they met at their grand-parents' home. They no longer have access to the land that belonged to their mother. Repeated inquiries did not yet any clarity as to why they children have lost the land that belonged to their parents. However, the children seemed content to live by themselves with the support of the local community. This is one aspect of orphaning that needs more attention by programmers and researcher. We know that orphans endure mental trauma of complex kinds in such situations. Some children even blame themselves for being partly the "cause" of their parents' death. Within the span of just nine months these children had gone through three bereavements. Multiple orphaning is common in many parts of Africa. Children often do not only loose their caregivers one, but several times. Yet is appears to be the case that only loss of parents is focused on when it comes to deaths connected to children. Yet each loss of a caregiver is a form of orphaning to the child. Each loss is yet another blow that shakes the very foundations of the child affected by HIV/AIDS. What such repeated trauma does to children, only psychologists can know. Meanwhile Hazel in 1999 was fourteen had become a mother. The father of her child was a local politician. No of the people in the village thought there was anything wrong with this. They even praised the man who was in his mid-forties for being a good provider. Once in a while he would pass by and give the children some money or a bag of "mealie meal". My colleagues and I however were outraged by the fact that the man had obvious exploited the vulnerability of the orphan child when she was still underage. In this case, Hazel was lucky not to have become infected with anything serious during the encounter. But had not the added burden of being responsible not only for her siblings but a baby as well. I have documented similar cases in Uganda and Ghana but with more tragic consequences, one in which the young orphans were infected by HIV as well. Communities and what they can do? Up to now a great many orphans are still care for by members of the extended family. I believe, however, that in some parts of Africa there has been a disruption of the extended family system when it comes to its ability to provide care and support to its members. I have observed many instances of such disruption in Ghana, and in parts of Zambia. This is, however, a point that sometimes disputed by some of my colleagues. The fact remains, however, that the care of AIDS orphans is increasingly left to non-governmental organisations. I have come across many such instances in Ghana, Kenya, Malawi, Uganda, Zambia and Zimbabwe (Apt & Grieco 1997; Parry, S. 1998; Halldórsdóttir 1999; Nyambedha 2000). I have come across several instances of successful programming for children. I wish to mention two briefly before discussing in some detail a third model that I came across in the course of my work. One that impressed was in Mangochi, about 200 kilometres north of Blantyre, which is said to be the largest community based orphan project in Malawi. Zambia, similarly, applies community-based approaches to supported child headed households (see Situation Analysis of Orphans in Zambia 1999). These community-based projects have sprung up as immediate responses to the AIDS orphans problem. However, except for a few instances, the efforts are small, ad hoc, and uncoordinated. Rarely are they based on evidence from research. I think that is that a problem of such magnitude requires interactive, planned and co-ordinated efforts, involving governments, the private sectors, donor agencies and NGOs. The other that has impressed me is the Earn and Learn model of orphans care in Zimbabwe about which Professor Michael Bourdillon has written a number of papers . This form of care enables children to work on commercial farms while continuing to attend schooling. Although it smack very much of "child labour" from which many would instinctively recoil, there is much to suggest that this form of orphan care very efficient one in the circumstances. It keeps children from off the street, and offers them the opportunity to continue with their schooling despite the loss of their parents. One approach that I always cite, since I was involved in evaluating the project, is the one by Redd Barna in the Masaka district, Uganda, which I visited in 1997 in the course of an assignment by the Norwegian Ministry of Foreign Affair. The project started in 1990 as a relief undertaking to try to help AIDS orphans in one of the most affected districts in the world. It began as a "top-down" programme with many Norwegian staff establishing orphanages and even flying out wooden houses from Norway to be used in these orphanages. They seem to have run into problems because of the way it was originally implemented. For instance, locally there was jealousy from orphans who were not eligible because their parents had died in the war. Those who were in the orphanages were becoming estranged from their communities. The whole process was unsustainable because the people did not own it. Finally after four years it was abandoned and replaced by a community-based development programme. The new approach adopted in 1994 by Redd Barna was to support vulnerable children and groups through community development. This "bottom-up" approach was geared towards empowering communities to be able to identify and address their needs/ problems. Inbuilt in this approach was the issue of sustainability of the structures and programmes initiated by Redd Barna. Virtually all the staff involved in the new approach, were Ugandans. The entry point for RB was the districts. They consulted and involved the district officials in their plans and in the implementation of programmes in their areas of operation. Many of district officials were trained in various community based approaches to enable them to work with the communities effectively. Redd Barna continued to work and facilitate the district to develop its own five-year development plan. Further at the sub-county level Redd Barna, continued to work closely with the local officials and facilitated the development of the sub-county plans. The officials became sensitised about children′s issues and the importance of the social sector in community development. Sub-county action plans for children were also developed by various sub-counties and others are in the process. At the community level, sensitisation about children and development issues was done. The Participatory Rapid Appraisal process of planning at village level was carried out in many villages. The whole process of participatory planning, equipped the communities with skills to identify and prioritise their own problems and to seek ways of solving them from their own resources. Some resources were needed from outside during this process for training and making communities aware of what was possible. Grassroots communities were strengthened by construction and renovation of school buildings. This was done in collaboration with the individual schools, parents and teachers. Schools are now able to attract more children due to reduced fees as a result of Redd Barna. Schools were supported with loans to initiate income generation activities. The funds from these activities were used to assist vulnerable children out of school and also support the needy children in school who could not afford some basics like books, uniforms other scholastic materials. Support and training in income generation was extended to groups (mainly women) in various communities. As a result the women were able to support their families. The Redd Barna plans included the launching of a crucial Micro-Credit Development. This appears to have in a sense empowered the local women involved in the project. If their plans came to fruition it will finally result in the poor women themselves having shares in the bank and owning it. This may be one of the most important long-term plans in the whole of RB work in Uganda. I have not been able to follow up the project. But I imagine that if it continued to be successful it would end up as something but will indirectly benefit the general community. The Redd Barna project was supported by NORAD. I have gone into this case at some length because I see it as a successful institutional care for orphans and because it raises a larger issue, namely that of whether institutional care of orphans is necessary and a good option in Africa. Many of my Africans colleagues I have spoken to over the years are against the idea of institutions. A similar position is common among some of my academic colleagues. There is little doubt that the word institution seems to have become a dirty word in social science discourse. I suspect this is due to the influence of Foucault, who saw institutions as representing oppressive structures that affected the individual in her of his set of social relationships. Power relations are, of course, crucial in this or any other concept of institution(s), and anything that coerces the individual is believed to be bad. I suspect that for such reasons, it is common to come across sociologists and anthropologist who are against the idea of institutionalisation. But I believe not all institutions are bad. Indeed, although I always find in Africa colleagues who wish to remind me that institutions are not an African invention, it is interesting to note that many of those who argue along such lines are themselves often the product of institutions of various kinds. Obviously this background does not appear to have affected their ability to function successfully in life. Boarding schools, missionary facilities, churches; even collectivities of any kind, are forms of institutions. We go wrong when we only see them as entities that oppress the person. Institutions also often organise the provision of needs for their member, and this is vital. Nonetheless, we are reminded that Africans do not consider institutions as appropriate for care of orphans, so it would seem that orphanages are out. What to put in their place? Families and community-based organisations are - we are told - what to go for. That our primarily concern it to strengthen the capacities of families and communities to cope. I can accept the later, but when it comes to the first there is much reason to be clear as to the ramifications of that prescription. What is often the implication is that it amounts to the institutionalisation of the family. Initially the concern was to build institutions where would provide basic care for children in need. But then it was argued that that would mean lack emotional and psychosocial support for children. Instead, the idea was to strengthen the family so that they can provide the psychosocial support required for the family. I think this reflect to current thinking in Sweden for example. One or two Questions that come to mind on the theoretical implication of orphaning I wish to end by raising a number of questions relevant to the theme. What are the consequences of maternal families taking care of orphans? What does this have for culture in some areas, for example where there is the practise of bride wealth? For example in some areas, families invest in daughters because they expect a return in the form of bride price when the girls marry in future. But in a situation where daughters are forces to turn to maternal relatives for care because father has died of HIV/AIDS, who is going to claim the bride wealth? This is one of the hypothetical scenarios that can be extrapolated from situations of large-scale orphaning. In the above situations caregivers may well be less likely to invest in schooling for the daughters. One can envisage a number of other of situations that result in which tensions and contradictions in the prevailing social systems, leading inevitably to social and cultural change. I think therefore that we need to take the social contexts into account when we proposing solutions for orphans and children affected by HIV/AIDS.