The AIDS Pandemic in Uganda: Social Capital and the Role of NGOs in Alleviating the Impact of HIV/AIDS

Abstract

AIDS has a devastating impact on individuals and society. It is defined as Acquired Immune Deficiency Syndrome and it is a condition caused by the Human Immunodeficiency Virus (HIV). This condition occurs when people who have lived with HIV for a long time lose their immunity and become susceptible to various opportunistic infections. AIDS often results in death. At present, there is neither a vaccine against HIV nor a cure for AIDS. Apart from the numerous deaths it causes, HIV/AIDS has other related problems, including increased dependence, deepening poverty and reduced households’ incomes, social discrimination, and depletion of national finances and human resources. Some of these problems have their own implications and often result in other AIDS-related problems; for example, social discrimination, especially of people infected with HIV, may result into stigmatisation, which in turn may prevent them from seeking treatment, care and support for fear of further discrimination. The purpose of this study is to explore the role of non-governmental organisations (NGOs) in alleviating HIV/AIDS-related problems in Uganda. This study argues that the causes of the widespread of HIV are rooted in the social, economic and political conditions of different communities, such as gender relations1, culture, poverty and policies among others. These not only perpetuate the spread of HIV, but also limit the care provided for AIDS patients, minimise the effect of prevention and control approaches, and increase the overall negative impact of HIV/AIDS (Wilson 2004). Thus, this study argues that the challenges of HIV/AIDS cannot be successfully addressed unless issues of gender relations, poverty, etc are dealt with. Thus, in addition to medical approaches, addressing the challenges of HIV/AIDS requires approaches that take into consideration the social, economic and political environment in which people live (Barnett and Whiteside 2002; O'Manique 2004; Seckinelgin 2004). Strengthening social relations and the way people live with others is one way such challenges could be addressed. Thus, this study argues that successful fight against HIV/AIDS by NGOs depends on social relations between individuals, groups and organisations. The importance of social capital in improving people’s welfare and health conditions is well documented (Szreter and Woolcock 2004)2. In this thesis, social capital is considered to be the networks and associated resources. The study argues that networks are embedded with resources which can be utilised to generate benefits that would improve people’s health conditions. The reason for adopting this conceptualisation is that there are many kinds of networks. However, not all networks are embedded with resources that enable cooperative behaviour and facilitation of the transfer of network benefits to individuals and groups. The transfer of different kinds of network benefits from one person to another or from groups and individuals to the community is facilitated by formal and informal interaction between different individuals and groups. Such interaction makes it possible for a social problem such as HIV/AIDS to be addressed. For example, networks and information embedded in them, facilitate communication, social support, psychological counselling and sharing of experiences that benefit the individuals and communities affected by HIV/AIDS. It is for these particular reasons that the study argues that HIV/AIDS-related problems can be alleviated through strengthening social relations between individuals, groups, communities and organisations. There are over 1,000 NGOs, including community based organisations (CBOs), involved in different HIV/AIDS-related activities in Uganda. This study focused on two of these: The AIDS Support Organisation (TASO) and Post Test Club/Philly Lutaaya Initiative (PTC/PLI). These NGOs are engaged in different HIV/AIDS activities in Uganda. These NGOs were purposively selected because of the uniqueness of their activities, which stress strengthening social relations between their members/clients, groups and the community (see 5.4). The study was carried out in the district of Mbarara of Western Uganda, which in 1991 had a prevalence rate of HIV/AIDS of about 24.3%, and in 2001 had a prevalence rate of only about 10.8%. Uganda has in recent years registered marked declines in the HIV/AIDS prevalence rate. The rate declined from about 18% in 1991 to about 6.2% at the end of 2002. Compared to the general situation in Uganda, the trends in prevalence rate in Mbarara district may be representative for the country. This was the major reason3 for selecting Mbarara district as an area for this study. A variety of qualitative and quantitative methods were employed, including interviews, focus group discussions, observations and secondary sources (chapter 3). Data were gathered on a number of variables, including types of networks and frequency of interaction among different categories of people, as well as what they talk about, who they interact with, and the extent of their involvement in NGOs activities. Data were also collected from government officials employed in the district directorate of health. The study answers the following main research questions. (a) What role do HIV/AIDS NGOs4 play in alleviating HIV/AIDS related problems in Uganda? Specifically, the study examines the roles played by TASO and PTC/PLI in fighting HIV/AIDS in the Mbarara district of Western Uganda. In order to answer this question, the main approaches employed by these NGOs have been examined. The thrust of the study is on examining the process by which these NGOs fight HIV/AIDS. The study argues that in order to alleviate the impact of HIV/AIDS, it is necessary that social relations at both individual and community levels be strengthened. (b) What factors influence the performance of NGOs in alleviating the impact of HIV/AIDS in Uganda? How do NGOs feature in government programmes? Does the government play a role in facilitating social capital formation, and consequently in NGO performance in addressing HIV/AIDS’ challenges? In order to answer the above questions, the study examines the structures of NGOs, their relationships with other actors and the overall social and political environment in which they operate. In particular, the way NGOs and the state relate5 to each other in fighting HIV/AIDS is analysed. In Uganda, social relations at family6 and community levels have declined due to HIV/AIDS (Barnett and Whiteside 2002; Kayazze 2002; Marshall and Keough 2004). In addition, the government is under pressure to privatise the public health sector, so its direct involvement in fighting HIV/AIDS is limited to activities emphasising prevention and individualised responses (O'Manique 2004). Prior to the outbreak of AIDS in Uganda, families, neighbours and community were the providers of social, financial and psychological support, and were the safety nets during hard times, such as loss of employment (Kayazze 2002; Keough 2004; Marshall and Keough 2004; Tumwesigye 2003). Similarly, since the government infrastructure and officials were distributed in different parts of the country, this placed them in an ideal position to fight AIDS more successfully, if these facilities are well utilised. I have therefore, argued that synergy between government and HIV/AIDS NGOs is important in the generation of social capital needed for HIV/AIDS mitigation. In this context, I have explored the role of public institutions in facilitating the generation of social capital and consequently the extent to which NGOs alleviate the impact of HIV/AIDS in Uganda. In addition, I have argued that a partnership between government and civil society organisations, including NGOs, is more important in alleviating the impact of HIV/AIDS than individual actors. In order to examine the contributions of the public sector and NGOs in facilitating the development of social capital, the study inquires how social capital is generated and maintained. The answer lies in the NGOs ability to mobilise local social networks at community and family levels. In addition, they are linked to the government, to business organisations and to international donors. These linkages facilitate the mobilisation of finances for their activities. The public sector, on the other hand, plays an important role, for example, in the provision of infrastructure and an environment that facilitates interaction, communication and correspondences between different actors. The role of political leadership, mobilisation of funding and the creation of an enabling environment in which the Non-governmental sector can function and mobilise social capital is also examined. c) To what extent are TASO and PTC/PLI successful in mitigating the impact of HIV/AIDS? This study examines the extent to which social capital is meaningfully utilised in addressing the HIV/AIDS problem in Uganda. It evaluates how successful TASO and PTC/PLI are, in fighting HIV/AIDS. I- Findings and Conclusions The study revealed that TASO and PTC/PLI are engaged in a variety of activities aimed at addressing the HIV/AIDS-related problems. These activities help in bringing clients together and making it possible for them to interact regularly. The activities include formal meetings at the NGOs’ centres and the medical clinics, in which group counselling and discussions about HIV/AIDS are used to raise the issue of HIV/AIDS. Other activities include community outreach programme, drama and music activities. All these activities were found to facilitate interaction and facilitating communication among individuals in organisations and communities, and were effective in addressing the different HIV/AIDS related problems. For example, interactions that takes place at the organisations’ centres and in the community were found to be important in mitigating the problem of stigma and social exclusion. Recreational activities contributed not only to the physical fitness of organisation members, but also shaped character, fostered friendship and, above all, prevented activities that would increase their vulnerability to HIV infection (chapter 6). 11- Does Social Capital Matter? Based on the theoretical discussions (chapter 2) and empirical findings the study argued that there are various perspectives, conceptualisations and wider application of social capital. In relation to alleviating the impact of HIV/AIDS, it was found that social capital does matter for the well-being of people affected with HIV/AIDS. Findings from the study of TASO and PTC/PLI indicate that in spite of limited resources, the scale of operation of NGOs in effective prevention of HIV and mitigation of HIV/AIDS-related problems in Uganda depended on networks and social relations between individuals and groups. Networks were important in fighting HIV-related problems in a number of ways; for example, regular face-to-face interaction between individuals and groups served as sources of knowledge regarding HIV/AIDS. In addition, regular interaction facilitated the transfer of such knowledge from one group or individual to another. Discussions and the sharing of experiences were found to be effective in mitigating stigma and social exclusion, and bridging the gap between people with HIV/AIDS (PWHA) and other members of the community. Regular interaction was also important in addressing the issues of social-culture that facilitate HIV transmission. Hierarchical relationships between individuals and government, between NGOs and other organisations (business, private and not-for-profit), and between government and international donors were revealed to be avenues for the mobilisation of funding for activities such as poverty reduction strategies, education and mobilisation for HIV/AIDS mitigation. On a more general level, the importance of social capital is vital in restructuring the socio-economic environment in which HIV/AIDS thrives. While it is not possible to apply the concept of social capital fully to address HIV/AIDS-related problems in all environments and contexts, the relevance of the concept cannot be ignored, especially in the African context. In this thesis, I have discussed the fact that the spread of HIV/AIDS across Africa was facilitated by more or less similar conditions: a vulnerable economy characterised by poverty and cultural factors such as those which promoted stigma, gender imbalance and the associated marginalisation of women (chapter 4). These factors exist in many African countries, although in different dimensions and forms. Similarly, the policy responses throughout this region were more or less the same, since all nations chose to follow the World Health Organisation (WHO) and the World Bank’s approach. The WHO HIV policy focuses on education, prevention and use of condoms, and the World Bank’s approach focused on debt recovery and required the state to roll-back its support in favour of private initiatives(O'Manique 2004). However, the rates of prevalence of HIV/AIDS varied in these countries, indicating that there are different explanations other than these policies. For example, the study found that the infection rates are high in South Africa, Botswana and Zimbabwe compared to Uganda (see 4.4.1). At the end of 2001, for example, in Zimbabwe, 33% of the adult population was HIV/AIDS infected compared to 5% in Uganda (UNAIDS 2002). The alternative explanation was identified as social capital. For example, it was found that in Uganda there was more open communication about HIV/AIDS than in other countries. It was also found that there was a more positive state-society relation in Uganda than in South Africa. Thus, Effective prevention of HIV in Uganda was found to depend on a combination of preventive measures and increased interaction among different people, and between civil society organisations and government (chapters 6 and 7). Interaction was the avenue for communication, and acquisition of HIV/AIDS-related knowledge and the sharing of experiences between individuals and groups. Networks were found to be channels through which information was processed, discussions were held and experiences about HIV/AIDS were shared by members. In addition to facilitating the sharing of knowledge and experiences by people infected with HIV, networks were found to reduce the cost of conveying messages about HIV/AIDS and transferring HIV/AIDS-based knowledge from individual to individual and to communities. Networks were found to be sources of social, psychological and economic support for people with HIV/AIDS (chapter 8). When compared to the approach of religious or Faith Based Organisations (FBOs), particularly religious fundamentalists8, the network approach of TASO and PTC/PLI was found to have a greater impact on stigma and social discrimination. Religious fundamentalists tended to focus on individuals and morality rather than on issues such as poverty, discrimination and gender, which are important for the spread of HIV/AIDS in Africa in general and Uganda in particular (Barnett and Whiteside 2002; O'Manique 2004). The focus of FBOs emphasises the individual, which heightens blame, social exclusion and stigma instead of mitigating them (see discussion in 7. 4.1). A comparison between Uganda and South Africa (7.8 – 7.8.2) revealed that one of the reasons why South African AIDS policy has failed to achieve the desired results is the gap that exists between government and non-governmental organisations. In Uganda, it was found that political leaders, led by the president, were important in legitimising action and streamlining the flow of HIV/AIDS-related knowledge from government and other actors to the communities. Government involvement in coordinating the various actors involved in HIV/AIDS activities streamlined the work, thereby avoiding duplication and conflicting objectives and programmes. Moreover, the government initiative to incorporate research and treatment in its programmes and negotiations for reduced drug prices, created trust in the political leaders in fighting HIV/AIDS. In South Africa, the situation was different; there was lack of political will with a president opposed to scientific findings about the relationship between HIV and AIDS and willingness of government to provide antiretroviral drugs (ARV) to reduce the suffering of AIDS patients. All these factors provided an enabling environment for the success of interventions in HIV/AIDS in Uganda compared to South Africa. The discussion in this thesis also revealed that the government of Uganda has been instrumental in forging partnerships between government, donors, and NGOs. The involvement of civil society organisations including HIV/AIDS NGOs, religious and faith based organisations, in the HIV/AIDS policy-making process in Uganda was found to foster legitimacy and more effective state-society relations. This involvement was not evident in South Africa, and as a result there was more conflict and collision between civil society organisations and government. The study revealed that the conflict between civil society organisations and government in South Africa hampered the development of a relationship of trust between these two sectors, as well as the flow of information that is necessary for minimising the impact of HIV/AIDS. Thus, the conclusion is that, despite having fewer resources than South Africa, Uganda has managed to be more effective in preventing the spread of HIV/AIDS because of the existence of networks between individuals, groups and government. The study findings confirmed that TASO and PTC/PLI have been successful in addressing the problems of stigmatisation and social exclusion, as well as those related to the increasing number of orphans (chapter 8). The two organisations were found to be successful in providing better social and health care services to their clients and their families. The extension of services to rotating outreach centres in different community, family and home establishments had proved to be an important contribution in the health delivery system9. It was evident that this approach not only enhanced the skills of people in their homes, but also minimised the expenses that would be incurred by patients who travelled long distances to reach to the nearest health units. On the basis of the discussions in the thesis and examples as those discussed above, I therefore, concluded that the activation of social capital is more effective in mitigating the impact of HIV/AIDS than focusing on individuals (chapter 9). In general the study concluded that, despite their limitations, TASO and PTC/PLI have been successful in tackling the various challenges of HIV/AIDS. The Need for Synergy as a Model for Addressing the Impact of HIV/AIDS Synergy implies mutual and reciprocal relationships between government and civil society. This may take the form of either complementarity or embeddedness. Complementarity refers to mutually supportive relationships between public and private actors exemplified in the creation of an enabling environment (Evans 1996; 1996a), while embeddedness refers to the nature and extent of ties connecting citizens and public officials. Such relationships facilitate cooperation and communication between citizens and state officials, and between citizens. This study found that the impact of HIV/AIDS is widespread; for example, in causing death, increasing the number of orphans, and encouraging social discrimination and stigmatization. In view of the magnitude of the HIV/AIDS problem, the study concluded that in order to alleviate the impact of HIV/AIDS successfully, synergy is required between government and various other actors, particularly NGOs. This is because of the comparative advantages possessed by these actors. The study found that both the NGOs and the government recognised that they can play a role in fighting HIV/AIDS and therefore the need to work together in a collaborative manner. Through synergy, it is possible to facilitate personal, intercommunity and other social relations. These social relations are important for fighting HIV/AIDS. The study revealed that TASO and PTC/PLI have done better than the government because they select a small region and are better able to streamline their programmes to achieve their goals. They operate on a small scale and are selective with regard to the types of activities they engage in. Moreover, they facilitate the development of trusting relationships between their members/clients, on the one hand, and between members/clients and officials of the organisations, on the other. They also provide gateways for the flow of HIV/AIDS related knowledge from the organisation to the community through engagement into activities that facilitate community participation. The study also found that the government operates on a wider scale and has an already established physical infrastructure, as well as personnel in different health centres across the country. If utilised, this would facilitate provision of large-scale health services. In addition, the government designs policies and coordinates different actors involved in HIV/AIDS related activities. It also establishes an enabling environment for the functioning of NGOs. Moreover, through its international connections, the government mobilises funding which it uses to support the NGOs and other actors engaged in various HIV/AIDS activities. Apart from these advantages, the government is in position to design and implement nationwide poverty reduction programmes. These programmes can have a positive impact on the spread of HIV and minimising the effect of AIDS. On the basis of the above findings, the study concluded that because of the comparative advantages of both NGOs and Government, synergy between government and NGOs facilitated effective intervention in HIV/AIDS by NGOs. As mentioned it was found for example that NGOs select a small area to work with and they work effectively while the government works with a large area and eventually fails to successfully implement their programmes. Further more, it was found that NGOs are good at mobilising the people; for example, it was found that the use of people infected with HIV/AIDS instead in the delivery of HIV/AIDS messages was more effective since people get the true picture of HIV/AIDS from the stories of people who are the real victims. It was however, found that the government has some comparative advantages over NGOs in for example its ability to negotiate for financial resources from international donors, it obviously has more capacity than NGOs and therefore, the government may be in a position to implement programmes more effectively if the resources it has are well maintained and utilised. The study found that there were three types of networks which characterise NGO operations: bonding, bridging and linking networks. Each of these networks was revealed to have different benefits for individuals, groups and communities affected by HIV/AIDS (see 6.1.1 – 6.1.3). It was concluded, therefore, that no network should be considered as more important than others; rather, networks should be viewed as interdependent when fighting HIV/AIDS (see 9.2.3). III- The Structure of the Thesis The thesis is divided into three parts. Part one, which consists of chapters 1, 2, 3 and 4, discusses the HIV/AIDS problem and the conceptualisation of social capital in relation to a social problem – HIV/AIDS. The objective is to develop a model and a methodology for the analysis of a specific social problem in a particular context such as HIV/AIDS in Uganda. Part two, chapters 5, 6, 7, and 8 considers the process of generating social capital and its effective utilisation by HIV/AIDS to address HIV/AIDS challenges. Actors involved in this process and their relationships to one another are discussed. Part three is composed of chapter 9 and examines the extent to which TASO and PTC/PLI are successful in fighting HIV/AIDS by making conclusions from the study. Introducing the Different Chapters Chapter one introduces the study and provides a general overview. The focus is on the salient issues relating to the increasing impact of HIV/AIDS. The chapter discusses the purpose and the scope of the study. In addition, in this chapter a contextualisation of NGOs response is made. Chapter two presents the general theoretical discussions about social capital: its formation, its meaning and different perspectives on it. The chapter explores different sources of social capital: families, communities, organisations and the state. In addition, it considers the arguments for social capital measurements that can be used in a specific context and when addressing a specific problem -HIV/AIDS. Based on these discussions, an anylytical model is developed, which recognises the role of the state institutions and NGOs in generating social capital - the synergy model. In chapter three, different methodological tools for conducting the study are discussed, as well as the methods used to collect, analyse and present data. This is an empirical study done in Uganda based on two cases involved in fighting HIV/AIDS in Uganda. Because of the vulnerability of people affected with HIV/AIDS, in this chapter ethical issues that must be taken into considerations when doing research on vulnerable groups are also discussed. Chapter four discusses various impacts of HIV/AIDS. The chapter premises that an understanding of these impacts will further our knowledge of the dynamics of HIV/AIDS and contextualises the NGO response. In this chapter, the historical development of HIV/AIDS policy responses in Uganda is also discussed. Chapter five outlines the evolution of HIV/AIDS NGOs in Uganda. In this context, it explores the different explanations of the emergence of HIV/AIDS organisations as a distinct group of NGOs. The formation of such organisations was intended to fill the gaps left by a non-responsive state at a time when society was discriminating against its own people. Having presented the enormous number of HIV/AIDS NGOs in Uganda, the choice of the two cases under investigation is discussed. Chapter six presents the empirical findings regarding the process and approaches employed by NGOs in building social capital in Uganda. By focusing on the two selected HIV/AIDS organisations in this chapter, it is possible to trace this process and how it can be utilised to fight the HIV/AIDS problem. Chapter seven continues the discussion of the process of building social capital. An argument is developed regarding the role of the state institutions in social capital construction in a developing country. I argue that it is the role of the state to provide a favourable environment for the participation of the organisations working with HIV/AIDS. This chapter demonstrates that the relationship between state and other actors particularly the HIV/AIDS NGOs contributed significantly to the revival of the social capital which had declined at community and family levels due to HIV/AIDS. Chapter eight discusses the extent to which TASO and PTC/PLI have alleviated the problem of HIV/AIDS. Data is presented to illustrate how social capital is utilized to achieve these aims. Chapter 9 provides a synthesis of the various findings and conclusions drawn from the study. Some of these findings and conclusions have been mentioned above.