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 Agency for Co-operation and Research Development (ACORD)

Unravelling the dynamics of HIV/AIDS-related stigma and discrimination: the Role of community-based research
Case Studies of Northern Uganda and Burundi

Angela Hadjipateras

Agency for Co-operation and Research Development (ACORD)

June 2004

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Executive summary

“After two decades…the global AIDS epidemic shows no signs of abating…Among the main reasons…is the persistence of stigma and discrimination against those infected. This outrageous violation of basic human rights drives the disease underground, crippling efforts for prevention and care.” 1

As recognized by UNAIDS and others, ACORD’s own experience over many years of working closely with communities in sub-Saharan Africa to support their efforts to address the far-reaching consequences of HIV/AIDS, has shown that, unless the stigma that still surrounds the disease is tackled, such efforts are doomed to failure. It is this awareness that provided the main impetus for the two country case studies that form the subject of this publication.

Study aims

In line with ACORD’s mission based on the fundamental belief that communities should be the leading actors in the struggle for social justice and equity, the basic premise underlying these initiatives is the view that responses and strategies for tackling stigma and discrimination must be built on communities’ own understanding of the problems and be guided by the solutions they propose. Thus, in addition to identifying the manifestations and consequences of HIV/AIDS-related stigma and discrimination on individuals, families and communities in countries hard hit by the epidemic, an equally, if not more important aim of the research was to engage communities in a process of critical analysis and reflection leading to community-driven action and advocacy for change.

The two country case studies were carried out in Northern Uganda and Burundi as part of ACORD’s work aimed more broadly at promoting sustainable peace and development through supporting peacebuilding and conflict resolution initiatives, as well as working to alleviate poverty and improve the livelihoods of the most vulnerable groups in society. Responding to HIV/AIDS is a fundamental part of the work of ACORD in both countries. Thus, this research was aimed at strengthening ACORD’s work as well as supporting national efforts to address the effects of the HIV/AIDS epidemic.

Study findings

The findings of the research undertaken in both countries bore many similarities. Stigmatising attitudes and discriminatory behaviour were found to pervade all spheres of life from the home, the family, the workplace, the school, health settings and in the community at large. Because HIV is associated with ‘immoral behaviour’ and sexual promiscuity, people with HIV are often blamed for their condition and denied the sympathy and support given to people with other life threatening diseases. Women and girls are disproportionately affected by these forms of victimization which are compounded by gender-based discrimination. People with HIV also experience neglect and lack of care, even within their own homes. They are also frequently excluded from community gatherings and feasts. The children of people living with HIV/AIDS are subjected to cruel teasing at school and excluded from games and social interaction with their peers. These stigmatizing attitudes tend to be internalized by people living with HIV and can have serious adverse consequences on their emotional, as well as physical health. Stigma also deters people from being tested or even using condoms for fear of being ‘branded’ as HIV positive.

Besides being socially excluded and marginalized, both studies revealed that many people living with HIV are systematically denied their basic human rights, such as the right to health, housing, education and employment protection. For example, there were cases of people being turned away from hospitals or health centers and denied treatment on the grounds that it is not worth “wasting scarce beds and medication” on people “condemned to die”. There were also cases reported of employees summarily dismissed or denied access to training and employment opportunities once their HIV status has been discovered. AIDS widows are particularly vulnerable to violations of their inheritance and property rights. Orphans are also frequently denied their right to schooling and their inheritance is sometimes unlawfully appropriated by their adoptive parents.

The research identified the following key factors that contribute to the incidence and perpetuation of stigma and discrimination: ignorance and fear; cultural norms and values; some religious teachings; the absence of legal sanctions; lack of rights awareness; the design of government and NGO programmes; and inaccurate and/or irresponsible media coverage.

Community responses

In both countries, the research process triggered strong responses at the level of communities where the research was carried out, but also within local leadership structures and other groups and organizations involved in responding to HIV/AIDS at the local and national level. In the first place, the research has helped to raise awareness of the problem and has strengthened broad-based commitment to finding ways of addressing it. That in itself, is a critical first step. In terms of strategies identified, the need for increased awareness and access to information was stressed, as also the need for legislation and enforcement mechanisms to promote and defend the rights of people living with HIV/AIDS (PLHAs). The research also highlighted the need to rethink the design and delivery of programmes aimed at supporting PLHAs and their families and carers. Assistance targeted at these groups was found to give rise to resentment, thereby often aggravating the problem of stigma and discrimination and undermining efforts to support them. Thus, awareness-raising and capacity-building should also be directed at policy-makers and programme managers in order to enhance the effectiveness and take-up of both prevention and care services provided. Finally, the importance of challenging gender bias and discrimination that compounds the effects of stigma experienced by women and girls was also stressed.

Key lessons

  • The importance of involving communities in the analysis of the problem and development of responses: Community involvement not only ensures that community perspectives and experiences are reflected in the analysis of the problems, but also enhances the sense of ownership of and hence, commitment to seeing through the responses developed. The use of gender-sensitive participatory methodologies to ensure all groups within communities are represented, in particular, those directly affected – PLHAs and their carers and family members - is a critical precondition.

  • The use of research as a tool of awareness-raising: the research process itself helps to heighten awareness of stigma and discrimination, which is the starting point for attitude and behaviour change.

  • The role of research in mobilizing action: Following on from the research, a number of concrete initiatives have been developed to address the problems. In Uganda, steps were taken to establish a bye-law banning discrimination and in Burundi, a network has been established bringing together local and national NGOs and representatives of PLHA Associations to promote and defend the rights of those infected and affected. These initiatives will in turn help to generate increased awareness thereby creating a self-perpetuating cycle of reflection -> awareness -> action.

As highlighted by these case studies, a comprehensive response is required to address the complex causes and multi-dimensional consequences of stigma and discrimination. Laws to protect the rights of people living with HIV/AIDS are required, but these must be backed up by other measures, such as the provision of accurate, unbiased information to dispel the many myths and stereotypes linked to HIV and AIDS; the greater involvement of people living with the virus in the development and implementation of responses at all levels; support for associations of people living with HIV/AIDS to promote solidarity and mutual help; training for community-based counselors to provide advice and home-based care to patients and their families; increased access to treatment, testing and other services; HIV awarenessraising for teachers, health workers and other service providers, as well as the media, the church and local government officials; and increased collaboration and networking among community-based organizations, national and international agencies to develop complementary and integrated strategies for combating HIV/AIDS-related stigma and discrimination.

  1. Statement by UNFPA Executive Director for World AIDS Day 2003

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