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II. Methods

This report is based on detailed interviews with dozens of children affected by HIV/AIDS and their caregivers in Kenya, South Africa, and Uganda in June 2005, as well as extensive prior and subsequent research.2  Interviews were conducted in major cities in each country (Nairobi, Johannesburg, and Kampala), as well as in Nyanza Province, Kenya; Kwa-Zulu Natal Province, South Africa; and Mbale District, Uganda.3  Some children related experiences from other provinces or districts than the one in which they resided during the interview.

Evidence of AIDS-affected children’s disadvantage in access to education exists throughout sub-Saharan Africa, and research for this report could have been conducted in any number of countries.  Kenya, South Africa and Uganda were chosen because of the existence of rigorous statistical evidence showing the comparative disadvantage faced by orphans in access to education, the presence of a reliable network of nongovernmental organizations that could assist with the research, and/or previous Human Rights Watch research in these countries on the situation of children affected by AIDS.  The recommendations in this report are directed to these three governments because that is where research was conducted for this report.  Governments of other countries are urged to consider the relevance of the recommendations as well.

For the purposes of this research, Human Rights Watch defined “children affected by AIDS” as individuals under the age of eighteen who (a) are living with HIV/AIDS, (b) have lost one or both parents or guardians to HIV/AIDS, or (c) have one or both parents or guardians suffering chronic illness due to HIV/AIDS.  Children who have lost either one or both parents before age eighteen are considered orphans.  Children may also be affected by HIV/AIDS in other ways than the ones addressed in this report, for example when they are living in families caring for orphans, living in families with a sick relative who is not a parent or guardian, or even living in communities hard-hit by the AIDS epidemic.4

Some children interviewed for this report were eighteen or older when they were interviewed but related experiences they had encountered as children.  All interviewees were of either primary or secondary school age when their parents died or became terminally ill, and it is important to note that governments’ obligations differ with respect to access to primary and secondary education.  The obligation to ensure non-discrimination in access to education, however, applies equally to children (and adults) of all ages.

The testimonies in this report represent a tiny fraction of the overall number of children affected by AIDS in Kenya, South Africa, and Uganda.  Human Rights Watch identified children for this report through HIV/AIDS service organizations in areas heavily affected by the AIDS epidemic.  We did not interview children not known to service providers, street children, or those in the worst and most exploitative environments and thus unreachable.  The bias is such that the testimonies in this report are not representative of the general population of children affected by AIDS, and indeed that the situation of children not interviewed for this report may be worse that what is described in this report.  The continued stigma surrounding HIV/AIDS in many communities, combined with the fact that medical records often do not register HIV/AIDS as a cause of death, made it difficult to confirm HIV/AIDS as a cause of sickness or death of the parents of children interviewed for this report.  However, most children volunteered that HIV/AIDS had been the cause of their parents’ sickness or death, and where they did not, child-care workers known to the children were able to confirm whether HIV/AIDS had been a feature of their situation. 

The interviews conducted for this report focused on AIDS-affected children’s experiences with the formal school system, including barriers to school enrollment and attendance, the impact of parental sickness or death on formal schooling, and the availability of governmental and non-governmental services to address these issues.  Interviews were private and open-ended, with English translation provided by service providers where necessary.  In one case, Human Rights Watch conducted a group interview at the request of a service provider.  The names of all children have been changed in order to protect their privacy.

Human Rights Watch also interviewed parents, caregivers, service providers, and other experts for this report.  We reviewed statistical evidence of AIDS-affected children’s enrollment and attendance in school, as well as other secondary materials such as government policy documents and reports prepared by non-governmental organizations.  We contacted government officials in Kenya, South Africa, Uganda, and the United States, and were granted interviews in most cases.  All documents and interviews referred to in this report are either publicly available or on file at Human Rights Watch.



[2] A full listing of Human Rights Watch’s reports on children affected by HIV/AIDS is available at the end of this report.

[3] A total of sixty-two children and ten caregivers were interviewed for this report, eighteen of them from Kenya, twenty-three from South Africa, and twenty-one from Uganda.  An additional forty-nine interviews were conducted with representatives of non-governmental organizations, schools, government ministries, and international agencies.

[4] See, e.g., Joint United Nations Programme on HIV/AIDS (UNAIDS), United Nations Children’s Fund (UNICEF) and United States Agency for International Development (USAID), Children on the Brink 2004: A Joint Report of New Orphan Estimates and a Framework for Action (July 2004), p. 3.  The term “orphans and other vulnerable children” (OVC) is often used in the context of HIV/AIDS’ impact on children.   “Vulnerable children”  has been defined by international agencies as  “those children whose survival, well-being, or development is threatened by HIV/AIDS” (Children on the Brink, p. 6), “those who are living with HIV/AIDS, those whose parents are sick with HIV/AIDS and, more generally, children who are especially vulnerable because of poverty, discrimination or exclusion, whether as a consequence of HIV/AIDS or not” (UNICEF, Africa’s Orphaned Generations (November 2003), p. 13), and “groups of children that experience negative outcomes, such as loss of their education, morbidity, and malnutrition, at a higher rate than their peers” (World Bank, “OVC Core Definitions,” online: http://info.worldbank.org/etools/docs/library/108875/toolkit/howknow/definitions.htm (retrieved August 9, 2005)).


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