According to the National AIDS Control Organisation (NACO), India has 5.2 million HIV-positive people and an HIV-prevalence of 0.9 in adults – about the same as the global average. However, India’s epidemic is concentrated in some 200 districts located in six of the country’s 28 states - Andhra Pradesh, Karnataka, Maharashtra, Manipur, Nagaland and Tamil Nadu – where HIV-prevalence is more than one percent.
There is inconclusive data regarding children infected with HIV/AIDS in India - estimates range from 50,000 to 300,000. The numbers of children who have either one or both parents living with HIV/AIDS or have been orphaned by AIDS will likely place the number of children affected at 50 times these estimates.
The research study, coordinated by UNICEF in association with NACO and the Ministry of Women and Child Development, goal was to examine if children affected by HIV/AIDS are excluded from services and benefits that are available to other children in their communities – including education, health care and the support of their extended families and communities, to assess the nature and severity of such barriers to services and the steps that can be taken to overcome them. Removing such barriers to mainstream services could material benefit a large portion of children affected by HIV/AIDS and reduce the number of children requiring targeted interventions.
The qualitative study was conducted in two phases that involved focus group discussions with service consumers and key informant interviews with service providers. This report is the synthesis of the reports submitted by five research teams in the high prevalence states, with the exception of Manipur. Research was conducted at 45 separate sites using a common methodology.
The report found that HIV/AIDS affected children are treated differently than other children and face various types of exclusion, some of which are self-imposed by themselves or their caregivers. They are excluded from family and community events and are often shunned, teased and ignored within their homes and in their communities. Children affected by HIV/AIDS are also more likely to be mistreated by teachers: they are made to sit separately, receive less attention and sometimes are refused admittance. Similar barriers are experienced when trying to access health services. Affected children were also found to face discrimination in the distribution of food aid and other community welfare services.
Exclusion of HIV/AIDS affected children was mainly attributed to a general fear of HIV/AIDS, the assumption that children with HIV-positive parents are also HIV-positive and that the virus can be contracted through casual contact. The report also found that the best way to overcome barriers to services for HIV/AIDS affected children is to raise the general awareness level of HIV/AIDS and how it is transmitted among communities and service providers, to eliminate the notion among general society that HIV/AIDS affected children present a public health risk, and to raise awareness of the rights of children affected by HIV/AIDS and provide them with an avenue to seek redress for discrimination.
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