Ubuntu Africa

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Comprehensive Care for HIV Positive Children

HIV/AIDS and Children

An estimated 5.6 million people were living with HIV and AIDS in South Africa in 2009, more than in any other country. It is believed that in 2009, 310,000 South Africans died of AIDS.

Impact on Children and Families

South Africa’s HIV and AIDS epidemic has had a devastating effect on children in a number of ways. There were an estimated 330,000 people under-15 years old living with HIV in 2007, a figure that almost doubled since 2001, according to UN statistics. HIV/AIDS is the leading cause of death in children under the age of 5. In most instances the virus was transmitted from the child’s mother. Consequently, the HIV-infected child is born into a family where the virus may have already had a severe impact on health, income, productivity and the ability to care for each other.

The age bracket that AIDS most heavily targets — younger adults — means it is not uncommon for one or more parents to die from AIDS while their offspring are young. The loss of a parent not only has an immense emotional impact on children but for most families can spell financial hardship. One survey on HIV’s impact on households found that, “80% of the sample would lose more than half their per capita income with the death of the highest income earner, suggesting a lingering and debilitating shock of death.”

There are 1.9 million AIDS orphans in South Africa, and it is estimated that the HIV/AIDS epidemic has created half of the country’s orphans. Another UNAIDS estimate puts the proportion of maternal orphans — those who have lost their mother — orphaned by AIDS to over 70%. Orphans may put pressure on older relatives who become their primary caregivers; they may have to relocate from their familiar neighborhood; and siblings may be split apart, all of which can harm their development. In South Africa, the proportion of orphaned 10-14 year olds attending school is only 80% of the level of non-orphaned children of the same age.

The HIV and AIDS epidemic has left in its wake a population of orphaned or vulnerable children (OVC), many of whom are living with HIV and AIDS themselves. “AIDS is redefining the very meaning of childhood for millions15”, as children living with HIV must deal with the medical, emotional, behavioral, and social effects associated with the infection. Not only are many OVC struggling with the implications of their own medical condition, but are living in a context of bereavement and stress associated with the death of a parent or caregiver, stigma and discrimination, and poverty, a status that is inextricably linked to HIV and AIDS. Children living with HIV and AIDS face medical, cognitive, behavioral, and psychosocial problems as a result of their illness and the context in which they live.

In addition to the inherent medical problems, opportunistic infections, and side-effects associated with HIV and AIDS and treatment, children living with HIV and AIDS are at risk for developing neurological and neuro-developmental impairments. These impairments include specific expressive and receptive language deficits, as well as psychomotor delays. The impact of persistent or intermittent development delays on education, future employment, and social integrations are of increasing importance, as children receiving antiretroviral treatment are surviving into adulthood. Cognitively, children living with HIV and AIDS demonstrate lower overall IQ scores than the norms- a finding reported even in children who are clinically and immunological stable. Studies conducted by a number of NGO’s indicates that even in children who are not infected with HIV, the social stigma of an infected parent or caregiver keeps them from attending school and the precarious family circumstances creates a number of psychological traumas that affect them into adulthood.

Extensive research conducted by UNICEF and other NGOs on the large number of children living with HIV and AIDS in South Africa has found that learning and school performance can be further complicated by behavioral problems, which are often reported in children living with HIV and AIDS. Most commonly observed are impulsivity, hyperactivity, and general conduct problems. The causes of these behavioral difficulties are likely to be multi-factorial, including a difficult family environment, absence of parents, changes in caregivers, poor nutrition, and poverty. The etiology most likely stems from stresses the child – and/or other family members – experiences as a result of living with HIV and AIDS. As a result of such issues, children may perform poorly in school, have strained relationships with peers, or drop out of school altogether.

The high risk for cognitive and behavioral problems in children living with HIV and AIDS is combined with an increased risk for psychosocial impairments, including anxiety and depression. Children may experience anxiety related to their learning difficulties and frustrations associated with school. For older children and adolescents, anxiety may be related to a greater understanding of their illness and/or having a parent or loved one who has died due to an AIDS-related illness.

The circumstances surrounding a chronic illness and death may also predispose a child living with HIV to depression. Most children are unfamiliar with the feelings associated with bereavement. However, the death of a parent or caregiver can have a profound and lasting effect on a child’s psychosocial welfare. Developmental vulnerabilities in children may cause bereavement, anxiety, and guilt to manifest affectively, cognitively, and behaviorally. Addressing complicated and/or unresolved bereavement is a crucial component for any program or intervention targeting children living with HIV and AIDS.

Further complicating the situation for children living with HIV and AIDS and their families is the stigma and discrimination that often accompanies this epidemic. Especially in developing countries, where people living with HIV and AIDS continue to be treated as pariahs, the stigma surrounding the infection causes significant anxiety about disclosing a parent and/or child’s HIV status. Children often keep their positive status from their peers and community members, resulting in stress, marginalization, and feelings of devaluation. Children living with HIV or orphaned as a result of AIDS are often victims of discrimination, resulting in feelings of loss as they continue to retreat from their surroundings and the very real loss of opportunity that comes from being further marginalized by the loss of the person or persons who may have been their only advocate.

While the issue of access to HIV and AIDS treatment has come to the forefront of global health policies, children infected or affected by the HIV epidemic have been passed over in the rush to create access to treatment. Orphaned and vulnerable children require more than simply access to ARVs, they require early interventions to improve their clinical situation and reduce the risk factors commonly associated with emotional and behavioral problems.