Available care systems. In many developed countries extended family systems have traditionally provided support for orphans. Support systems could falter with the seemingly endless demands made upon them. AIDS, combined with other pressures such as migration, is pushing the extended family system to breaking point in the worst affected communities. Because of HIV/AIDS also the age distribution of a population is affected. In communities with major AIDS epidemics, extended families and communities are adopting strategies to cope with increasing numbers of deaths of adults, recruiting the very old and the very young for childcare. Many children orphaned by AIDS are looked after by their grandparents, who may be in need of health care themselves. The disability or death of a grandparent may leave the situation where there is nobody else in the extended family willing to care for the children. In increasing numbers the eldest child is forced to take on the responsibility of the household providing for his younger siblings. The youngest unaccompanied household was headed by an 11 years old. (UNAIDS)

Psychosocial impact of HIV/AIDS on children.Children's psychosocial distress begins with a parent's illness, because they live with sick relatives in households stressed by the drain on their resources and they are left emotionally and physically vulnerable by the death of one or both parents. A devastating impact on children is when their immediate family environment and support system is challenged through the sickness, disability and premature death from AIDS. A Brazilian study estimated there were 183,000 children whose mothers were HIV-positive. Only 6% of these children had already become orphans, but the great majority had mothers who were alive but suffering from HIV-related illnesses and lacked the strength and support to take full care of their children. The children may be affected because of the reduced ability of infected parents and extended families to sustain their livelihoods and to care for them: they may be removed from their homes, have to leave school to care for their families, or have to work or live in the streets.

Children are not only affected by HIV/AIDS through infection or the loss of a parent. They experience greater poverty as a result of the loss due to AIDS of adult wage earners, farmers and other skilled and contributing household members. These losses affect all of the children in a household and, where infection rates are high, entire communities.

Endangered health conditions. HIV/AIDS has a profound effect on the mortality of infants and children, as a result of intrauterine infection and perinatal transmission.These effects may actually be more severe, however, because there may also be increased mortality among HIV-negative children who live with an HIV-infected parent because their nutrition, health and survival rates may be poorer than for other children. (Hunter, S.; 1998)

The fact that one-third of children may be cared for by someone other than their mother also has serious implications for child health. Developing countries rely upon mothers as the main primary health care workers for child health. Time is spent educating mothers about good child health practices. Elderly and adolescent caregivers may be uninformed about good nutritional practices for young children in their care; the poor education of alternative caregivers limits access to information about symptoms and treatment of active disease, thus putting these children at risk of poor health. With children under two particularly vulnerable to tuberculosis and with increasing poverty and spreading of HIV epidemic, which increases susceptibility to it, there will for instance be a resurgence of adult and paediatric tuberculosis.(Foster, G; 1998)

Violation of child rights. The realisation of the survival and developmental rights of children are affected in obvious ways as family and community resources become strained and overburdened by HIV/AIDS. Children's rights are ignored as family property is taken, siblings are separated, the children suffer physical and sexual abuse, or they become homeless and join the ranks of streetchildren living in extreme hardship and high vulnerability to HIV infections through necessity to exchange sexual favours for food and money. (ICAD)

While generosity and extended family support is often the norm, discrimination and exploitation of affected children is also common. Discrimination may be manifest in small ways, but social isolation of orphaned children is common: relatives had stopped visiting their household following the death of a parent, fathers - or mothers- desert to town and remarry. Often the orphans are discriminated against by the caretakers and the caretaker’s own children. Exploitation finds its way in and orphans are treated differently from others: with excessive workload of domestic chores, relatives taking property, and child labourers. Child labour and the absence of the caretaker may adversely affect children’s education and expose them to injury, exploitation and abuse. (Foster, G. et al; 1997)

Stigmatisation, largely due to incorrect beliefs about HIV transmission, is widespread in day to day life. It was acknowledged by 20% of HIV-affected families in northern Thailand that other children in the area were forbidden to play with theirs. It was also found that parents had lost jobs as a result of AIDS and family enterprises had lost customers. (hivinsite.ucsf.edu)

Major issues, Urgent needs. Contracting HIV exacerbates poverty. Where communities are already below the margins of poverty, the loss of earnings and costs associated with HIV infection and subsequently AIDS can send families to destitution. A Zimbabwean study on cost and quality of community home based care for HIV/AIDS patient revealed a home visit in an urban program was estimated to be between $16-$23, in a rural scheme this was between $38-$42. A large proportion of these costs were not of direct benefit to the patients, as approximately 56-75% of the total cost per home visit was spent getting to the patient. The family costs of caring for a bedridden AIDS patient over a three-month period was estimated to be between Z$556-$841, based on what the families could afford, and actually bought, and not on what they needed. The high costs per home visit may lead to a low frequency of home visits per enrolled AIDS patient, leaving most of the burden of care to the families, spending as much as 2.5-3.5 hours a day on routine patient care. (Hansen, K. et al: 1998) In an analysis of the economic impact of AIDS in Thailand estimations have been made that the annual health care costs for an AIDS patient was equivalent to 30-50% of annual household income of the average Thai family, and 10 times more than is currently spent by families on health. (Danziger, R.; 1994)

The financial impact on the family is substantial and far reaching, economic opportunities are severely constrained, and families whose basic needs are not even being met normally, are further precipitated into poverty. Poverty prevents people from buying simple, but potentially life-saving drugs such as Oral Rehydration Treatment for much less the hi-tech and extremely expensive combinations of therapies that cost over $20,000 a year. This situation is not very different from that of families in the industrialised countries. In the UK, poverty exerts a similar influence. HIV-Affected children tend to live in substandard housing, or be homeless, and are more likely to be poor. (ACTIONAID)

The needs of affected children are clear. (Mukoyogo, M. et al; 1991) There is a basic physical need for food. AIDS diminishes the family’s capacity to grow food or to earn money to buy it even while both parents are alive and the death of a parent exacerbates the situation still further. Shelter is an acute problem. Children are also desperately in need of footwear and clothing.

There is a need for education and vocational skills. Many AIDS orphans are dropping out of primary school or not even starting, because their surviving parents or guardians cannot afford to pay the fees and meet the cost of school uniforms. Children who do manage to complete primary school lack the vocational skills needed to earn decent living and support their younger siblings, they also lack information about how they can look after their own health and how they can protect themselves from AIDS and other STD's.

There is a need for appropriate care. AIDS orphans are often more prone to malnutrition and less likely to receive health care compared to other children. Many people believe that a child whose mother had died of AIDS is also doomed to die of the same cause. Hence when children fall sick, people automatically assume they have AIDS and seek no help, whereas in fact children are dying preventable deaths from malaria, whooping cough, pneumonia, diarrhoea and other minor infections. (Hunter, S.; 1990)

There is a need to mitigate and eradicate the stigmatisation, the exploitation and the abuse. Unscrupulous relatives sometimes succeed in claiming land and other property which orphaned children are legally entitled to inherit from their parents. Although in theory the law is usually on the side of the orphan, in practice the enforcement of the law is very difficult unless the child receives legal assistance.

There is a need for AIDS orphans to acquire the cultural values and behavioural norms necessary for their integration into society, this is extremely difficult when orphaned children live together without adults. There is a need for emotional and psychological support. The trauma of their parents’ protracted illness followed by death leaves them with a profound sense of loss, abandonment and guilt. They therefore have an even greater need for love, affection and sense of security.

Summary