Twenty years into the HIV pandemic, one witnesses a growing concern over the experiences of children. Till almost recently, this attention centered around two groups of children - the infected children (those who are HIV positive) and the affected children (those who have a seropositive family member). The experiences of these children, and interventions required to support them have been the subject of much research, documentation, discussion, program planning and policy making. Contemporaneously, as the understanding of the dynamics and complexities of HIV/AIDS deepens, a more comprehensive view of children’s interface with the pandemic emerges. There is global affirmation that the shadow of the virus extends beyond infected and affected children. All children of the world face a lifetime risk of HIV, because of circumstances such as sexual exploitation and abuse, or simply due to violation of their rights to information, education and services (UNAIDS, 1999).

Literature from around the globe underscores that HIV/AIDS changes the world for children. Children whose parent (s) is/are seropositive experience numerous changes in their lives. The onset of the symptomatic phase implies a change in family roles and relationships and family economy. Household (HH) resources dwindle due to medical expenses and parents’ inability to work. Parents may even be dismissed from work due to their HIV status. Children’s nutrition, education, health and other needs are compromised to save money. Children may have to leave school and either earn or perform HH and/or care giving roles, if there are no other adults in the family to support them. While all these developments cause them psychological distress, this is compounded by having to watch their parent(s) suffer over an extended period of time.

Reluctance on the part of parents to disclose their diagnosis and its fatal nature, add to their child’s confusion. If the HIV diagnosis in the family becomes known in the community, children face prejudice and social exclusion. Friends may come to visit less often and children may be harassed at or denied access to school. Discrimination in accessing health care is also common. That children born to positive mothers do not contract HIV infection is often ignored. Thus, children are at greater risk of dying of preventable diseases and infections because of the mistaken belief that when they become ill it is due to AIDS and there is no point in seeking medical help. Finally, the death of the parent constitutes a very painful event. These various experiences precipitate emotional turmoil in the child, which could leave long-term scars (Hunter & Williamson, undated; UNAIDS, 1999; UNICEF, 1999; UNICEF, 2000)

Children who lose a parent to AIDS are also at risk of losing their property rights, and rights to inheritance, either because of laws that disenfranchise widows and/or because of the acquisitiveness and deceit of the extended family and other vested interests. The resulting poverty and isolation can create a vicious circle, placing these children, especially the girls, at greater risk of contracting HIV themselves (UNAIDS, 1999).

Since HIV may have spread sexually between the parents, children could also be losing a second parent, which worsens their predicament many times over. Following the passing away of both the parents, it is usually the extended family, especially in developing countries, that serves as the social security system. Aunts, uncles and grandparents, who may have little income and who may have counted on the support of the HIV infected relative, may be the ones providing care and support. Fostering of orphans by unrelated families, often by neighbors, is also common. Yet, these families may lack resources for proper care, and hence orphans may be the first to be denied education, adequate nutrition, health care, etc. At the same time, there are also child-headed and children-alone families. This is often following the death of grandparents, where there is nobody else in the extended family willing to care for the children. Such children, especially the older ones who are in-charge of the household, generally drop out of school and find unskilled employment (UNAIDS, 1999).

If a child in the family is infected, parents may shield the knowledge from the well sibling, though the latter are witness to their sibling growing inexplicably weaker. Children who are aware of the illness in a sibling, may realise that they are also losing one or both parents. Behavioural and emotional disturbances in the well sibling are possible (King, 1993).

Positive children undergo considerable physical suffering as the infection plays out its course. HIV infection runs a faster course to AIDS and death in children as compared to adults. Moreover, in developing countries, infected children are at a greater risk of death for a variety of reasons. Many common, inexpensive antibiotics and other medications are not available. Health services are difficult to access. Drugs for rarer HIV associated illnesses have not been included as part of essential drug programmes that supply the world’s poorest hospitals and clinics, and clinical guidelines for pediatric AIDS are less clear than those available for adults. Poverty, which brings with it poor nutrition, unhygienic living conditions and widespread infectious diseases, also forms part of the problem. Moreover, since the infections that positive children die of are similar to those that commonly kill other children, it is sometimes difficult for health workers in these countries, without access to HIV testing equipment, to distinguish positive children from others. As a result, children with HIV fail to receive the special care that they need (UNAIDS, 1999). Older children in this group are bewildered by their recurrent illness and progressive debilitation, especially as they compare themselves to their healthy peers. Their confusion is enhanced because parents do not wish to disclose the diagnosis and its implications to them.

The response to children’s experiences with HIV/AIDS has been fragmented and piecemeal, lagging behind those for adults. Quite often, this lacuna is not due to lack of concern, but because of limited understanding of the various issues involved. Addressing the children-HIV/AIDS interface calls for a multi-pronged, holistic approach that operates simultaneously at micro and macro levels.

The need for a children-HIV/AIDS policy in Maharashtra

India has some of the largest numbers of HIV infected people in the world, second only to South Africa. The official Indian estimate puts the figure at 3.5 million (Jain, 2000), though this is believed to be a gross underestimate (Aegis, 2000). Within the country, Maharashtra has among the highest number of AIDS cases (NACO, 2000), with microlevel studies highlighting the growing incidence of seropositivity among married, monogamous women, housewives and women attending ante-natal clinics (Gangakhedkar, Bentley, Divekar, Gadkari, Mehendale, Shepherd, Bollinger & Quinn, 1997; Gogate, 1998; Solomon, Kumaraswamy, Ganesh & Amalraj, 1998). There is thus a strong basis for inferring the high and increasing rate of pediatric HIV/AIDS cases (infected children) and the scale of impact on children even if they are seronegative (affected children). Moreover, India’s sociocultural environment makes all children vulnerable to HIV infection. There are numerous risk factors intricately linked to social and cultural aspects of life that directly and indirectly facilitate HIV transmission among children. These include migration, increasing urbanization, poverty, illiteracy, displacement of people, subordinate status of women, changing family patterns, growing consumerism, uncensored media exposure, substance abuse, unsafe sexual practices, irregularities in blood supply services, child abuse and child sexual abuse. Inadequate access to health information and services affects the ability of the population, especially those at risk, to protect themselves. Primary prevention activities, aimed at controlling the spread of HIV/AIDS, are totally inadequate in content, volume, and orientation, and leave much to be desired in terms of effectiveness (Aggrawal, & Indrayan, 1997; Godwin, 1997 & 1998; Joshi & Rao, 1999; Ramasubban, 1998; Virani, 2000).

While Maharashtra State AIDS Control Society (2001) puts the number of HIV cases for the age group 0 to 14 years for 1999-2000 at 515, and the number of AIDS cases for the same age group as 139 from 1986 to 2000, experts in the field opine that these figures represent underestimations, and in reality, there are many, many more infected/affected/at-risk children, facing a plethora of complicated problems that require urgent attention.

Despite the urgency of the situation, Maharashtra not only lacks a policy on children in the context of HIV/AIDS, but even the state of services available for this group is dismal. Discussions with professionals working in the field point out that government services are essentially in the area of primary prevention through schools and colleges. These programmes are largely conducted by medical personnel who are unable to relate to the target group, because of the clinical terminology and pedagogy employed. Further, these programmes begin only from Std 8, whereas children have queries and require guidance from an earlier age. Also, by this stage, many children have already dropped out of school. Government hospitals provide clinical care and medical services, with handful of them in Mumbai having special services for pregnant HIV positive women and infected children, sometimes with AZT treatment. Attempts to regulate blood banks, blood supply and related issues have also been made by the central government, and a national blood policy is on the cards.

The response from the voluntary sector is a little more encouraging, but here too, the focus is more on education and awareness rather than on support and rehabilitation. NGO primary prevention endeavors in HIV/AIDS target various groups of children (e.g., street children), as well as other parties that influence the lives of children (e.g., commercial sex workers). Support and rehabilitation are being provided by very few NGOs and this too is largely in the form of institutional care for children, with admission criteria in terms of age, gender, etc. Not only do siblings get split up in the process but also this form of intervention does not equip children to face the real world. Moreover, when there is an age limit then once children have crossed a particular age, placing them in another institution is difficult either because of biases against HIV/AIDS or shortage of space. Institutions thus do not offer a feasible solution since the demand far outweighs the supply. Yet, at the present moment, they are the only option. There are just a couple of NGOs in the state working towards community based rehabilitation of children, with psychotherapeutic inputs for children through individual, group and family counseling to help them resolve their deep-seated emotional conflicts and prepare them for the future. Indeed, a large number of organisations in the voluntary sector have washed their hands off support and rehabilitation work in the context of HIV/AIDS. Thus, it is not surprising to find institutions inquiring about the serostatus of prospective entrants and refusing to admit those who are positive as well as to observe them referring all such cases to the few NGOs that continue to provide services in this area. A few NGOs are also involved in awareness and education programmes in schools, services for street children and special testing services for children.

A tremendous amount of work therefore needs to be done to serve the interests of children. The formulation of a policy on the lines elucidated below serves as an appropriate means to initiate the process.

Policy for children in the context of HIV/AIDS

Forthright commitment at the highest political level is a vital first step in dealing effectively with the AIDS crisis. Through visible and influential leadership, societies can overcome the fear and stigma associated with HIV infection. The need for resources must be underscored as, it is only by investing in poor communities that the challenge of AIDS can be met, since the virus disproportionately affects the poorest and most disadvantaged in developing countries. While governments need to spend more on these communities, they can also assist the latter by allocating higher percentages of existing resources to basic social services such as education, primary health care, nutrition and low cost water and sanitation (UNICEF, 1999).

Since AIDS has wide ranging effects on various areas of a country, coping with its impact requires the co-operation of many sectors. It is imperative that policies, technical support, information campaigns, and health and social services be co-coordinated through a central and high-level body to ensure accountability and continuity (UNICEF, 1999).

Specific to children, education and empowerment of children, along with promotion of their rights, are believed to be the key solution. Adhering to “The rights of the child in the context of HIV/AIDS” as listed by WHO/GPA (1995) leads the way. Changes in the existing social order, in areas such as sub-ordination of women, exploitation of the lower income groups, are also imperative, if a long-term and sustainable solution to the children-HIV/AIDS interface is to be achieved. Interventions therefore cannot remain only at the level of children, but must touch all spheres of society.

Education and awareness programmes targeting children at all levels and in all contexts are indispensable. Focusing on reproduction, sexuality, HIV/AIDS, lifestyles, substance abuse, life skills, legal rights and etc. interventions should begin in schools at early stages, as many children who drop out at mid-school level do not get covered at all. Nonetheless, to be true to the cause of children, these programmes must be taken beyond the school set-up to street children, children in detention, refugee children and other such groups.

Children with positive parents need special attention. As the infection progresses into the symptomatic phase and alters various aspects of family life, children notice the changes in their immediate contexts. Parents tend to downplay these developments and refuse to answer children’s questions, adding to their turmoil. Children need reassurance and guidance to cope with their confusion and pain. In order to provide this, parents must be sensitized to the need for, and trained to, deal with the situation, whether or not they wish to disclose the true nature of the problem.

As things worsen in the household, children assume family roles and responsibilities. Losing out on education, and skill training and development, and therefore long-term self-reliance, is the primary outcome. If children’s long term interests are to be taken care of, the household economy and family care giving must be made the focus of intervention, and assistance programmes in these areas devised.

The absence and/or lack of willingness of other adults in the household or family to take on the caregiver role results in children taking on the responsibility. Guidance to child caregivers about the nature and course of the infection, precautions, dealing with emergencies, and so on, is significant in helping them to provide appropriate care and to perceive the care receiver realistically. Children should also be coached as to whom to contact in case of emergencies, or situations they are unable to handle.

The provision of emotional support to help children deal with parents’ progressive debilitation, impending death, and actual passing away, is of utmost importance in ensuring adjustment and adaptation. This help should continue till the child has been able to make the transition.

The surviving spouse and other adults in the household and family tend to hide the fact of death, or shy away, from discussing it with the child, in the belief that such topics will precipitate anxiety, fear, pain and confusion in the latter. However, it is this failure to communicate on the topic that causes more problems. Children should be informed (the content and manner of which depends on their cognitive level) and helped through this difficult phase.