With 250,000 children living with HIV/AIDS and 60,000 babies born every year with the virus, looking after such children and teaching them how to cope is an urgent requirement of any AIDS intervention. Freny Manecksha finds out how Project CHILD is handling this issue in its community-based programmes in and around Mumbai
“I am HIV-positive. But if I eat properly and take my anti-retro viral therapy (ART) drugs every day I can stay healthy,” says young Raju (name changed). He then goes on to explain in simple language what happens in the body when it is affected by the virus and how ART works.
Raju has learnt to understand and handle his disease through the support, counselling and care provided by the Committed Communities Development Trust (CCDT), an organisation in Mumbai that works among the poor living in slums, red-light areas and on pavements.
CCDT’s philosophy is that communities, even the marginalised ones, have the potential and will to participate in their own growth and development. Its first intervention, and also the first of its kind in India, is a home-based care programme for children and families affected with HIV/AIDS. The aim is to provide services that will keep the family together until they become self-reliant. Most developmental and medical agencies working in the field focus on the preventive and awareness angles, and hardly any of them provide the crucial support and care that the affected families need.
Children are particularly vulnerable. According to official estimates there are some 250,000 children in India who are HIV-positive; 60,000 babies are born each year that are infected with the virus.
CCDT’s Project CHILD was initially meant for communities in Kamathipura, Mumbai’s red-light district. But it soon became clear that HIV/AIDS was no longer an illness restricted to women in prostitution, truck drivers and homosexuals. It has affected people from different socio-economic strata and castes. So home-based care programmes were extended to encompass families that were in crisis situations in Mumbai city and the neighbouring suburbs of Navi Mumbai and Thane.
Through a community-based approach and a strongly structured programme, the project addresses the key issues of child development -- nutrition, universal precautions and psychosocial support.
Under the programme, a range of activities is provided. These include home and hospital visits, education and nutritional support and counselling services.
One of the chief objectives of the project is to ensure that the children’s education continues. Each child is given educational material for a year and sponsorship is provided for those who attend private schools. Since many of these children have experienced trauma and emotional distress at home, it is important that they have a sensitive and understanding schooling environment. Sensitisation programmes are taken up with the authorities, school teachers and principals on issues involving children infected or affected by HIV/AIDS.
Though there is still much work to be done, there has been a definite change in attitude since the 1990s, and today there is no discriminate against children with HIV in a majority of municipal schools and in private schools, where some of the more promising students have been placed.
In one particular case the school authorities were made aware of the breathing problems that a young child was experiencing while climbing the stairs to her classroom. They willingly accommodated her in another class situated on the ground floor.
The programme also lays great stress on the proper nutrition of the family, particularly the children. In periods of crisis, CCDT sometimes provides food rations to the family.
It also focuses on income generation and tries to link the women with small-scale industries or helps them to develop skills of their choice. The idea is that if the parents are economically self-reliant, there is no need to institutionalise the children.
Counselling is provided in unconventional settings -- not across a table in an office but in the comfortable surroundings of the home. There is a full-time counsellor who conducts home visits and provides psychosocial support.
Counselling is very important for children after their HIV status has been disclosed to them as it enables them to accept their status with a positive attitude. CCDT does not believe in mandatory testing, but in cases where it has become imperative for the children to undergo testing, there are both pre- and post-test counselling services. The child is told in simple language and by providing inputs suitable to his/her age and maturity, about the HIV virus, how it affects the body and the vital role that proper nutrition and hygiene play in aiding the body’s immune system. The child also learns what ART is, and its effects.
Counselling is also provided to enable a parent to disclose his/her own status since it is ideal if the parent makes the disclosure rather than a third party. Sometimes, innovative ways of disclosure are sought like both parent and children viewing a short film on HIV/AIDS together, or by bringing up pamphlets or messages on HIV/AIDS.
Support groups among children living with AIDS have also been formed. There is a support group of children on ART and during meetings a child makes the presentation to other children on why she or he needs to take ART. In one case a child already on drugs for treatment of tuberculosis was hesitant to begin another drug regime. But after seeing the visible improvement of a child on ART, and listening to what he had to say, he expressed his willingness to begin ART.
Shelter as a safety net
Institutionalising children is not the answer for children affected or infected by HIV, but there are times when it is inevitable. As when parents are too sick to look after the children or when both parents are dead and the extended family refuses to accept the children. CCDT thus started Ashray, a temporary residential centre for children in 1995. Many children experience abuse and see death far too early in their lives. They live in a fragmented world where they are relentlessly confronted with prejudiced views and discriminatory practices. They need a safety net until they can be rehabilitated.
At Ashray, the children are provided the same services as in the home-based care programme while simultaneously efforts are made for their rehabilitation. If a child has some family or caregiver, these are sensitised and efforts are made to integrate the children into the family. In the case of orphans, CCDT becomes the child’s guardian and tries to place the child with a foster family. Currently there are 45 children in the shelter -- 20 girls and 25 boys.
Until two years ago, children at Ashray were provided only a needs-based diagnosis for HIV. They were taken to a hospital and offered the HIV test only when they fell ill. But as paediatric care became more necessary, and should read "since it was known that all the children had been born in a family where one of the parents was HIV positive, it was decided to screen them all.
“This posed huge challenges,” says Dr Mamatha Lala who is consultant paediatrician on HIV/AIDS for CCDT. “The first was the need to comply with the legal requirements. There were many orphans and CCDT had to become the legal guardian of these children so that it could provide the consent. Some 16% of the children had a living parent who was ill and counselling had to be provided to them before consent was sought.”
The next vital step before screening was a mass awareness drive to ensure that no child would feel different from any other. That meant sensitising the cooks, the caregivers and all those who work in the shelter to be aware of the issues, to anticipate any challenges that may crop up and to display sensitivity and maintain client confidentiality.
This was followed by the biggest challenge of all - providing appropriate counselling for the children according to their age. “Here were children who had already seen death. They had just made a new beginning but now they would have to undergo a test to see if they had the same virus as the parent who had died. We had to ensure that we gave them adequate psycho-social support,” says Dr Lala.
Children and ART
ART is not necessary for every child who tests positive. In many instances proper nutrition, taking precautions against risk factors, and keeping opportunistic infections away can keep the child healthy for years. Regular CD4 check-ups monitor the child’s health. However, in cases where the child does require ART it is very important to provide repeated counselling as patient compliance is very necessary. The drugs must be taken at a particular time and treatment is for life.
Thus far, thanks to the counselling and the effort to make the children feel involved in their own well-being, the children have remained very positive and cooperative. Often they will present themselves on their own before the housemothers who administer the dose. Medicines are timed in such a way that they are administered in the shelter and not when attending school.
At Aakar, a residential centre for boys in Lonavla, those on ART take their medicines and register this by ticking off a smiley face.
The visible improvement of children on ART, who were once very ill, has reassured others and added to the positive attitude.
Better awareness for better prevention
Paediatrician Dr Mamatha Lala notes that some 60,000 children are born each year with the HIV virus and that this figure could be brought down by following a better protocol for preventing mother-to-child transmission and by increasing the coverage.
“The government now is providing second-line ART but since perinatal transmission can be prevented, why not provide for it? We need to strengthen prevention programmes,” she says.
In the West, she says, mother-to-child transmission has been brought down to less than two per cent because of proper intervention.
She says that the vast majority of pregnant women in India have no access to centres where screening for HIV is undertaken and that the coverage must be widened so that one can minimise the number of infected newborns.
She also feels that while the present protocol of a single dose of Nevirapine is cheap and easy to administer, it is not the most effective protocol to reduce perinatal transmission.
Like many civil society organisations, CCDT too believes that to raise awareness among the youth, the government must provide sex education in schools so that HIV can be prevented.
One of its interesting projects named Maitree is aimed at empowering children between nine to 18 years to make informed choices on sexual behaviour, reducing risk and contributing to care and support of those living with HIV/AIDS.
Under this project there are two groups of children. One group consists of children who are affected/ infected by HIV/AIDS. The second comprises children from Dahisar, Ketkipada and Dharkadi, where there are large communities of migrants who are at risk of HIV/AIDS.
Through group discussions and workshops the children are informed about what responsible behaviour entails. The project also addresses the problem of stigma in a unique way with both groups coming together and children becoming peer educators.
(Freny Manecksha is a freelance journalist based in Mumbai)
InfoChange News & Features, March 2009