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Homearrow HIV Living with HIV Coping with Challenges in Pediatric HIV Care

Coping with Challenges in Pediatric HIV Care

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By Vidya Kulkarni
Happier moments, Savita with her elder daughter Happier moments, Savita with her elder daughter
For Savita (name changed), a 29 year old woman from Sangli district in Maharashtra, her two daughters are her whole world. “They have given me a reason to live and revitalized my interest in life,” feels the mother, who has pulled herself out of the trauma caused due to her positive status.

Savita found out that she had contracted the HIV virus during her second pregnancy. She had not heard of the infection till then and thought that something terrible is going to happen to her and the baby. To her surprise Savita delivered a healthy baby with no infection as she had received treatment for prevention of parent to child transmission (PPTCT) at the Civil Hospital in Sangli.

With the help of a Sangli based voluntary organisation, Yerla Project Society, Savita could immediately start appropriate treatment for her older three year old daughter, who had tested positive. The counseling equipped her to take care of herself and her daughters and more importantly helped her attain a sense of control over her life.

Now many more children like Savita’s daughters can be assured of timely help for HIV prevention and care, since a collective of stakeholders in Sangli district has determined to zero in on Pediatric HIV care amongst others, under a programme entitled DISHA (District Integrated Strategic HIV/AIDS Action). The programme was launched by UNICEF in partnership with Sangli Zilla Parishad and YSP, as a nodal agency.

“DISHA is a 10–point comprehensive programme addressing all aspects of HIV/AIDS, from awareness to care and support. There is specific focus on children and special activities addressing prevention and care needs of children were initiated since 14th November 2006,” informs Mr. S. Y. Saptsagar, YSP. The significant aspect of the programme is that it involves all stakeholder groups concerned with the issue and thus consolidates experience and expertise necessary for effective execution.

In a recent initiative under DISHA a special camp was held for HIV infected and affected children in May of 2007. The organizers identified 350 children for counseling and testing at the district Civil Hospital. The children belonged to the most vulnerable groups, which means children who are positive and need medication, children having either or both parents’ positive and children involved in high risk working conditions that are prone to sexual abuse.

The camp was helpful to identify and take care of specific treatment and counseling requirements of each child. A proper follow–up will be maintained to keep continuity in the treatment and counseling. A fresh list of children has already been prepared for a second such camp.

Counseling sessions ensure self-help Counseling sessions ensure self–help
Apart from the occasional camps the Civil Hospital has set up a special cell for Pediatric HIV care, which is open on all working days. The service provider team involves a Counselor and a dietician in addition to the team of doctors and technicians. The services include routine investigation, counseling on hygiene and nutrition, supply of multi–vitamin supplements, and other medication. At present 232 children are benefited by the ART treatment.

In addition, the Civil Hospital has also extended its service base to widen coverage. 19 ICTC centers have been set up across the district. In order to facilitate awareness for early detection, 3 testing centers at the level of Primary Health Center (PHC) have been set up on a pilot basis.

Both the health service providers and voluntary organisations agree that medication and clinical care form only one aspect of pediatric HIV care. Camp organizers said, “Sometimes children are physically too weak to benefit from the treatment due to poor drug metabolism. It is hard to maintain continuity of treatment for children from poor families due to irregular visits. Support is available to take care of proper nutrition, travel expenses and other related needs of these children; however, very few are still benefited by it.”

According to YSP workers, “The most difficult part of ensuring pediatric HIV care is to convince parents to get the children tested. In fact, children need to be tested immediately once the HIV status of either or both parents becomes known. However, mostly the adults are themselves in a state of trauma at the sudden discovery of their infection and take time to deal with it. At some level the parents also feel responsible to have passed the infection to their children. In such traumatic situation they are compelled to think that lesser known is better! Therefore they are reluctant for the children’s testing. Our first task is to convince them to do so. Emotional vulnerability of the parents should not come in the way of child’s well being”.

Two voluntary organisations in Sangli have also started hostel accommodations for HIV infected and affected children accommodating 85 children at present. According to YPS, the capacity of these residential services falls too short to its demand. Several other children are already on their waiting list.

Prevention, care and support needs of children are indeed critical. Yet they are neglected. Thankfully Sangli district has made a beginning through a comprehensive and systematic action to address some of the issues involved in pediatric HIV care.





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