Restoring a normal childhood
By Vidya Kulkarni
Raju (name changed) is delighted with the idea of joining a new school from this academic year. His grandmother is equally happy that he is enrolled in an English medium school. She wants to educate her grandchild as best as his mother, who died of AIDS six years ago, soon after Raju’s birth. Since Raju also tested positive, the grandmother feared that he would never get to lead a normal life like other children. However, hope rekindled when she came in contact with workers of NTP+, who supported her efforts to ensure the well being of her grandson.
NTP+, a network of positive people in Thane district, Maharashtra, reaches out to communities across the district to spread messages of HIV prevention and care. In this UNICEF supported initiative, peer educators associated with the organisation visit communities to create awareness on HIV. As a result of these interactive and informative sessions, people affected and/or infected with HIV, approach the organisation to seek advice.
According to NTP+ workers Anita and Deepak, the care and support needs of HIV infected children often remain unattended due to ignorance of the family members. Both insist that medication is just one part of HIV care and socio-economic issues of the infected children also need to be addressed. NTP+ strives to build a good rapport with infected children and their families, to be able to provide need-based support.
When Anita visited Raju for the first time a year ago she realized that the child had received no medication since four years when he was tested positive. After Raju’s mother died his father abandoned him and his maternal grandparents took him in their custody. They looked after him well, but were not aware of his special needs as a positive child. Anita supported them in carrying important tests in a hospital and ensured that he received timely testing and proper mediation.
Raju suffers from a type of skin disease since birth and has a weak constitution. NTP+ obtained sponsorship for his special nutrition. The grandmother’s expectations for Raju’s future revived as his health improved. The educational support provided by the organisation has fulfilled her wish to enroll Raju in a reputed school, where he would get to socialize freely with his peers, she feels.
Presently NTP+ provides need-based HIV care to over 35 children in the district. The workers teach that a supporting family environment, love and care from family members are essential for a child to cope with the infection. Therefore they strongly recommend home based care for infected children and work to eradicate stigma and discrimination faced by children at the level of family and community.
Anita says, “The child gets neglected at home in case both parents have already expired. The caretakers may not take proper care and don’t always follow required discipline in ensuring timely medication. This is harmful for the child as s/he is completely dependent on adult support for his/ her well being.”
She recounted the case-study of one boy. Once a man visited the Network office with his eight year old grandson, whose parents had committed suicide due to their inability to cope with the stigma and discrimination of being infected. Although the grandparents were willing to take care of the child, they were helpless in the face of family pressure. The boy was ill-treated and not allowed to mix with other children as he too was positive. Therefore the grandfather was looking to put him in a hostel and was ready to pay all expenses.
NTP+ adopted a novel strategy to build community awareness in this instance. After assuring all possible support to the grandfather, the workers visited his community and presented a street play on HIV awareness and initiated discussion with the audience without identifying the affected family. They provided important information on HIV, how it is spread, need for family support to HIV infected and affected people and so on.
This open public dialogue helped to clarify HIV related misconceptions, which is a major cause leading to stigma and discrimination. The community programme led to a change in the behavior of the family members towards the concerned child. He no longer required to be placed in a hostel, as the organisation ensured family support for him.
Although the organisation emphasizes need for family support, it does not undermine the necessity for institutionalized care for HIV infected children, especially if they are orphaned.
As a part of their outreach strategy NTP+ involves positive people in their work as peer educators. The organizational support and orientation empowers these people to come to terms with their positive status while trying to lead a healthy life. As a result they are able to take better care of themselves and their children.