Pune: In a first-of-its-kind research conducted by KEM Hospital and Research Center (KEMHRC) on HIV (Human Immunodeficiency Virus) positive children, who got the transmission through their mothers, it was found that 80 to 85 per cent children were not informed by their parents that they are HIV positive.
Around 150 boys and girls, aged between 10 to 24 years, from across various parts of the State were included in this research.
The research also highlighted that these children did not get proper information about their condition from their parents. Their only source of information came through the antiretroviral therapy (ART) centre where they received treatment.
The research further highlighted that around 60 to 62 per cent parents did not find it important to explain to the children their condition.
Speaking to Sakal Times, Varsha Tol, Principal Investigator of the research, said that under the prevention of mother to baby initiative by the government, many children are born HIV negative, however, there are no awareness programmes for those who are born positive.
“Many of the children have already lost one of their parents to HIV. Around 70 per cent children, who participated in the research, have only one parent. These young boys and girls have simple questions that no one answers. Like what is their life span? What profession can they choose? Can they have a family? And for these, they need assistance from someone, preferably their parent as it instills confidence in them,” said Tol.
She further mentioned that the ART treatment results in stunted growth of children. “They often question why their height and weight is not like others of their age. It is important to make them understand the reason for this,” said Tol.
“These children also lack scientific knowledge of the disease. In such a scenario, giving them proper care and guidance is important. During the research, the children also shared that they should be told about their condition by the parents and medical counsellor at the age of 9 to 10 years, as this is the time that the children can understand better,” expressed Tol.
Speaking to Sakal Times, Dr Laila Garda, Director Research of KEMHRC, said that there is a large group of adolescents now, who are HIV positive, with various needs.
“There is a lot of confusion at this age. When they come to know their HIV status, it is shocking to them. It takes them a lot of time to understand that they are not at fault and neither is their mother. However, they should understand their status and live with it,” said Garda.
She further added that peers can play a very important role as they understand these children better. “It is a good strategy to take help from peers and use them to guide the children. There is a lot of stigma related to HIV. However, today, it is possible to live a normal life,” said Garda.