Study on understanding the role of disclosure as a facilitating tool towards treatment adherence among children living with HIV in Namakkal District By Buds of Christ Charitable Trust Background: Disclosure has been a heavy debatable topic among programme implementers, especially disclosure of status to children. When it comes to treatment for HIV and AIDS, adherence is a very important fact. In our work with adults, it has been observed that disclosure plays a major role in treatment and its adherence. Even among adults, there are some who take treatment process very casually resulting in drastic health conditions. In our work with children living with HIV, disclosure has been found an effective means in enabling children to be more responsible over their health status. In order to ascertain the fact that disclosure has a strong influence in treatment adherence, a rapid study was done among 10 children living with HIV, to use the findings to encourage other families on disclosure. As the target group includes both orphans and semi-orphans, case studies were carefully chosen to include both the representations to understand the aspect of disclosure better. The 10 case studies were children living with HIV from Tiruchengode block, Namakkal district and mostly children who have been part of our treatment education workshop. These children were chosen, one that rapport has been built with children and families and second, disclosure being a sensitive topic, trust plays a major role. So the study was done only in the second quarter of our project to get complete details around disclosure from the care taker’s perspective and children’s perspective. The findings are enumerated below: CHILDREN’S PERSPECTIVES: Knowledge of the status: All the children agreed that status should be known to the individual, especially when the person/child starts treatment. Few children also expressed that while the status is told to the child, it is good for the parent or the care taker to advice the child, not to express the status elsewhere. I had gone and told my status to my friends at school. Then I was 10 years old, so they did not play nor talk with me. At that time, I did not know the seriousness of it. After that I have been careful. Now that we have shifted our house, I am in a different school and nobody knows our status. Age in knowing the status: Children expressed that the definition of which age depends on each individual child. Two out of the 10 had come to know around seven as they had started treatment at a very
early age, while the other children had come to know around 12 and 13 years. Most of the children had learnt about their status from the care taker of the family. In two cases, because of one of the parent’s death, the status was later revealed to the child. “I came to know my status, when my mother died. I was taken away by my mother after my father’s death. Then within 3 years, she also died and was brought back to my paternal grandparents. Then I came to know my status. The entire village also came to know my status, but nobody treats me different” “I came to know my status on seeing my own medical records. My parents did not reveal the status to me. I was curious because I was asked to start treatment. So I opened and learnt my status. At that time it was a shock to me, as I was not prepared for it. I was then 14 years and the only one living with HIV in my family.” Advantages of knowing the status: All the children agreed that knowing the status is good for the children in being more responsible over treatment. They also expressed that on knowing the status, it helped them to understand what was happening to their body and how important it was in taking the medicines properly and at the right time. In addition, they also expressed that just revealing the status is not enough but should be supported with information that they received through treatment education workshop and should be simple and easier to understand. “I was very casual about treatment, even after coming to know my status. Only after knowing the complete information on treatment, I understood how through my negligence, I was allowing the virus to take control over my body.” “I used to skip medicines, if there is no proper food at home, or when somebody shouts at me, but now after learning about the importance of taking treatment regularly and at the right time, I am not having that attitude.” Source of information: The child preferred that the source of information should be either their parent or guardian. They also expressed that the information should be complete and even in a way they can understand. They also expressed it should be gentle and not scary. Most of the children also preferred having a support person while disclosing, especially if the support person is also a person/child living with HIV. “I was so scared, when I was told I was HIV positive by the ART counselor, “your mother also had HIV, but because she did not take medicines properly, she died early”. This counselor told me, when I was casual in my treatment.”
“When I got the information about my status, it was easier for me to accept, because my mother shared in very soft process.” Time and place of disclosure: Children preferred a private place in sharing the information. They also shared if it is followed by a place of relaxation it would be easier for them to accept. Other support systems required after disclosure: All the children revealed that a peer group is vital for one to openly share and discuss and learn information. For all the 10 interviewed they expressed that the peer group also serves as check point for many in their treatment process. It also helps them to share certain things that they are not able to share among their peers in school and neighborhood. Almost all the children expressed, that the fear of HIV at times pressurizes them, and during those times, just a call or enquiry among the peer group members helps them manage the stress. When should not one disclose the status? Children expressed that disclosure should not happen, when one is very sick or if there was a death associated with HIV. They also expressed that disclosure should not happen during exams. Children also expressed that when they come with questions, parents or the care takers should take it as lead to discuss and not give other reasons or tell lies about the status. For example “you only have fever, if you take these medicines you will become alright or these medicines are for your health, it is like vitamin tablets.” CARE TAKERS PERSPECTIVE: Almost all the parents and care takers revealed that disclosure is important. The general opinion was that one should have the right information as after disclosure, children raise many questions. They also agreed that there should be a support group or center for children to follow-up and learn information further. Among the grand parents, 5 of them revealed that the capacity building and treatment education workshop helped their children understand and be responsible over their health. “My grandson, after the treatment education workshop explained to me on why he should take medicines regularly. I was not able to explain anything, as I did not understand much on the treatment process, but after he came and shared, I learnt the importance of adherence in HIV and AIDS treatment.” Grandparents, most of them revealed that the status was already known to child because of their parent’s death.
Concluding points: As an organization Buds of Christ, the staff and the team understood the importance of disclosure. It was a reinforcement of the thought that disclosure definitely plays major role in treatment adherence. Focus was given more to children under the care of grandparents, as their understanding capapcity was very less and most of them assumed that once the status is know they were fine. Children below 10 years, though they knew the status, they only knew what it does to the system, so the fear was addressed through children’s group meetings. Children above 13 years, the stigmatized perception of HIV was affecting them and life skills and strengthening of peer group was proposed. For care takers, simple local examples were prepared in the training process for helping them understand the role of ARV.
About Buds of Christ Buds of Christ works among orphans and vulnerable children with the mission to empower children and enable well being. The primary focus of its work is among children affected by HIV and AIDS. Registered in 2007, Buds of Christ has established Nalam Child Development Center in creating a space for orphan and vulnerable children to fully utilize their potential through life skills education, treatment education workshops, support group meetings and also provide direct services for education and nutrition. Buds of Christ can be reached at budsofchrist@gmail.com