Table 4. Focus Group Discussion Themes.

Age of Disclosure “You know I think I have failed because I think the child should be disclosed to at 6, 7 years. That is my opinion though I don’t have the courage to disclose up to now…As the child grows it is becoming harder to disclose…if I disclose it will just kill him” (Mother of 10 yr old)

“You know when the child is 15, 16 it is not bad because s/he is growing up, can understand and can now keep a secret because if he tells his friends s/he will be ashamed of her/himself, so he will keep a secret….” (Mother of 12 yr old)

Who should Disclose to the child? “When we bring children here I usually see them playing in groups…so the counselors can talk to them even if they do partial disclosure.it will be like the counselor is educating them. It should be gradual.. .”(Caregiver of 10 yr old)

“Parents should disclose then the doctor to encourage the child. But if the child gets to know before you, parent, tell the child…it will be bad.” (Caregiver of 14 yr old)

Effect of Non-disclosure on Caregivers “It has really affected us.we don’t feel good.our hearts are troubled. You feel there is something missing in your life.” (Caregiver of 12 yr old)

Barriers to Disclosure “But if it was pneumonia I would have already told the child. Even when he tested TB positive I told him because it was just TB …But for this “one” a parent sees this is death and if you disclose is like killing your child by stabbing with a knife” (Mother of 10 yr old)

“….the child doesn’t know the father. I left the father when the child was one and half years old. And you know they are aware of how this disease is transmitted …Now if the child asks me where I got it from, where will I tell the child I got it from? ”(Caregiver of 12 yr old)

Reasons for Disclosure “One time I went to the toilet and I found that she had thrown the medicine in the toilet. I realized then I just have to tell her…At that time, she was12 years old.” (Caregiver of 16 yr old)

“She started asking because of the wounds in her hair. We used to plait her and then we had to shave her hair. She used to wonder what the problem was. Then her father took her for testing and then he told her.” (Caregiver of 12 yr old)

Effect of Disclosure on Child “From that day, she takes the medicine on her own, even when I leave her alone or she goes home for holidays” (Caregiver of 16 yr old)

She just said, “Daddy, just buy me a watch” And I bought her that and she never takes it off her hand. So when seven o’clock reaches, even if there are visitors, she will leave and take her things to the kitchen. If we are just the family, she just takes them. She doesn’t mind. (Caregiver of 10 yr old)

“She came with her sister and told me she was happy she had been told, so that she can know what her illness is. She is happy because she is now taking medicine and she doesn’t have any wounds. And when she comes for testing, they tell her that she is now tall.” (Caregiver of 12 yr old)

"When the doctors told him he was shocked. For two, three days when he was at home, he was just staying like this (Sitting still)… Don’t people get this problem through having sex, and I have never done that?", he asked" (Caregiver of 11 yr old)