Feldgruppe
Disclosure

And then it was time for the focus group discussion with the caregivers. I was very curious about what I would hear from them and was in the middle of running here and there; preparing a room, consent forms, a babysitter, etc., when a little girl came running towards me.

And then it was time for the focus group discussion with the caregivers. I was very curious about what I would hear from them and was in the middle of running here and there; preparing a room, consent forms, a babysitter, etc., when a little girl came running towards me.

“Dr Ann!” she cried and jumped at me, hugging me. I was moved and a little bit perplexed. Where had I met her before? I knew so well that I recognised that square face and the sweet smile, but I couldn’t fully place her.

“Are you Elsabet?” I asked. She looked at me with hesitation, but nodded her head.

“How is your vision? Did you see the eye doctor?”

She said something about a social worker and at once it struck me. It was the girl I interviewed, the one who had a stepfather who was ignoring her! I took her by the hand and led her to the counsellor for translation. The girl spoke to her, and I could hear that her voice was somehow veiled.

“Dr Ann, she is wondering if you have forgotten her.”

A pang of regret struck me, as she turned her child’s gaze towards me. With burning cheeks I tried to explain that I had not forgotten about her; that I had just mixed her up with another patient.

“She wants to know if you remember her name.”

I cursed my poor memory. “I’m sorry, you’ll have to tell me again.”

“Chido.”

Chido was at the clinic with her mother for her two monthly review, and as promised she had brought her to me to discuss her issue of lack of school fees. The project psychologist and I sat down and talked to them, connecting them with organisations that focus on girls and education. At the end of the meeting I took the opportunity of asking the mother if she wanted to participate in the focus group discussion. To my great joy she agreed.

Chido’s mother was a beautiful woman - small and petite and with a warm smile. I could see that she would have had no problem finding a new husband, in spite of her HIV status. She seemed a bit shy though, and sat mostly quiet while the other caregivers were having a heated discussion about when and how they should tell their children about their status. Some were saying that things should be open and on the table, while others were propagating for “responsible disclosure” to protect the child and the family from stigma. I could see that she was following the discussion with keen eyes though, and when there was an appropriate gap I took the opportunity of including her.

“What is your experience about this?” I asked turning towards her. She answered me with a clear voice, and as with Chido I was surprised at how straightforward she was.

“For that aspect, for disclosure issues, we need help.”

She told us about Chido, about how she found out about her status. Chido had been told that she was taking her pills for asthma, but as Chido got older she started to resist taking them. She was brought to see the counsellors who referred her to the HIV positive youth support group, without telling her about her status beforehand.

“Chido came home from the support group saying 'Mama, why am I taking these drugs?' And I insisted it’s asthma and she said: 'No, now I’ve been told that these are ARVs and they are for people who are HIV positive.’ That’s when I had to open up and explain to her.”

She was laughing as she told me this, a surprisingly free and open laughter. I was frowning though, as it isn’t really ideal for children to find out their status without the consent of the parent. But to my surprise Chido’s mother was positive about the experience.

“It made it easier for me to fill in the gap and ever since then, Chido has been so excited about the support group - that’s where she draws her strength.”

I asked them how we could help them with disclosure issues and Chido’s mother was the first one to raise her hand. She suggested that the caregivers needed more information on how and when to disclose and that they needed support from the clinic to disclose gradually to the child.

“Because I don’t want the child to have the same experience that I had when I found out about my status. Literally my heart skipped. If I’d be telling my child that, I know this is what she would experience.”

I was very pleased with her answer – it was exactly what I had wanted to hear. Said and done, the clinic is now working on introducing group discussions for caregivers about disclosure issues and a support group for caregivers. And we want to make sure that more children have access to the youth support group.

Chido isn’t the only one who draws her strength from it; many children have described similar experiences. The support group is where they learn to accept their status, and gather strength when life is hard. And that’s something worth supporting.