Helping children come to terms with HIV
By Johanna Gavira Torres (COTA Administrator, Colombia). Lea en Español.
Our partner Fundamor provides care and support to children living with HIV and Aids. A few months ago Fundamor invited me to accompany them on an activity as part of their work to produce a guide on telling children that they are HIV positive. The project is being co-funded by COTA and UNICEF and the guide will be used by health and social care services, and families.
The activity involved working in focus groups with children and adolescents who are HIV positive to find out their opinions, ideas, experiences and knowledge about disclosing and receiving a diagnosis of HIV. As part of this activity, Fundamor organised an excursion to a rural area in the south of Cali. 14 children and adolescents took part in the activity: 7 from Fundamor (including 1 graduate) and 7 who live with their families but have contact with Fundamor.
The farm was beautiful, with lots of trees and a waterfall, which created a nice atmosphere for the children and young people. After our introductions, two groups were formed. I was attached to group #1. We sat round a table and as soon as we were comfortable we began the activity with a series of questions. The questions threw up some incredible insights from the children:
"Knowing my diagnosis made me aware of the need to look after myself, to take my medication at the correct time and by my own volition. It also helped me to accept myself, the fact that I must take more responsibility for my diagnosis and understand that I can tell those closest to me about it." (Response from a 15 year-old girl).
"Revealing a diagnosis is very important because if we don't know why we have to take so much medication, we don't understand why it always needs to be taken at the same time. Nor do we understand why our families are so insistent about taking it. Often this ignorance leads us to refuse to take the medicines, but now we know about our diagnosis, we understand everything and this makes us realise we need to take them. We accept responsibility and our families don't have to force us." (Response from a 13 year-old girl).
"We feel good now we know about our diagnosis. Now, thanks to the support of the foundations, we get much more support in terms of inclusion in society and have better access to education. It also feels good to know that I'm not alone and to share this with other boys and girls of my age. It's really good because the other children tell us about their experiences and this gives us the strength to appreciate life more." (Anon)
The Fundamor team also asked questions to find out the children's opinions on who should give them their diagnosis and whether they think they have a right to know, the impact of receiving their diagnosis and what the experience was like for each one of them - whether it was positive or not. All of the young people took part in a very active way, each with something to contribute - even the youngest children. For all of them, it was clear that revealing their diagnosis was not a subject to be taken lightly.
The information we found out through the children's sharing of their experiences showed us how each of them is coping with his or her diagnosis; how being so young and full of zest for life enables them to teach us a lesson through their commitment, their struggle and the responsibility assumed by each one on learning they were HIV positive and accepting it in a mature, positive manner.
Staff at Fundamor were able to bring together important information for their guidebook, based on real experiences from the young people themselves. This will allow us to begin to support the broader processes of revealing an HIV diagnosis to children and adolescents, their families, communities, schools and the different health professionals in Colombia.
COTA has supported Fundamor since 2007, and currently supports two aspects of their work: helping children to prepare for independent life, and helping Fundamor to share their expertise on telling children that they are HIV positive.
1st December is World Aids Day. Please help us to mark this by making a donation today. Text COTA05 £5 to 70700 or donate online.
Our thanks to all the children, young people and staff at Fundamor for allowing us to share this experience, and our volunteer Alison Lambert for the translation.
