In August 2013, Body & Soul lowered the threshold at which younger members attending groups need to be aware of how HIV affects their lives to 10 years old. This huge change for the group first set up in the very early days of Body & Soul back in 1996, transformed the landscape of psychosocial support services for children and young people living with and affected by HIV in the UK.
At present, in the UK it is widely practiced that children living with HIV should be told about their diagnosis before the age of 12. However, guidelines from the World Health Organisation show that positive outcomes can come from telling children at a younger age of between 6-12 years, provided the process is undergone incrementally and according to the cognitive development and emotional maturity of each child. An individual’s right to know the health information of another person, be it their parent or sibling may not be arguable. However the WHO also advises that children of school age who are affected by HIV should also be told the HIV status of their parent or care-giver.
Body & Soul has over 18 years’ experience working with children and families affected by HIV. First-hand accounts from our members testify that a young person’s feelings about their HIV diagnosis or a diagnosis in the family is directly influenced by the way they find out. We know that a young person’s mental health and wellbeing can be positively influenced if naming HIV happens in a planned and supported way with the full involvement of the parent or carer-giver. We know this from speaking to the children and young people that we support now, as well as those who have already reached adulthood and who were support through this process by Body & Soul at some point over the past eighteen years.
The transition of the BaSe service was undertaken in consultation with the children and their families and foremost informed by the children’s own views and responses about the kind of service they wanted to see. At its heart, the BaSe is a bold and user-led programme, informed by the views of its members. The relevant UNCRC principles which underpin the programme are:
Reflecting on this brave and quiet change a year on, it’s clear that showing children that you acknowledge and value their points of view has a positive impact on self-esteem.
100% of BaSe members agree that since the change coming to BaSe helps to build their self-esteem.
Involving children in decision-making not only has positive outcomes for children themselves but can help in the progress of a community. 18 years ago Body & Soul pushed the boundaries by creating a safe and honest space for children and teenagers to learn and share their experiences of living with HIV at a time when for many, bar the young people themselves, it was considered wholly inappropriate. This has since become the status quo. Over the last year the children of the BaSe have begun to blaze a new trail and push our society ever closer to understanding and valuing the views and needs of our children.
“Now I don’t have to pretend I don’t know or I don’t have [HIV]. I can be open like a book; each chapter growing. It’s good to know that I don’t have to think I’m alone. There will be people in my situation.” Moya – 11 years old.