Living with a highly stigmatised, chronic health condition can be complex. This page explores some additional issues that may affect children and young people living with HIV and their immediate family members.
Friendships are an important part of childhood. As children grow up, they will seek deeper trust and support from their friendships. Young people who live with, or are closely affected by, HIV have reported finding this more difficult as they typically cannot share their HIV information with peers. This can mean they feel blocked from forming the depth of relationship they would like to have. Young people have described having two identities; the identity of having HIV themselves or within their immediate family is kept secret from most people in their lives.
'Keeping secrets' about their own HIV status or that of a family member can put young people under a lot of pressure. Guarding information can leave young people feeling sad or anxious. The lack of opportunity to talk through feelings, concerns and fears about how HIV affects them and their family can generate a considerable amount of stress. This is particularly true during adolescence, which is already a complex and often turbulent transition, as young people seek to develop and understand their identity and place in the world.
For any child, having a chronic illness or living with someone who has a chronic illness can impact on school life and educational attainment. When a school does not know that a family are living with HIV, this can add additional pressure. Poor attendance, frequent lateness, concentration difficulties or missed deadlines will not be understood as an effect of managing life with a chronic illness. It also means that the child involved will not have the understanding and support needed from school and other agencies.
There is now growing concern about the extent of low educational attainment in young people growing up with HIV. Levels of cognitive developmental delay are above average in children living with HIV. Families often do not share their children's HIV status with schools due to real fears that the information will not be managed well. This means that often a child's need for additional educational support goes unrecognised or intervention is delayed.
Knowledge about HIV
Unlike children with most other medical conditions, children living with HIV often have not had their illness named to them in the younger stage of childhood. A child whose parent is living with HIV may not be told about their parent’s HIV status until they are teenagers, if then. This can create complex dynamics in a family, with parents who ‘hold’ the information about HIV and try to keep this from their children experiencing stress and anxiety.
Commonly, young people understand that something is 'wrong'. Some find out about the HIV but, as no one has explicitly told them and helped them to understand what it means, they are left to manage this alone. This can lead to a lot of fear, confusion and unanswered questions, manifesting in behaviour difficulties at school or emotional problems.
Many young people living in an HIV-affected family have caring responsibilities, looking after a family member or supporting their household more than would be expected for their age. It is important that these caring roles are acknowledged and where possible, the young person is linked into specific services. We know that young carers can find their responsibilities extremely consuming and, for many, it can be very difficult to get a break.
An added challenge can occur if a young person's parent does not want their HIV status known by the young carers' service. In these cases, an intermediate professional may be needed to support the family to use this service.
Parents may not identify their child as a young carer, and young people may not self-identify as carers. If you think a young person may have a caring role in their family, you may find it helpful to explore the Children's Society toolkit on supporting families affected by HIV.
Visit our resource library to find publications that address the needs of young carers affected by HIV in more detail.