The complexity of living with a highly stigmatised chronic health condition can lead to additional issues for those living with HIV and their immediate family members. Here are some issues that may affect them:
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 the information about HIV with their peers. This can mean they feel they can’t form the depth of relationship they would like to have. Young people have described having two identities, and the identity of living with HIV, or having a close family member living with HIV, is kept secret from most people in their lives.
Keeping information about their own HIV status or that of a family member can cause young people to feel sad or anxious. If they are worrying about something, they would normally share this with their friends, but confidentiality around HIV means that they do not. 'Keeping secrets' can put young people under a lot of pressure. The lack of opportunity to talk through feelings, concerns and fears about how HIV affects their family, can generate a considerable amount of stress. This is particularly true during adolescence, which is already a complex transitional time, often defined by turbulence, 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 one, can have an impact on how well they do at school. When a school does not know a family are living with HIV, this can add additional pressure as poor attendance, frequent lateness, bad concentration or missing deadlines will not be understood as an impact of living with chronic illness. It also means that the child involved, will not have the understanding and support needed from the school and other outside agencies.
There is now growing concern about the extent of low education attainment in young people who are growning up living with HIV. HIV positive children have higher than average levels of cognitive development delay, which could be supported by extra educational support if discovered early. However the lack of sharing of HIV status to schools, due to the fear that this information will not be managed well, means that often this need for additional educational support is delayed or remains unknown.
Knowledge about HIV
Unlike most other medical conditions, in many cases an HIV positive child will not have their illness named to them in the younger stage of childhood. A child living with an HIV positive parent, may not be told about their parent’s HIV status until they are teenagers and many are still not even told then. This can cause complex dynamics in a family. There are stresses and anxieties experienced by parents who ‘hold’ the information about HIV and try to keep this from their children.
It is common that young people already know something is wrong, some find out about the HIV, but, as no one has formally told them and helped them understand what it means, they are left to manage this alone, which can lead to a lot of fear, confusion and unanswered questions. These stresses can present in behaviour difficulties in school, or emotional problems.
Many young people living in a family where there is HIV have caring responsibilities above and beyond those expected in another family. It is important that these 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 when the parent may not want their HIV status known by the young carers service, therefore an intermediate professional may be needed to support the family to use this service.
On top of this, the parents themselves may not identify their child as a young carer. If you think a young person may have a caring role in their family you can contact Children’s Society Include Project.
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