The complexity of living with a highly stigmatised chronic health condition can lead to additional psychosocial issues for those living with HIV and their immediate family members. Here are some issues that may affect them:
Friendships are important in childhood. As children grow up they will seek deeper levels of 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 peer group. This can mean they feel they can’t form the depth of relationship they would like. Young people describe having two identities, and the identity of being HIV positive, or having a close family member who is, is kept secret from most people in their lives.
Keeping information about their own HIV status or that of a family member can at times cause young people to feel sad or anxious. If they are worrying about someone, they would normally share this with their friends, but the confidentiality HIV demands means that they do not. This ‘keeping of secrets’ can put young people under a lot of pressure. The lack of opportunity to talk through how they feel and their concerns and fears about how HIV affects their family, can generate a considerable amount of stress. This is particularly so during adolescence, which is already a transitional time, often defined by turbulence as young people seek to develop and understand their sense of who they are.
For any child, having a chronic illness or living with someone who has one can have an impact on their educational achievements and their engagement with school. Where a school does not know the 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 child 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 the group of young people who have grown 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 disclosure of HIV to schools due to the fear that this information will not be managed well, means that often this need for additional educational support is either delayed or remains unrecognised.
Knowledge about HIV
Unlike other medical conditions, in many cases an HIV positive child will not have their illness named to them in the younger stage of childhood. For a child living with an HIV positive parent, they may not be told about their parent’s HIV status until they are teenagers and many are still not 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 seek to keep this from their children. It is also common that young people know something is wrong, many find out about 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 and confusion.These family and individual 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 these are acknowledged and where possible, the young person is linked into young carers services. We know that young people can find their caring responsibilities extremely consuming and for many it can be very difficult to gain any respite from their household duties and care responsibilities.
An added challenge can be presented 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.
Additionally parents may not identify their child as a young carer. If you suspect that a young person may be undertaking a caring role in their family you can contact Children’s Society Include Project or the Princess Royal Young Carers.
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