Enhancing the health and social wellbeing of children and young people living with HIV


HIV remains a highly stigmatised illness, the impact of this stigma can at times be greater than the physical health impacts of having HIV, as HIV is now considered a treatable chronic health condition.

This stigma unfortunately leads to high levels of discrimination and many people who live with HIV have faced distressing experiences. In families where there are one or more people living with HIV there is a need for a high level of confidentiality. It is common that only a limited number of people know that one or more people in a family is HIV positive. Siblings may not know their brother or sister has HIV; children may not be told a parent has HIV.

When children in families are told about their HIV or their family member’s HIV they are often told not to tell anyone. Schools also tend not to be told, along with friends or extended family members.

This reflects the high level of fear that is experienced in many families associated with living with HIV. The fear is that if people learn about HIV in the family it will lead to rejection and abuse. HIV frequently remains associated with morality. The association with sex can lead to people experiencing the feeling of being morally judged for having contracted HIV. This fear of moral judgement along with a fear of rejection and abuse builds the secrecy that often features alongside living with HIV for many families. HIV positive people have faced huge levels of discrimination across the globe, and even though there are now laws in the UK that protect them, (see Equalities Act 2010)  publicly the discrimination is often covert – children having school places withdrawn, organisations having bookings cancelled - whilst privately the discrimination can remain overt and explicit.

It is paramount that professionals working with families who live with HIV understand the impact of stigma associated with HIV. Professionals have a responsibility to uphold the level of confidentiality the child or family require and support them within this context. It is also a professional’s responsibility to address discriminatory attitudes and practices within their work place.

Use of a confidentiality agreement  can ensure that professionals do not breach confidentiality around HIV as this clearly outlines who already knows about HIV in the family, and who the family consent to being told.  

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