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

Confidentiality

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

This stigma unfortunately leads to high levels of discrimination. Many people who live with HIV have faced distressing experiences. In families where one or more members are 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 a person has HIV, even within their family. Siblings may not know that their brother or sister has HIV, and children may not be told that 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.

Secrecy around HIV reflects a high level of fear that many affected families experience. The fear is that if people learn about HIV in the family, it will lead to rejection and abuse. The risk of HIV transmission is often overestimated and the virus is still frequently viewed in terms of morality. Associations with sex and drug use can lead to people experiencing or fearing moral judgement for having contracted HIV. HIV positive people have faced huge levels of discrimination across the globe. Even though UK law now protects them (see Equality Act 2010), discrimination in public is often covert and can be subtle – e.g. children having school places withdrawn, organisations having bookings cancelled. Privately, 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.

A correct understanding of HIV transmission is important to reducing stigma. Following standard infection control procedures in settings and services, it should be assumed that any individual could potentially have HIV or another bloodborne virus.

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.  

Visit our resource library to view publications that explore confidentiality in more detail.