Handling the stigma: Supporting pupils living with HIV

Written by: Emily Hamblin | Published:
Image: Adobe Stock

Children and young people living with HIV still face stigma. How can we change attitudes and create HIV-friendly schools? Emily Hamblin advises

When Lloyd Russell Moyle recently hosted an event in Parliament to highlight how schools can support pupils living with or affected by HIV, he was the perfect person for the job.

Mr Moyle is the first ever MP to disclose his HIV status in the chamber of the House of Commons, and only the second MP to live openly with HIV.

He knows better than most about the stigma that surrounds the condition and why guidance for schools, such as that published by CHIVA (Children’s HIV Association) and the National Children’s Bureau (Conway, 2022) to mark the event, is still vital in challenging attitudes.

That’s not to say that things aren’t improving. It is clear that much has been achieved since the first edition of the guidance was published in 2005. Young people’s participation has developed, and there is now a generation of young HIV activists making their voices heard and supporting each other.

When HIV is taught in school, these young people are, because of their lived experiences, subject matter experts.

But the fact that they are usually invisible experts – deterred by stigma from sharing their knowledge and insights openly – shows that we still have a long way to go.

Misinformed about transmission

The stigma is associated with wrongly held beliefs about HIV, and it leads to discrimination against those affected.

HIV cannot be transmitted through normal daily contact in school. In fact, there has never been a case identified of a child passing HIV to another child, teacher or member of the school community – never.

You cannot get HIV from kissing, cuddling, or spitting, or by sharing drinks, plates or toilet seats.
If a child has a cut, universal first aid procedures and standard hygiene practices will be effective in preventing the transmission of all blood-borne infections, including HIV.

The results of an Ipsos Healthcare poll of 500 teachers in 2014 reflected misunderstanding about the transmissibility of HIV: nearly one in five thought HIV could be passed on through kissing.

Circulating this misinformation just adds to stigma and means children living with or affected by HIV are at risk of isolation and discrimination from their fellow pupils and other members of the school and wider community. This is one reason why the majority choose not to share information about HIV, as they have every right to do.

The effects of medication

Schools should also be aware that children and young people living with HIV may experience physical and mental health issues and take a strict daily regime of medication which can have side-effects.

Furthermore, children living with or affected by HIV may fall behind at school if they or their family members have periods of ill-health, as this can mean time out from school to attend hospital appointments or care for others. Support may be required to prevent them from dropping behind.

HIV is classed as a disability under the Equality Act 2010 from the point of diagnosis. Schools need to understand this legislation as it has important implications for pupils in many ways, not just around HIV.

The Council for Disabled Children has published a guide for schools on disability and the Equality Act (Stobbs, 2015). It notes: “All schools can expect and must plan for disabled pupils. However, schools that provide high-quality inclusive provision for all pupils; that work in close consultation with parents and pupils themselves; that make adjustments to ensure disabled pupils participate in all aspects of school life; that accept and celebrate difference; and that do not compromise aspirations for disabled pupils are likely to realise benefits for disabled pupils as well as pupils who are not disabled.”

The guide confirms that there is no duty on either parents or pupils themselves to disclose any disability, including HIV, so schools need to ask questions “in a way that both respects a pupil’s dignity and privacy and encourages parents, or children and young people themselves, to share information”.

What can schools do?

Being an HIV-friendly school does not require a lot of special or additional work. Schools already have duties to support pupils with HIV set out in statutory guidance on supporting pupils at school with medical conditions. And they must also teach about HIV as set out in statutory guidance on relationships and sex education and health education.

The NCB and CHIVA guidance can help them to do this confidently and effectively, in line with existing procedures. This is about teaching HIV as much as it is about supporting pupils living with HIV. CHIVA has just launched a toolkit – Empower students – to support HIV education, linked to its award-winning film based on young people’s stories.

This work will help schools to contribute to better public awareness of HIV, improving the quality of life for people living with HIV, supporting HIV prevention, and fostering empathy and inclusion. It will inspire young people to become – as CHIVA stated at the launch of the revised edition of HIV in Schools – “the generation that ends HIV stigma”. 

  • Emily Hamblin is senior development officer, health and wellbeing including HIV (Children & Young People HIV Network) at the National Children’s Bureau. Visit www.ncb.org.uk

Further information & resources

  • CHIVA: Empower students: End HIV stigma: https://bit.ly/3DMQQzk
  • CHIVA: Life Growing Up, a film based on the lived experiences of children and young people: https://bit.ly/38yWUQB
  • Conway: HIV in Schools: Guidance for teachers, NCB & CHIVA, March 2022: https://bit.ly/3LJ7YsE
  • Stobbs: Disabled children and the Equality Act 2010: What teachers need to know and what schools need to do, Council for Disabled Children, March 2015: https://bit.ly/3jhElCB

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