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

U13's group

November 2018

6 girls aged 8 to 14 years old attended a South West Regional peer support weekend for children and young people living with HIV.    

We were joined by the Participation Worker for The Association of Young People’s Health (AYPH) to  collaborate on producing an animated film that imagines an idealised world where young people are supported with the challenges of living with HIV to reach their potential. 

We began by looking at the challenges of growing up with HIV. Young people listed their individual challenges. From this exercise we found many common issues which could be grouped into 3 themes: 
• Having to be ‘perfect’ and putting on a front
• Taking medicine
• Not being able to talk about HIV.

 

The group looked at their support services, and thought about what they do to help alleviate some of their challenges. These ranged from sports and social activities with friends, to talking to family members, support staff at school who know about their HIV, or CHIVA friends. 

Participants were encouraged to use their imaginations for the basic storyline for the film and this is a flavour of what they said:

 ‘A community where we’re not always on our phones/social media’
‘Not being pressured at school/less pressure overall’
‘People can always see support systems, we can always access someone we can talk to who won’t judge’

The animation is now finished, and we launched it with a friends and family screening at the Cube Cinema in Bristol in May 2019. You can view and share the film here.

Read our full report on the project, including all the behind the scenes discussions here: http://www.youngpeopleshealth.org.uk/...

June 2018 Meet-up

5 participants aged between 8 -14 years old attended a younger persons meet up in Bristol in June. After some warm-up activities participants were introduced to the theme of HIV where they discussed shared experiences, talking to other family members about their HIV and talking to their employers in the future.
Another discussion was around education and schools. Participants showed a strong desire for schools to be more educated and in turn be more able to hold their status in confidence, in order to support them better.
Responses from the activity 'Game of life':

Q. What three things would help make it easier for you living with HIV at school?
A 1) For the school to be more educated, one teacher didn’t even know all the ways HIV is passed on 2) For my friends to know
3) For it to be a normal thing. 

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Under 13's weekend.

7 girls, aged 9 to 13 years attended a South West regional peer support weekend for children and young people living with HIV. This event provided them with many opportunities to talk about their experiences with their peers, explore their feelings about living with HIV, and form friendships based on shared experiences. For some, they had never met another person living with HIV outside of their own family. Participants had many basic questions about living with HIV. Although they would have covered this at clinic appointments, it is clear that information needs to be revisited again and again and that each new piece of learning gives rise to new questions: ‘Will I have it for life?’ ‘What is AIDS?’ ‘The Dr's said I’m not allowed to see them on my own, but I’d like to’.

The participants bonded well as a group and were observed to talk and laugh together freely. When asked how they felt about the weekend and being part of a CHIVA group they said: ‘It’s like a new life that you never knew about until now’ ‘It makes you feel smarter’ ‘I wish we could stay for a week’. ‘I learnt that HIV is yet to be cured but without it I wouldn’t be part of CHIVA or meet any of the people I know today’.

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