WS02.03Cracking the code of CF: empowering children with cystic fibrosis through peer-created resources

Abstract

Objectives

Cystic Fibrosis Trust's Youth Advisory Group are aged 14-25, and have CF or a close family member with the condition. The young people expressed that as children they often felt confused about what was happening to their bodies and were left out of conversations about their care. The group decided to create a CF dictionary of medical terms for 6–9-year-olds. The dictionary aims to empower children and reduce their anxiety, by explaining words that they hear in hospital in child-friendly, compassionate and engaging ways.

Methods

The young people met online twice a month to write the dictionary, with the support of the Trust's Lead for Children and Young People. The group wrote over eighty definitions, which balance science and facts with their lived-experiences. Content was checked by a paediatric CF Consultant and CF Psychologist.

Results

The group produced a detailed and exciting resource, with child-friendly illustrations and layout. The dictionary engages children by presenting its young authors as CF ‘special agents’, who take the reader on a journey to ‘crack the code of CF’.

Young people who created the dictionary feel proud that they have created something that will benefit children with CF. By working together to create something impactful and meaningful, the young people have forged valuable friendships and a sense of community. One young person said:

“It has been such an incredible experience, it has increased my confidence with my CF. I really hope it can make a huge difference for children trying to understand their CF.”

Conclusions

Informing children with CF about their condition and treatments is vitally important. Young people are passionate about this issue, think of innovative ways to address it, and are willing to work diligently to help younger members of the community. By tapping into young people's experience, compassion and creativity we can establish relevant and affective ways of engaging with young children about their CF.