An interpretative phenomenological analysis exploring the lived experience of being an ambassador for the Huntington’s Disease Youth Organisation

This qualitative interview study explored the lived experience of becoming a young ambassador for the Huntington’s Disease Youth Organisation (HDYO). The participants were purposively recruited through an existing young ambassador programme and six in depth semi structured interviews were carried out through Microsoft Teams. Interviews were transcribed verbatim, and the data was analysed using the stages of IPA. Three superordinate themes emerged through the analysis: ‘Giving and receiving support’ reflected the collaborative benefit of being an ambassador by supporting others and also receiving the support from someone with a shared experience. Having a voice ‘reflected the perceived sense of importance of feeling empowered to share their HD story. Finally, A community of shared experiences’ recognised the immense impact and sense of identity that came with connecting with other young people impacted by HD. This study has provided insight into the motivations and impact of becoming a HDYO ambassador and emphasises the importance of ensuring young people impacted by HD are appropriately supported and empowered to share their stories.