Background Our research has found that young people may have a pivotal role in helping their family navigate unfamiliar systems and many act as interpreters but often feel excluded from any discussion of the impact of serious illness and death in their family. People in diverse ethnic communities often have little understanding about palliative care and hospices and consequently experience inequity of access to services and outcomes in end of life.
Aims We wanted to open up the conversation with young people about dying, including the concept of palliative care and what a hospice does.
Methods Two hour workshops were conducted in partnership with a community youth worker and a visual artist. Recruitment focussed in areas of Leicester and Loughborough with low white British population density. Participants shared and developed visual representation of their thoughts in response to ‘why does dying matter to me?’
Findings Forty-nine 13–25 year olds attended 9 workshops held in schools, the hospice and youth education project venues. The art they produced was of great diversity and focus including images of nature, fantasy, coffins, monuments, time and religion. Participants used vibrant colours to contrast with the black of death. Most students completed the evaluation form indicating they found the workshop useful and enjoyable. For some the workshop gave them more understanding of a hospice, and empowered them to voice their opinions and think more about life and death. The artwork, developed into pieces of a jigsaw, was pieced together and displayed at a public celebratory launch in Dying Matters Week 2023.
Conclusions Art-based workshops are a useful way to engage with young people and empower them to discuss their experiences and thoughts about dying and potentially enable a great community dialogue and understanding of access to hospice care.
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