Translating palliative care narratives into art: An arts-based knowledge translation pilot with young adult artists

Cultural silence around death and dying due to fear, anxiety, norms, taboos, and beliefs has led to social initiatives that are more 'death-positive'. This silence has had a disproportionate impact on young adults. 'Death literacy' has emerged to support greater community awareness and understanding of end-of-life care options through education and dialogue. Arts-based approaches may be particularly relevant for young adults, yet research remains limited.

This knowledge translation project explored arts-based approaches for translating palliative care narrative data into creative forms, examining the feasibility of converting research narratives into accessible art forms that could facilitate engagement with death-related topics.

This project employed an arts-based knowledge translation approach, co-designing a course for undergraduate artists with researchers, artists and faculty to translate palliative care narratives.

The course utilized anonymized text from ethnographic research (K.S. PhD data) examining families and healthcare providers navigating paediatric transplant and palliative care, drawing from 145 journal entries by 18 healthcare providers who documented experiences of empathy, illness, suffering and death. Four undergraduate artists created diverse art forms including collages, sketches, digital drawings, storyboards and journey maps.

Over 25 artistic works illustrating death and dying experiences were created. The collaborative translation process revealed that undergraduate artists could effectively interpret and visualize complex palliative care narratives through diverse artistic approaches. Course evaluations and informal feedback indicated that artists found the experience meaningful and challenging, and expressed interest in further exploration of death-related topics.

The translation process produced accessible visual interpretations of complex illness narratives and, based on course feedback, appeared to facilitate openness to death-related discussions. These findings suggest arts-based translation approaches warrant further exploration as potential tools for enhancing death literacy, with future research needed to systematically evaluate their impact on young adults' comfort and competence with end-of-life topics.