Project 802 | Hepatitis – it is an English word: Poems found through the lived experience of hepatitis B in migrant communities

In the UK there are few lived-experience voices represented in the care of people living with hepatitis B. This work supports strengthening the voice of the community. Our previous research with migrants living with chronic hepatitis B explored experiences of care and the role that primary care should play. We identified three themes:
missed opportunities for care, the lasting impact of how first contact with healthcare is handled, and the importance of power-sharing through transparent knowledge. Participants described how these experiences shaped not only their engagement with care, but their sense of trust, stigma, and isolation. While these findings are being disseminated academically, they remain largely inaccessible to the communities who shared their stories and to
frontline clinicians who most need to understand them. This project will use poetry and narrative to co-create an accessible, culturally resonant anthology that disseminates these findings through lived-experience, rather than abstracted results. The aim is not to simplify the research, but to extend it adding emotional, cultural, and relational depth that traditional outputs cannot convey. The final output will be a digital-first poetry anthology, with a small print run for participants and key stakeholders. Selected poems may also be recorded as audio to increase accessibility, and we will collaboratively select a poem to submit to Consilience a peer-reviewed journal that publishes creative outputs exploring the spaces where sciences and the arts meet.

What we will do
We will run three facilitated online poetry and storytelling workshops (1-2 hours each) with 6-10 adults with lived experience of hepatitis B, recruited through trusted community and peer-support networks. Workshops will be co facilitated by a professional poet experienced in trauma-informed practice and lived-experience peer supporters. Participants will be invited to respond creatively to the three research themes: missed opportunities, making first
contact count, and power-sharing through knowledge.
To ensure inclusion beyond online participation, we will also use an asynchronous postcard and prompt-pack method. Participants who cannot/prefer not to attend workshops will receive a physical pack by post containing creative prompts and postcards, which they can complete privately and return anonymously. Contributions may include words, fragments, drawings, or multilingual reflections. This approach recognises stigma, variable health, caring responsibilities, and digital exclusion, and has been used by the poet successfully in previous community arts and health projects.
All contributions will be curated collaboratively, with participants deciding what is included, how it is presented, and whether they are named or anonymous.

Aims
– Disseminate qualitative research findings in an accessible, culturally meaningful form
– Amplify voices of people living with hepatitis B
– Create empathy-building resources for primary care and policy audiences
– Challenge stigma through narrative rather than information alone
– Offer participants a supportive, creative space for reflection and connection
– Extend and validate the original research themes through co-creation

Timeline
– Months 1–2: Recruitment; development and posting of prompt packs
– Months 3–4: Three online workshops; ongoing postcard returns
– Months 5–6: Collaborative curation, consent, and editing
– Months 7–8: Anthology collation, typesetting, and production
– Months 9–10: Optional online sharing event; audio recordings
– Months 11–12: Dissemination and evaluation