Illuminations: reimagining hospital care of sickle cell crises through theatre and film

Project team

Stephen Hibbs – PhD student (WIPH)
Prof Mojisola Adebayo – Theatre Writing and Performance (STA)
Estella Daniels - Honorary Research Fellow (WIPH)
Kofi Amankwah - Freelance co-producer
Shane Telemacque - Honorary Research Fellow (WIPH)
Gail Babb - Lecturer in Theatre & Performance, Goldsmiths University of London

Project description

This project uses interdisciplinary, participatory research to improve care for people experiencing sickle cell disease (SCD) pain crises - an urgent priority in the All Party Parliamentary Group’s No One’s Listening report and the NHS Race and Health Observatory review. Building on Stephen’s Wellcome-funded ethnography (EPOC4) exploring what constitutes good crisis care, we will co-produce a theatre production and behind-the-scenes documentary with people living with SCD, healthcare professionals, and creative practitioners led by Professor Mojisola Adebayo. This process will generate new insights into crisis care, strengthen wellbeing and resilience, and build trust and understanding with an interdisciplinary team.

How did the team come together?

The project is result of conversation between Stephen and one of the research participants for his PhD project. Stephen is a haematologist by background, but his work uses anthropological social science methods in the study of SCD. Kofi, a participant in the research, is an actor living with SCD who suggested translating the research into a piece of theatre. Stephen contacted David Miller (Senior Social Ventures Lead at QMI) who introduced him to Mojisola, and by coincidence met a theatre-maker with SCD at a children’s birthday party. From there, a larger creative team of theatre and filmmakers were invited into the team.

How did you decide on this question/topic?

The topic emerged from a desire to generate insights that mattered both clinically and socially, and convey these in a compelling way. Many of the team members are bringing lived experience of SCD to the creative process. The team met regularly online and held two two-day workshops, while pursuing necessary funding for a long-term piece of participatory research. A grant application was made to the Arts Council, who strongly supported the interdisciplinary collaboration, as well as to the CIRCLE fund which will allow the project to scale up further.

What activities will you undertake as part of this project?

The combined funding will allow for three weeks of performances in community, healthcare, and public venues, alongside gathering of participant feedback and observations to demonstrate the impact on relations between people living with SCD, healthcare professionals, and the wider public. Two evaluation workshops will also be held: one focussing interdisciplinary learning, and the second focusing on inclusive and ethical theatre making, leading to production of a practical framework.