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A collage with the words predictable made out of pipe cleaners and deflated balloons that have energy written on them
Brighton & Sussex Medical School

Long Covid Stars

Long Covid Stars

Long Covid Stars is a collaboration between the University of Brighton, the University of Sussex, Brighton and Sussex Medical School, and Long Covid Kids, the world’s largest charity working with and for young people affected by Long Covid.

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About the project

STARS stands for Self-expression Through ARtS, but it also reflects how we see young people living with Long Covid: as bright stars, shining through the challenges of their condition and illuminating the way for others.

We firmly believe that they should be at the centre – the stars - of any story or narrative that emerges from this work.

Our aims are to:

  1. Establish a multidisciplinary partnership that empowers young people living with Long Covid through arts-based research and knowledge exchange;
  2. Generate a series of creative outputs to challenge the invisibilisation of young people living with Long Covid; and
  3. Co-produce follow-on research to improve the lives of young people living with Long Covid.

Our research utilises arts-based methods to explore the lived experiences of young people living with Long Covid. We believe the arts and humanities are uniquely placed to facilitate research into complex and traumatic experiences through a nurturing and creative process. This is essential for stigmatised and often invisibilised conditions such as Long Covid.

Collection of logos for everyone involved in the long covid stars project

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A community-academic partnership

This project was directly co-designed with Long Covid Kids – who support more than 10,000 families affected by Long Covid – alongside two young artists living with Long Covid (aged 17 and 19), and a youth advisory panel.

Together, we identified the need for truly participatory and arts-based research that sheds light on the complex experience of growing up with Long Covid. Through arts-based and participatory methods, Long Covid Stars seeks to capture the richness of young people’s experiences beyond positivist biomarkers of illness – including emotional, social, and psychological dimensions.

We work through meaningful partnership, with all decision-making – from research ethics to dissemination – shared with Long Covid Kids and young people living with Long Covid.

The young people in our partnership are passionate about using art to spread empathy among the general public and to enhance a sense of belonging within their own community. A secondary aim of Long Covid Stars is to challenge dominant representations of Long Covid and generate possibilities for viewers to form emotional connections with the art(ists).

Art exhibition

Collage of images and words that represent lived experiences of young people living with Long Covid

We were delighted to host an exhibition of collages and creative writing that explored the lived experiences of young people with Long Covid. The artwork was displayed at the Medical Teaching Building at BSMS in July 2025.

We invited audiences to witness and connect with these powerful, youth-led creative expressions, offering insight into what it means to grow up with a condition too often overlooked.

We are currently curating a permanent online exhibition. Watch this space.

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Biographies

Dr Marija Pantelic (Principal Investigator)

Marija is a Senior Lecturer in Public Health and Lead for the MSc in Public Health. Marija is a health stigma researcher using a range of mixed methods, including social epidemiology, co-production and evidence synthesis. 

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Dr Elle Whircroft (Postdoctoral Researcher) 

Dr Elle Whitcroft is a researcher in the Department of Education & Primary care at BSMS. Elle’s research interests include bringing together creative arts, arts engagement, and other participant-centred methods to better understand LGBTQ+ intergenerational connection and healthy ageing. 

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Kirsty Stanley (Safeguarding Lead) 

Kirsty has been an OT for over 20 years, after training at St. Loyes School of Occupational Therapy in Exeter. She has worked in the NHS, as a lecturer, and is now an Independent Practitioner working with people of all ages.

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Rosie Pidgeon (Workshop Facilitator)

My name is Rosie Pidgeon. I am 20 years old from Northern Ireland and a young artist. I have had Long Covid since August 2021 and have used art since then to express my experience of Long Covid.

Katie Robinson (Workshop Facilitator) 

Katie is 18 years old and has had Long Covid for four years. She’s not currently in education, due to her illness, and when she has energy, she enjoys reading, writing and spending time with her dog Mr Darcy. 

Dr Helen Johnson 

Helen Johnson is a Principal Lecturer in Psychology and Co-Director of the Centre for Arts and Wellbeing, working at the intersection of critical social science, community psychology and arts-based/led inquiry. Helen is a social scientist with a background in Psychology and Sociology, and a spoken word artist with over 20 years' performing experience. 

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Prof Carrie Llewellyn

Professor Carrie Llewellyn is Head of the Department of Primary Care & Public Health, a Professor of Applied Behavioural Medicine, a behavioural scientist and a Chartered Psychologist and Associate Fellow of the British Psychological Society.

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Funding

This work would not be possible without funding from the UKRI Arts and Humanities Research Council, University of Brighton’s Impact Acceleration Account (Ignite 3.3), and in-kind contributions from Long Covid Kids.

Ethics

Ethical approval has been granted by the BSMS Research Governance Ethics Committee (ER/BSMS9GXW/3).