EDIFY

UNDERSTANDING LIVED EXPERIENCE

CO-DESIGNING NARRATIVES OF YOUNG PEOPLE’S UNIQUE EXPERIENCES OF LIVING WITH AN EATING DISORDER AND THEIR PERSONAL PERSPECTIVES ON RECOVERY

BACKGROUND

EDIFY is a programme of research focused on how we understand and treat eating disorders in young people, with the aim to transform eating disorder detection, prevention, treatment and services, with the potential for step change in policy and practice for young people with eating disorders.

Six integrated workstreams will address key questions, including: What are young people's experiences of eating disorders and recovery? What are the unique and shared risk factors in different groups? What helps or hinders recovery? How do the brain and behaviour change from early- to later-stage illness? How can we intervene earlier, quicker and in a more personalised way? Outcomes will focus on expanding public and professional perceptions of eating disorders, enabling expression of under-represented voices and stimulating much-needed advances in policy and practice.

Image credit: Dr Mariana Lopes

APPROACH

The programme takes a transdisciplinary approach integrating arts, design and humanities with advanced neurobiological, psychosocial and bioinformatics approaches. Young people with lived experience of eating disorders are at the heart of EDIFY, serving as advisors and co-producers throughout.

Researchers at the Innovation School have developed expertise in employing participatory design approaches and visual methods to foreground the expertise of people with lived experience and to enable sensitive engagement, to co-design future experiences of health and wellbeing. As part of the EDIFY programme we co-lead Workstream 1, working collaboratively with researchers at University of Nottingham and three EDIFY youth advisors. The lived experience workstream aims to shed light on young people's experiences of help-seeking, treatment, transitions and recovery, with a focus on diverse, under-represented and high-risk groups. This will include young people from diverse cultural and ethnic backgrounds, LGBTQIA+ individuals, males, those with higher BMI, young people not in education, employment or training (NEET) and those from low socioeconomic and rural backgrounds. As young people may occupy multiple marginalised social identities, an intersectional approach will be taken. Qualitative, design-led and arts-based methodologies will be employed to co-create narrative accounts of illness and recovery with young people.

WATCH THIS SPACE!

This lived experience workstream is in early stages of planning and development, with conversations with contextual experts and development of research methods and tools in progress. Watch this space for further updates.

RESEARCH TEAM

Glasgow School of Art

Sneha Raman, Research Fellow

Tara French, Visiting Research Fellow

Fiona Stephens, Research Assistant

University of Nottingham

Heike Bartel, Professor of German Studies and Health Humanities

Youth Advisors

Beck Heslop, Lived experience expert

Ruby Abbas, Lived experience expert

Tallulah Street, Lived experience expert

FOR FURTHER INFORMATIOn

Please contact:

Sneha Raman, s.raman@gsa.ac.uk

Fiona Stephens, f.stephens@gsa.ac.uk

Funding and partners

EDIFY (Eating Disorders: Delineating Illness And Recovery Trajectories To Inform Personalised Prevention And Early Intervention) programme is funded through the Medical Research Council/Arts and Humanities Research Council/Economic and Social Research Council Adolescence, Mental Health and the Developing Mind initiative (grant number MR/W002418/1), and a partnership between researchers from Kings College London, University of Edinburgh, Beat, Glasgow School of Art, University College London and University of Nottingham, and co-produced with a youth advisory board of 15 youth advisors with lived experience of eating disorders.

The ‘lived experience’ workstream is led by researchers from the Glasgow School of Art and University of Nottingham, in collaboration with 3 youth advisors with lived experience of eating disorders.

To find out more about the wider programme and partners please visit: https://edifyresearch.co.uk