“I could be living a totally different life right now”: lived experience and caregiver perspectives on the prevention of eating disorders

Eating disorder prevention is widely acknowledged as a priority for the field. However, little space has been given to investigating how people who have endured the impacts of eating disorders view the subject of prevention. This paper is authored by 11 individuals from the UK, all with lived experience of eating disorders and/or caring for someone with an eating disorder. A comprehensive overview of research literature on the prevention of eating disorders is provided using a staged, socio-ecological conceptual framework. This is enriched by an in-depth thematic analysis of personal narratives of illness, treatment, and recovery in relation to the subject of prevention. Five superordinate themes emerged, namely: missed opportunities for early intervention; systemic gaps in treatment; increased impacts of the eating disorder; preventable harm in treatment; and pervasive stigma, ignorance, and misunderstanding. These themes are mapped across stages of prevention and settings, highlighting the costs of the preventable suffering experienced by individuals, families, and communities impacted by eating disorders. The authors suggest key principles for policy-makers and treatment providers that are rooted in the perspectives, needs, and rights of those with lived experience. Recommendations are made for collaborative actions to redress gaps in eating disorder prevention to date, creating more inclusive and responsive approaches to prevention and treatment for the future.