Lived experiences of type 1 diabetes and disordered eating: Insights for prevention and early intervention in Paediatric care

Introduction The high prevalence and risks of eating disorders and disordered eating in type 1 diabetes (T1D) are well recognised, yet the aetiology is poorly understood. Current understanding draws on established eating disorder models, complemented by an emerging lived experience evidence base. This study aimed to retrospectively explore how disordered eating develops whilst growing up with T1D using lived experience in order to inform future prevention strategies within clinical practice. Methods A qualitative design underpinned by an interpretivist approach was used to explore the lived experiences of adults diagnosed with T1D in childhood who self‐identified as having experienced disordered eating. Eleven participants (aged 18–61; 10 females, 1 male) were recruited via social media and advocacy networks between January and October 2023. Semi‐structured interviews were conducted remotely. Data were analysed inductively using reflexive thematic analysis following Braun and Clarke's six‐phase framework, with attention to researcher positionality and context. Results Analysis generated five themes that highlight how disordered eating develops and is maintained in paediatric diabetes care: Connection with others: Relationship dynamics shaped early food and diabetes behaviours; Shame and secrecy: Stigma related to weight, diabetes, and eating behaviours reinforced secrecy Identity and self‐view: Identity within the healthcare system and feelings of inadequacy and control‐based behaviours as well as neurodiversity and mortality. Feeling held back: Emotional and social limitations of diabetes including trauma, contributed to disordered eating; Change and transitions: Shifts in care, technology, and independence influenced disordered eating behaviours. These findings highlight illness and care‐specific drivers that extend beyond body image concerns. Conclusion This study challenges dominant, weight‐focused frameworks by revealing how disordered eating in T1D is shaped during paediatric diabetes care. Prevention must be embedded within routine paediatric diabetes care. Findings offer a lived‐experience framework to inform more inclusive, psychologically informed paediatric diabetes services.