“You’re just in crisis mode…frantic to get through the next day”: an IPA analysis of adjustment experiences amongst advanced oesophago-gastric cancer carers

Abstract Background Oesophago-gastric cancer is a complex and debilitating illness that often requires substantial support from informal carers. While the psychosocial impact of caring is well-documented, the specific experiences and adjustment processes of carers supporting individuals with advanced oesophago-gastric cancer remain unexplored. This study aimed to comprehensively explore these carers’ adjustment experiences, identifying opportunities for improved care and support.Methods Semi-structured interviews were conducted with ten purposefully recruited bereaved oesophago-gastric cancer carers in the UK. The interviews were audio-recorded, transcribed verbatim, and analysed using interpretative phenomenological analysis.Results Carers faced a demanding adjustment process, requiring them to adapt to an unfamiliar illness trajectory and manage complex nutritional needs amid rapid disease progression. Significant changes in roles, routines, and responsibilities often left them feeling overwhelmed, emotionally drained, and unable to maintain their own needs. Nevertheless, seeking knowledge, building supportive connections, and focusing on the present, enabled them to facilitate a more positive adjustment experience.Conclusions The findings underscore the need for comprehensive, tailored support for advanced oesophago-gastric cancer carers, both during the caring period and after bereavement.