“You’re just in such crisis mode…frantic to get through the next day”: an interpretative phenomenological analysis of adjustment experiences among carers of patients with advanced oesophago-gastric cancer

Abstract

Abstract Background In advanced oesophago-gastric cancer, rapid disease progression and complex symptoms contribute to a distinct caring context. Yet little is known about how those providing informal care interpret and adjust to these experiences, despite increasing recognition that this plays a key role in shaping psychological well-being. 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 individuals who had cared for someone with advanced oesophago-gastric cancer in the UK. The interviews were audio-recorded, transcribed verbatim, and analysed using interpretative phenomenological analysis. Results Carers experienced a demanding adjustment process as they took on complex nutritional and emotional responsibilities, often with limited guidance or support. The rapid trajectory and disruption to roles and routines left many feeling overwhelmed and unable to meet their own needs. Ongoing efforts to seek understanding, preserve connection, and focus on the present supported their attempts to manage uncertainty and sustain meaning. Conclusions The findings reflect the unique complexities of advanced oesophago-gastric cancer care, pointing to the need for support models that acknowledge the complex, relational, and often hidden aspects of adjustment to caring in this context.

Keywords

• Informal carers
• Adjustment
• Coping
• Oesophago-gastric cancer
• Upper GI cancer
• Qualitative