Experiences of being a family caregiver to a patient treated for oesophageal cancer—1 year after surgery

PURPOSE: There is a need to put family caregivers on the cancer survivorship research agenda. Therefore, the aim of this is study is to explore the experiences of being a family caregiver to a patient treated for oesophageal cancer. METHOD: This qualitative study was based on the ongoing nationwide and prospective Oesophageal Surgery on Cancer patients – Adaptation and Recovery study (OSCAR) including patients surgically treated for oesophageal cancer in Sweden and their closest family caregiver. One year after the patient’s surgery, each family caregiver received a self-report questionnaire kit to fill in. For the purpose of this study, the responses to the open-ended question “Is there anything else you would like to share?” were used and analysed by conducting thematic analysis. RESULTS: In total, 112 responses to the open-ended question were transcribed and analysed. The text rendered three themes: Discontinued support from healthcare—mostly a positive experience before surgery and in the acute survivorship phase. However, after discharge from the hospital, the family caregiver felt as though they were left alone, fully responsible for the patient’s care. A changed life—unprepared for life-changing situation after the patient received the cancer diagnosis. A feeling that nothing will ever be the same and like your sense of self is lost. Psychological distress—was described as a feeling of being alone. Family caregivers felt invisible and no longer important to family and friends. The patient was the one that mattered. CONCLUSION: This study indicates that patients and family caregivers would benefit from a more family-centred healthcare, where the patients’ as well as the caregivers’ perspectives would be acknowledged.