The long-term experience of being a family caregiver of patients surgically treated for oesophageal cancer

Aim: This qualitative study aimed to explore the experience of being family caregivers of patients treated for oesophageal cancer 2 years after treatment. To better understand the family caregiver's situation, a conceptual model was used in the analysis. The results of the study can guide future interventions to support family caregivers of patients treated for oesophageal cancer.Design: A qualitative descriptive study using semi-structured telephone interviews. An abductive approach was used in the analysis to reach deeper knowledge about the family caregivers' experiences and to better understand deeper patterns.Methods: A qualitative study was conducted and included 13 family caregivers of patients surgically treated for oesophageal cancer in Sweden in 2018 who participated in a population-based nationwide cohort study. Individual telephone interviews were held in 2020, 2 years after the patients' surgery. The analysis of the interviews started with an inductive approach using thematic analysis. Thereafter, a deductive approach was used to interpret the findings in relation to the conceptual model, The Cancer Family Caregiving Experience.Results: The most essential/evident stress factors for the family caregivers were distress regarding the patients' nutrition, fear of tumour recurrence and worry about the future. In addition, a transition was experienced, going from a family member to a caregiver, and the many psychosocial aspects of this transition were highlighted during the disease trajectory.Conclusion: Despite, the long-term survival of the patient, family caregivers were still struggling with psychosocial consequences because of the patient's cancer diagnosis and treatment. Furthermore, there is a need to improve supportive interventions for family caregivers during the whole disease trajectory.Impact: The current study includes comprehensive information about the family caregivers' experiences when caring for a patient treated for oesophageal cancer. Family caregivers struggle with the psychosocial consequences of the patient's cancer and worry about tumour recurrence even 2 years after surgery. These findings can be useful in the development of supportive interventions, which may facilitate life for family caregivers.Patient or Public Contribution: The study was discussed and planned together with our research partnership group including patients and family caregivers. In addition, the manuscript was reviewed by some of the members to cross-check the results and discussed them to avoid misinterpretation.

Automated summary

This qualitative study aimed to explore the experience of family caregivers of patients treated for oesophageal cancer 2 years after treatment and to guide future interventions. The most significant stress factors for family caregivers were distress regarding patients' nutrition, fear of tumour recurrence, and worry about the future. Despite long-term patient survival, family caregivers continue to struggle with psychosocial consequences and there is a need to improve support interventions throughout the disease trajectory.