Patients' experiences of supportive care from a long-term perspective after oesophageal cancer surgery -A focus group study. General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.• Users may download and print one copy of any publication from the public portal for the purpose of private study or research.• You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal Take down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim. Purpose: To illuminate patients' experiences of supportive care from a long-term perspective after oesophagectomy or oesofagogastrectomy for cancer.Method: Data collection was carried out using semi-structured focus-group interviews.Seventeen patients were included in the study, divided into 4 focus groups. Data was analysed with conventional qualitative content analysis.
Results:The patients' experiences of supportive care were captured in the theme "The need for a guiding light in the new life situation" and it was shown that support from the health care system as well as from the social network was experienced as important. The patients need support that starts at the hospital and that continues throughout the transition to outpatient care. This support should focus on developing a plan for the future and on providing the patients with information that will enable them to understand their new life situation.
Conclusion:The findings indicated that the patients need a plan for the future, help in navigating the healthcare system and the provision of clear and honest information as well as a healthcare system that better overarches the gap between in and out-patient care. This suggests the need of developing and testing a supportive care programme that is designed according to the patients' needs and with focus on the potential to enhance the patients QOL after this life-changing surgery.