title: Patients' experiences of supportive care from a long-term perspective after oesophageal cancer surgery - a focus group study.
abstract: After oesophageal cancer surgery quality of life (QOL) is severely reduced for a long time. Even though this is a well-documented fact no previous studies have focused on the patients' experiences of supportive care after surgery.
  
  
  OBJECTIVE
  To illuminate patients' experiences of supportive care from a long-term perspective after oesophagectomy or oesophagogastrectomy for cancer.
  
  
  METHODS
  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 healthcare 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 out-patient 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Skåne University Hospital, Lund, Sweden; Department of Surgery, Skåne University Hospital, Lund, Sweden; Lund University, Sweden. Electronic address: Marlene.Malmstrom@med.lu.se.
authors.forename: Marlene
authors.initials: M
authors.lastname: Malmström
authors.forename: Rosemarie
authors.initials: R
authors.lastname: Klefsgård
authors.forename: Jan
authors.initials: J
authors.lastname: Johansson
authors.forename: Bodil
authors.initials: B
authors.lastname: Ivarsson
mesh_terms: D000222:Adaptation, Physiological; D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D003266:Continuity of Patient Care / Q000592:standards / Q000639:trends; D004938:Esophageal Neoplasms / Q000175:diagnosis / Q000523:psychology / Q000601:surgery*; D016629:Esophagectomy / Q000379:methods; D005260:Female; D017144:Focus Groups; D006801:Humans; D007407:Interviews as Topic; D008134:Long-Term Care / Q000592:standards / Q000639:trends; D008297:Male; D008875:Middle Aged; D005791:Patient Care / Q000592:standards / Q000639:trends; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D011788:Quality of Life
keywords: Cancer; Information; Long-term follow-up; Oesophagectomy; Oesophagogastrectomy; Support; Supportive care