title: Long-term experiences after oesophagectomy/gastrectomy for cancer--a focus group study.
abstract: BACKGROUND
  After surgery for oesophageal or gastric cancer, patients suffer from a variety of problems that affect their physical and mental health. Most previous studies on quality of life after this type of surgery are based on quantitative methods, and no studies to date have focused on the patient's subjective experiences of their quality of life from a long-term perspective.
  
  
  OBJECTIVE
  To illuminate patients' experiences of their quality of life, and how they handle their new life situation, from a long-term perspective, after oesophagectomy or gastrectomy for cancer.
  
  
  METHODS
  This study was carried out in accordance with a descriptive explorative design focusing on the patients' quality of life after surgery for oesophageal/gastric cancer. Data collection was carried out using semi-structured focus group interviews. A total of 17 participants divided into 4 focus groups were included (2-5 years after elective surgery) in the study. Data was analysed with qualitative content analysis.
  
  
  RESULTS
  The results show that the patients' lives are severely hampered by adverse symptoms long time after surgery. The patients experienced the recovery period as a struggle and the theme "When moving on becomes a struggle" was shown to capture the patients' experiences. The main problems that acts as barriers in the patients' new life situation are those connected with nutrition and diarrhea who was shown not only affecting the patients from a physical perspective but also on a social and emotional level. The feeling of losing control of life was shown as a prominent problem and resulted in anxiety and fear about the future.
  
  
  CONCLUSIONS
  This study shows that the patients' quality of life is heavily influenced by the remaining symptoms for a long time after surgery. However the patients ability to handle their new life situation does not only depend on the remaining symptom but on their ability to take control of the new life situation and learn to live life with the symptoms instead of letting the symptoms limit their life. The complex new life situation that the patients meet after surgery motivates the needs of a supportive care programme, focusing on the patients' physical, mental and social needs.
authors.affiliation: Department of Surgery, Skåne University Hospital, Lund, Sweden. Marlene.Malmstrom@med.lu.se
authors.forename: Marlene
authors.initials: M
authors.lastname: Malmström
authors.forename: Bodil
authors.initials: B
authors.lastname: Ivarsson
authors.forename: Jan
authors.initials: J
authors.lastname: Johansson
authors.forename: Rosemarie
authors.initials: R
authors.lastname: Klefsgård
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D004938:Esophageal Neoplasms / Q000534:rehabilitation / Q000601:surgery*; D016629:Esophagectomy / Q000009:adverse effects / Q000534:rehabilitation*; D005260:Female; D017144:Focus Groups; D005500:Follow-Up Studies; D005743:Gastrectomy / Q000009:adverse effects / Q000534:rehabilitation*; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life; D013274:Stomach Neoplasms / Q000534:rehabilitation / Q000601:surgery*; D013548:Sweden