title: Rectal cancer patients' quality of life with a temporary stoma:  shifting perspectives.
abstract: BACKGROUND
  Patients with rectal cancer who have a temporary ostomy report good quality of life despite identifying a number of stoma-related difficulties.
  
  
  OBJECTIVE
  This study aimed to qualitatively explore the experiences of patients with rectal cancer who have a temporary ileostomy to better understand the discordant findings of previous quantitative quality-of-life studies.
  
  
  METHODS
  We conducted in-depth qualitative interviews with patients with stage I to III rectal cancer who underwent sphincter-preserving surgery that resulted in a temporary ileostomy.
  
  
  METHODS
  Twenty-six patients (54% male, median age 54) participated. Sixty-five percent had stage III disease, and 88% received neoadjuvant therapy.
  
  
  METHODS
  Interviews examined preoperative expectations, overall experience, and stoma impact on quality of life. With the use of grounded theory, 2 investigators independently performed line-by-line content analysis to identify key themes. Analysis continued until data saturation.
  
  
  RESULTS
  Two major themes were identified: stoma-related difficulties and perceived response shift. Patients reported difficulty in exercise, sleep, social activities, sexuality, and clothing. Patients' perception of quality of life with a temporary stoma appears to have undergone a response shift through recalibration of their standards for measuring quality of life (internal measurement scale altered by side effects of neoadjuvant/adjuvant treatment, temporary nature of stoma, and accommodation to stoma) and reconceptualization of what "good quality of life" is (stoma difficulties were felt to be less important in comparison with cancer-related mortality).
  
  
  CONCLUSIONS
  Although qualitative research is, by design, not generalizable, these data support our previous quantitative work. This convergence of findings suggests that our data may be representative.
  
  
  CONCLUSIONS
  A temporary ileostomy represents significant difficulties for patients with rectal cancer. However, because of response shift, these difficulties may not be perceived as important to overall quality of life when considered within the context of the cancer experience. Our results can inform preoperative consultations with patients who have rectal cancer to assist in aligning patient expectations of what life with a temporary ileostomy may be like.
authors.affiliation: Department of Surgery, University of Wisconsin, Madison, Wisconsin, USA.
authors.forename: Heather B
authors.initials: HB
authors.lastname: Neuman
authors.forename: Jason
authors.initials: J
authors.lastname: Park
authors.forename: Sarah
authors.initials: S
authors.lastname: Fuzesi
authors.forename: Larissa K
authors.initials: LK
authors.lastname: Temple
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003020:Clothing / Q000523:psychology; D020920:Dyssomnias / Q000209:etiology / Q000523:psychology; D015444:Exercise / Q000523:psychology; D005260:Female; D006801:Humans; D007081:Ileostomy / Q000009:adverse effects / Q000523:psychology*; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D012004:Rectal Neoplasms / Q000473:pathology / Q000601:surgery*; D019529:Sexuality / Q000523:psychology; D058992:Social Participation / Q000523:psychology; D013997:Time Factors