title: An exploration of quality of life and the experience of living with home parenteral nutrition.
abstract: BACKGROUND
  The aim of this research was to achieve a deeper understanding of the experience of adults living with home parenteral nutrition (PN) and to define their quality of life (QOL).
  
  
  METHODS
  The research design was qualitative, using content and interpretative phenomenological analysis. The sample included adults with intestinal failure, stratified by length of home PN dependency. Sampling continued until data saturation was achieved. A second reviewer independently coded a subset of narratives (kappa = 0.684).
  
  
  RESULTS
  Participants included 24 adults receiving home PN because of short bowel syndrome (95.8%) and pseudo-obstruction (4.2%). Twenty-five percent received PN for < 2 years, 20.8% for 2-5 years, 25% for 5-10 years, and 29.2% for > 10 years. Respondents viewed home PN as a "lifeline" and "nutritional safety net." QOL was defined as "enjoying life"; "being happy, satisfied, or content with life"; and "being able to do what you want to do, when you want to do it." Participants described their QOL as "good" to "wonderful." Lifestyle was affected by health, stamina, diarrhea, having an ostomy, and the amount of flexibility there was with the infusion schedule. There was a strong desire to achieve normalcy in life among all participants.
  
  
  CONCLUSIONS
  Qualitative methodology provides new insights and richness of data regarding adults receiving home PN. The positive description of QOL in this study contrasts with the published nutrition literature. It is important for healthcare practitioners to understand and discuss the realities of home PN and lifestyle adaptation.
authors.affiliation: Department of Surgery/Nutrition Support, Rhode Island Hospital, Providence, Rhode Island 02903, USA. mwinkler@lifespan.org
authors.forename: Marion F
authors.initials: MF
authors.lastname: Winkler
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Hagan
authors.forename: Terri
authors.initials: T
authors.lastname: Wetle
authors.forename: Carol
authors.initials: C
authors.lastname: Smith
authors.forename: Julie O'Sullivan
authors.initials: JO
authors.lastname: Maillet
authors.forename: Riva
authors.initials: R
authors.lastname: Touger-Decker
mesh_terms: D000328:Adult; D001294:Attitude to Health; D003112:Colonic Pseudo-Obstruction / Q000523:psychology / Q000628:therapy; D003967:Diarrhea; D005260:Female; D006262:Health; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D033262:Narration; D010030:Ostomy; D016562:Parenteral Nutrition, Home Total / Q000523:psychology*; D017060:Patient Satisfaction; D010807:Physical Endurance; D011788:Quality of Life; D012778:Short Bowel Syndrome / Q000523:psychology / Q000628:therapy