title: A qualitative study of the perceived value of membership in The Oley Foundation by home parenteral and enteral nutrition consumers.
abstract: BACKGROUND
  Support and educational organizations have been shown to improve quality of life of consumers of home nutrition support. One such organization, The Oley Foundation, offers resources for the home parenteral and enteral nutrition (HPEN) consumer. While research has shown proven benefits to HPEN consumers affiliated with The Oley Foundation, no studies have investigated the perceived value of membership to the consumer or the way in which consumers are introduced to the organization.
  
  
  METHODS
  Qualitative methodology was used to gain a deeper understanding of the perceived value of membership in The Oley Foundation. Audiotaped, in-depth, semistructured telephone interviews were conducted to explore participants' experiences with The Oley Foundation and HPEN. Inductive content analysis was used to analyze data and identify themes associated with membership value.
  
  
  RESULTS
  The value of The Oley Foundation lies in programs and resources and the competency, inspiration, normalcy, and advocacy gained from membership, helping individuals adjust to life with HPEN dependency. More than half of participants found the organization through self-initiated Internet searches, but all participants clearly expressed the desire "I wish I knew about it sooner."
  
  
  CONCLUSIONS
  This study identifies the value of membership in The Oley Foundation and the important role the organization has in the lives of HPEN-dependent consumers. Nutrition support clinicians should introduce the organization to patients when the need for HPEN is established and prior to hospital discharge.
authors.affiliation: Department of Nutrition & Food Sciences, University of Rhode Island, Kingston, Rhode Island Katelyn.chopy@gmail.com.
authors.forename: Katelyn
authors.initials: K
authors.lastname: Chopy
authors.affiliation: Rhode Island Hospital and Alpert Medical School of Brown University, Providence, Rhode Island.
authors.forename: Marion
authors.initials: M
authors.lastname: Winkler
authors.affiliation: College of Nursing, University of Rhode Island, Kingston, Rhode Island.
authors.forename: Donna
authors.initials: D
authors.lastname: Schwartz-Barcott
authors.affiliation: Department of Nutrition & Food Sciences, University of Rhode Island, Kingston, Rhode Island.
authors.forename: Kathleen
authors.initials: K
authors.lastname: Melanson
authors.affiliation: Department of Nutrition & Food Sciences, University of Rhode Island, Kingston, Rhode Island.
authors.forename: Geoffrey
authors.initials: G
authors.lastname: Greene
mesh_terms: D000328:Adult; D001290:Attitude; D004750:Enteral Nutrition; D005260:Female; D005582:Foundations; D006801:Humans; D008297:Male; D008875:Middle Aged; D016331:Parenteral Nutrition, Home; D036301:Qualitative Research; D011788:Quality of Life; D012944:Social Support; D055815:Young Adult
keywords: home enteral nutrition; home parenteral nutrition; qualitative research; quality of life