A qualitative study of the perceived value of membership in The Oley Foundation by home parenteral and enteral nutrition consumers.

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." CONCLUSION 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.