Abstract
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. 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. 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." 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.
Highlights
Support and educational organizations have been shown to improve quality of life in consumers of home parenteral nutrition (HPN) and home enteral nutrition (HEN)
The research questions this study answered were: 1. What is the value of membership in the Oley Foundation to home parenteral and enteral nutrition (HPEN) consumers and why do they perceive this as valuable?
The results of this study suggest that the value of the Oley Foundation lies in the competency, inspiration, normalcy, and advocacy gained from membership
Summary
Support and educational organizations have been shown to improve quality of life in consumers of home parenteral nutrition (HPN) and home enteral nutrition (HEN). One such organization, The Oley Foundation, offers resources for the home parenteral and enteral nutrition (HPEN) consumer. Home nutrition support is a long-term therapy that provides nutrition intravenously (parenterally) or through the gastrointestinal tract (enterally) when a person is unable to consume or digest enough food to maintain or restore nutrition status and health. Consumers of home parenteral and enteral nutrition (HPEN) have many physical and psycho-social factors influencing their quality of life
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