| Background: 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. Research has shown that membership in the Oley Foundation has been associated with positive outcomes. No studies have determined what services consumers value, how they were introduced to the organization, and how this impacted them individually. This study used qualitative methodology to gain a deeper understanding of the perceived value of membership in the Oley Foundation for HPEN consumers. The research questions this study answered were:;1. What is the value of membership in the Oley Foundation to HPEN consumers and why do they perceive this as valuable?;2. At what point do consumers learn about The Oley Foundation and how are they introduced?;3. What similarities and differences are there between home parenteral nutrition consumers and home enteral nutrition consumers concerning experiences with The Oley Foundation?;Participants: The participants in this study included 13 adults who were depended on HEN (n=6), HPN (n=6), or both HEN and HPN (n=1) and had joined the Oley Foundation within the last two years.;Methods: An investigator conducted audio-taped, one-on-one, in-depth telephone interviews guided by an interview template that included: all elements of informed consent, approval to audio-tape, biographical and demographic information and questions designed to allow for the expression of participants' experiences, opinions and feelings as a member of The Oley Foundation. Each interview was summarized, reviewed by a committee member, and sent to the participant. An investigator conducted follow up interviews to ensure accuracy and illuminate any nuances overlooked or misinterpreted by the interviewer. Content analysis was used to code and group segments of text to identify themes. Emergent themes were used to answer the research questions and develop a model to conceptualize the value members perceive in membership to the Oley Foundation.;Results: The results of this study suggest that the value of the Oley Foundation lies in programs and resources provided and the competency, inspiration, normalcy, and advocacy gained from membership. In this study participants were introduced at a variety of points in time. More than half of participants found the organization on their own. A clear theme that emerged from the discussion of participant's introduction to organization was "I wish I knew about it sooner". While HPN and HEN consumers were quite similar they differed in the concerns they had about drug shortages and insurance coverage, respectively.;Discussion and Conclusion: This study showed that value in the Oley Foundation is based on the competency, inspiration, normalcy, and advocacy membership creates. An emergent theme, "I wish I would have known about it sooner" underscores the need for educating home parenteral and enteral nutrition consumers about organizations like the Oley Foundation. |
