A Qualitative Study of the Perceived Value of Membership in the Oley Foundation by Home Parenteral and Enteral Nutrition Consumers
Bibliographic record
Abstract
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 the Oley Foundation has lead to positive outcomes for members. 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: What is the value of membership in the Oley Foundation to HPEN consumers and why do they perceive this as valuable? At what point do consumers learn about The Oley Foundation and how are they introduced? 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
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.011 | 0.018 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.010 | 0.009 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.002 | 0.003 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".