A Qualitative Study of the Perceived Value of Membership in the Oley Foundation by Home Parenteral and Enteral Nutrition Consumers
Notice bibliographique
Résumé
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
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,011 | 0,018 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,010 | 0,009 |
| Communication savante | 0,004 | 0,004 |
| Science ouverte | 0,001 | 0,004 |
| Intégrité de la recherche | 0,002 | 0,003 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,004 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».