A Qualitative Study of the Perceived Value of Membership in The Oley Foundation by Home Parenteral and Enteral Nutrition Consumers
A Qualitative Study of the Perceived Value of Membership in The Oley Foundation by Home Parenteral and Enteral Nutrition Consumers
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DOI：
10.1177/0148607114527134
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发表时间：
2015-05-01
影响因子：
3.4
通讯作者：
Greene, Geoffrey
中科院分区：
文献类型：
--
作者：
Chopy, Katelyn;Winkler, Marion;Greene, Geoffrey
背景：事实证明，支持和教育组织可以改善家庭营养支持消费者的生活质量。 Oley 基金会就是这样的组织之一，为家庭肠外和肠内营养 (HPEN) 消费者提供资源。虽然研究已证明 Oley 基金会附属的 HPEN 消费者可以受益，但没有研究调查消费者对会员资格的感知价值或将消费者介绍给该组织的方式。方法：使用定性方法来更深入地了解奥利基金会会员的感知价值。我们进行了录音、深入、半结构化的电话采访，以探索参与者在 Oley 基金会和 HPEN 的经历。归纳内容分析用于分析数据并识别与会员价值相关的主题。结果：Oley 基金会的价值在于项目和资源以及从会员中获得的能力、灵感、常态和宣传，帮助个人适应 HPEN 依赖的生活。超过一半的参与者是通过自发的互联网搜索找到该组织的，但所有参与者都明确表达了我希望早点知道它的愿望。结论：本研究确定了 Oley 基金会会员的价值以及该组织在依赖 HPEN 的消费者的生活中发挥的重要作用。当确定需要 HPEN 时和出院前，营养支持临床医生应向患者介绍该组织。
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.