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探索医疗保健消费者对将营养纳入常规多发性硬化症护理的看法:一项定性研究。

Exploring the Perspectives of Healthcare Consumers Towards the Integration of Nutrition in Routine Multiple Sclerosis Care: A Qualitative Study.

作者信息

Allogmanny Shoroog, Stefoska-Needham Anita, Probst Yasmine

机构信息

School of Medical, Indigenous and Health Sciences, Faculty of Science, Medicine and Health, University of Wollongong, Wollongong, Australia.

Clinical Nutrition Department, College of Applied Medical Sciences, Taibah University, Madinah, Saudi Arabia.

出版信息

J Hum Nutr Diet. 2025 Apr;38(2):e70042. doi: 10.1111/jhn.70042.

Abstract

BACKGROUND

People living with multiple sclerosis (plwMS) expect to receive nutrition information from healthcare professionals (HCPs), to self-manage their disease. This study aimed to explore plwMS' experiences with nutrition-related care and generate an understanding of their needs and preferences for how it could be delivered in routine care.

METHODS

This qualitative study, informed by an interpretive phenomenological approach, was undertaken using online focus groups with Australian adults living with MS. The discussions were recorded and transcribed verbatim. Transcribed data were analysed using an inductive, reflexive thematic analysis framework.

RESULTS

Twenty-five plwMS participated in one of six focus group discussions. Three key themes and seven subthemes representing participants' experiences and needs were generated: (1) nutrition guidance is overlooked in routine MS care due to HCPs prioritising medication over nutrition, resulting in the perception that plwMS are their own nutrition educators; (2) routine nutrition guidance is needed, highlighting the desire to receive accessible and meaningful MS-related nutrition information from HCPs with nutrition knowledge for MS; and (3) person-centred care is a priority, highlighting the importance of acknowledging that no one-size-fits-all approach exists for plwMS, providing a holistic approach to the coordination of nutrition care and access to dietetic services.

CONCLUSIONS

This study generated insights into the gaps between the needs and experiences of plwMS with nutrition-related care during routine MS care, which may impact their MS journey. PlwMS seek credible, simple, consistent and MS-specific advice to be provided routinely for their care. Our findings underscore the need for individualised nutrition care from a nutrition-qualified HCP or dietitian.

摘要

背景

多发性硬化症患者(plwMS)期望从医疗保健专业人员(HCPs)那里获得营养信息,以便自我管理疾病。本研究旨在探讨plwMS在营养相关护理方面的经历,并了解他们对于在常规护理中如何提供营养护理的需求和偏好。

方法

本定性研究采用解释现象学方法,通过与澳大利亚成年MS患者进行在线焦点小组讨论开展。讨论内容进行了录音并逐字转录。使用归纳性、反思性主题分析框架对转录数据进行分析。

结果

25名plwMS参与了六个焦点小组讨论中的一个。产生了代表参与者经历和需求的三个关键主题和七个子主题:(1)由于HCPs将药物治疗置于营养之上,营养指导在常规MS护理中被忽视,导致plwMS认为自己是自己的营养教育者;(2)需要常规营养指导,强调希望从具有MS营养知识的HCPs那里获得易于获取且有意义的MS相关营养信息;(3)以患者为中心的护理是优先事项,强调认识到没有一种适用于所有plwMS的方法的重要性,提供全面的方法来协调营养护理和获得饮食服务。

结论

本研究深入了解了plwMS在常规MS护理期间营养相关护理的需求与经历之间的差距,这可能会影响他们的MS病程。plwMS寻求在其护理中常规提供可靠、简单、一致且针对MS的建议。我们的研究结果强调了由具备营养资质的HCP或营养师提供个性化营养护理的必要性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/65d6/11921275/881d29aab386/JHN-38-0-g001.jpg

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