评估多发性硬化症患者数字营养教育计划的体验:一项定性研究

RD Russell, J He, LJ Black, A Begley
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摘要

背景多发性硬化症(MS)是一种复杂的免疫介导疾病,目前尚无根治方法。越来越多的证据表明,饮食可减轻多发性硬化症的部分症状并促进疾病的发展,我们之前开发并测试了针对多发性硬化症患者的数字营养教育项目的可行性。本研究旨在探讨影响参与数字营养教育计划的因素,包括影响改变饮食行为的能力、机会和动机的特征。研究方法 对完成部分或全部课程的多发性硬化症患者进行了半结构化访谈,直到达到数据饱和。采用主题分析法对访谈进行归纳分析。根据 COM-B 行为改变模型对主题进行演绎映射。结果 对完成全部计划(10 人)或部分计划(6 人)的参与者进行了 16 次访谈。出现了四个主题:1)获取和验证营养知识;2)时间和社会支持的影响;3)及早参与以改善健康状况;以及 4)核算食品扫盲经验。讨论 这是首个为多发性硬化症患者提供适当行为支持的在线营养计划。它强调了针对特定疾病的循证营养教育对于支持多发性硬化症患者改变饮食习惯的重要性。结论 在为多发性硬化症患者和其他神经系统疾病患者设计教育项目时,医疗保健专业人员和项目设计者应考虑灵活的交付方式和建立同伴支持,以满足参与者的需求和面临的挑战。
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Evaluating experiences in a digital nutrition education program for people with multiple sclerosis: a qualitative study
Background Multiple sclerosis (MS) is a complex immune-mediated disease with no currently known cure. There is growing evidence to support the role of diet in reducing some of the symptoms and disease progression in MS, and we previously developed and tested the feasibility of a digital nutrition education program for people with MS. Objective The aim of this study was to explore factors that influenced engagement in the digital nutrition education program, including features influencing capability, opportunity, and motivation to change their dietary behaviours. Methods Semi-structured interviews were conducted with people who MS who completed some or all of the program, until data saturation was reached. Interviews were analysed inductively using thematic analysis. Themes were deductively mapped against the COM-B behaviour change model. Results 16 interviews were conducted with participants who completed all (n=10) or some of the program (n=6). Four themes emerged: 1) Acquiring and validating nutrition knowledge; 2) Influence of time and social support; 3) Getting in early to improve health; and 4) Accounting for food literacy experiences. Discussion This is the first online nutrition program with suitable behavioural supports for people with MS. It highlights the importance of disease-specific and evidence-based nutrition education to support people with MS to make dietary changes. Acquiring nutrition knowledge, coupled with practical support mechanisms such as recipe booklets and goal-setting, emerged as crucial for facilitating engagement with the program. Conclusions When designing education programs for people with MS and other neurological conditions, healthcare professionals and program designers should consider flexible delivery and building peer support to address the needs and challenges faced by participants.
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