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关于囊性纤维化成人远程医疗运动干预的偏好和观点:一项定性研究。

Preferences and perspectives regarding telehealth exercise interventions for adults with cystic fibrosis: A qualitative study.

机构信息

Department of Physiotherapy, Alfred Health, Melbourne, Victoria, Australia.

Department of Respiratory Medicine, Alfred Health, Melbourne, Victoria, Australia.

出版信息

Pediatr Pulmonol. 2024 May;59(5):1217-1226. doi: 10.1002/ppul.26889. Epub 2024 Jan 30.

Abstract

OBJECTIVE

Physical activity and exercise are key components in the management of cystic fibrosis (CF). Completing exercise programs online may minimize the risk of cross-infection and increase access for people with CF. This study aimed to understand the perspectives of people with CF regarding intervention content for a telehealth exercise program.

METHODS

Individual semistructured qualitative interviews were conducted in adults with CF purposefully sampled for age, disease severity, and social demographics. Interviews were recorded, transcribed verbatim, and analyzed thematically by two researchers independently.

RESULTS

Participants were 23 adults with CF (14 females) aged from 21 to 60 years. Three major themes (subthemes) were generated: "Personalizing components to an exercise program" (customizing an exercise program to the individual person and their unique health and exercise needs, enjoyment and variety of exercise activities, accessibility and exercise fitting around competing demands or commitments), "The importance of maintaining connections" (challenges regarding face-to-face interactions for people with CF, accountability of scheduled exercise sessions with others, shared experiences between people with CF and specialist support from the CF care team), and "Monitoring health and exercise" (perception of health status and monitoring and recording exercise participation and health).

CONCLUSION

This study provides important information regarding the preferences of adults with CF for telehealth exercise interventions. Interventions should be tailored to the individual person with CF, include an opportunity to maintain connections with peers and the CF multidisciplinary team, and provide a method to monitor progress over time.

摘要

目的

体育活动和锻炼是囊性纤维化(CF)管理的关键组成部分。在线完成锻炼计划可以最大限度地降低交叉感染的风险,并增加 CF 患者的参与机会。本研究旨在了解 CF 患者对远程健康锻炼计划干预内容的看法。

方法

对 CF 患者进行了个体半结构化定性访谈,根据年龄、疾病严重程度和社会人口统计学特征进行了有针对性的抽样。访谈进行了录音、逐字转录,并由两名研究人员独立进行主题分析。

结果

参与者为 23 名年龄在 21 至 60 岁之间的 CF 成年患者(14 名女性)。产生了三个主要主题(子主题):“使锻炼计划个性化”(根据个人的独特健康和锻炼需求、对锻炼活动的享受和多样性、可及性和适合于竞争需求或承诺的锻炼,定制锻炼计划)、“保持联系的重要性”(对于 CF 患者,面对面互动的挑战、与他人安排锻炼课程的责任、CF 患者之间的共同经历以及 CF 护理团队的专家支持)和“监测健康和锻炼”(对健康状况的感知以及监测和记录锻炼参与和健康状况)。

结论

本研究提供了有关 CF 成年患者对远程健康锻炼干预措施偏好的重要信息。干预措施应针对 CF 个体患者量身定制,包括与同龄人以及 CF 多学科团队保持联系的机会,并提供随时间监测进展的方法。

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