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一项关于儿童期起病的多发性硬化症青少年运动与身体活动的定性研究。

A Qualitative Study of Exercise and Physical Activity in Adolescents with Pediatric-Onset Multiple Sclerosis.

作者信息

Sikes E Morghen, Richardson Emma V, Motl Robert W

出版信息

Int J MS Care. 2019 Mar-Apr;21(2):81-91. doi: 10.7224/1537-2073.2018-033.

Abstract

BACKGROUND

Pediatric-onset multiple sclerosis (POMS) accounts for up to 5% of all multiple sclerosis (MS) cases. Of note, the existing literature regarding physical activity and POMS is sparse, and there is limited insight about the lived experiences of individuals with POMS regarding physical activity, including perceptions of its benefits, barriers, facilitators, and promotion.

METHODS

We conducted a qualitative exploration of physical activity perceptions and experiences and of preferences for a physical activity intervention in eight persons with POMS. Using semistructured interviews and interpretative phenomenological analysis, we crafted numerous themes that provide new knowledge of physical activity experiences and preferences in this population.

RESULTS

The adolescent participants believed that physical activity would be beneficial and important but further believed that it can often be boring and may worsen POMS symptoms. Participants described adequate symptom management, social support, time, and opportunity as facilitators of physical activity, and lack of social support, time, and opportunity as hindrances. The interviewees described that components of a future intervention should focus on education regarding specific exercises, outcomes, and safety during exercise and provide opportunities for social engagement with other individuals with POMS.

CONCLUSIONS

This qualitative study provides novel findings regarding the perceptions and experiences of physical activity in POMS. An important step in crafting an understanding of physical activity behavior in POMS, this study serves to inform the development and delivery of physical activity behavioral interventions.

摘要

背景

儿童期多发性硬化症(POMS)占所有多发性硬化症(MS)病例的比例高达5%。值得注意的是,关于体育活动与POMS的现有文献稀少,对于患有POMS的个体在体育活动方面的生活经历,包括对其益处、障碍、促进因素和推广的认知,了解有限。

方法

我们对8名患有POMS的个体进行了关于体育活动认知与经历以及体育活动干预偏好的定性探索。通过半结构化访谈和解释现象学分析,我们提炼出了众多主题,这些主题为该人群的体育活动经历和偏好提供了新知识。

结果

青少年参与者认为体育活动有益且重要,但也认为它常常很枯燥,可能会加重POMS症状。参与者将充分的症状管理、社会支持、时间和机会描述为体育活动的促进因素,而缺乏社会支持、时间和机会则是阻碍因素。受访者表示,未来干预的组成部分应侧重于关于特定锻炼、锻炼结果和锻炼期间安全的教育,并为与其他患有POMS的个体进行社交互动提供机会。

结论

这项定性研究提供了关于POMS患者体育活动认知与经历的新发现。作为理解POMS患者体育活动行为的重要一步,本研究有助于为体育活动行为干预的制定和实施提供信息。

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