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参与多发性硬化症患者疲劳管理计划的初步研究。

Pilot study of participating in a fatigue management programme for clients with multiple sclerosis.

机构信息

Brothers of Charity (Southern Service), Lota, Glanmire, Ireland.

出版信息

Disabil Rehabil. 2010;32(10):791-800. doi: 10.3109/09638281003656578.

Abstract

PURPOSE

The purpose of this study was to examine the experience of participating in a community-based fatigue management programme for people with multiple sclerosis (MS).

METHOD

Eight people with MS who participated in an 8-week community-based fatigue management programme were interviewed using a semi-structured, open-ended interview protocol. Data were analysed using constant comparative analysis informed by a phenomenological perspective.

RESULTS

Participants experienced ownership, active participation and empowerment. Participants' fatigue was legitimised and validated, and participants described a shared experience and shared voice. Outcomes identified by participants included: lifestyle and occupational changes, altered thinking about fatigue and the development of social supports.

CONCLUSION

Participants' experience of the community-based fatigue management programme was described in positive terms with unanticipated benefits and outcomes described.

摘要

目的

本研究旨在探讨参与基于社区的多发性硬化症(MS)人群疲劳管理计划的体验。

方法

采用半结构化开放式访谈方案,对 8 名参与为期 8 周的基于社区的疲劳管理计划的 MS 患者进行访谈。数据采用现象学视角下的恒定性比较分析进行分析。

结果

参与者体验到了所有权、积极参与和赋权。参与者的疲劳得到了认可和验证,他们描述了一种共同的体验和共同的声音。参与者确定的结果包括:生活方式和职业的改变、对疲劳的思维方式的改变以及社会支持的发展。

结论

参与者对基于社区的疲劳管理计划的体验以积极的方式描述,并描述了意想不到的益处和结果。

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