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风湿性疾病和疲劳:活动节奏控制小组中参与者的体验。

Rheumatic disease and fatigue: Participants' experiences of an activity-pacing group.

机构信息

Department of Occupational Therapy, Orthopedic Clinic, Haukeland University Hospital, Bergen, Norway.

Department of Health and Functioning, Western Norway University of Applied Sciences, Bergen, Norway.

出版信息

Scand J Occup Ther. 2023 Jul;30(5):628-639. doi: 10.1080/11038128.2021.1998609. Epub 2021 Nov 9.

Abstract

BACKGROUND

Fatigue is a common symptom of inflammatory rheumatic disease and has a great impact on everyday life. Activity-pacing is proposed as an intervention to increase participation in meaningful activities.

AIMS

To explore participants' experiences with an activity-pacing group, how participants perceived self-managing everyday life after group attendance, and their reflections on unmet needs that could enhance self-management of everyday life with fatigue.

MATERIALS AND METHODS

Semi-structured interviews were conducted with 10 participants who had attended an activity-pacing group. Thematic analyses were conducted.

FINDINGS

Prior to group attendance, the participants expressed an awareness of their lack of knowledge of fatigue. Through group attendance, they increased their understanding of fatigue and their ability to apply strategies to better manage everyday life. Participants found it difficult to balance their energy use and realised that implementing activity-pacing strategies takes time. Therefore, they requested follow-up sessions with the activity-pacing group. They also desire that rheumatologists pay more attention to and acknowledge fatigue.

CONCLUSIONS AND SIGNIFICANCE

Enhancing the understanding of fatigue and how to manage everyday life with fatigue, appears to be important. Group interventions led by occupational therapists and with a focus on activity-pacing may be a suitable approach. Follow-up sessions are recommended.

摘要

背景

疲劳是炎症性风湿性疾病的常见症状,对日常生活有很大影响。活动节奏控制被提议作为一种干预措施,以增加参与有意义的活动。

目的

探索参与者对活动节奏控制小组的体验,参与者如何看待参加小组后自我管理日常生活,以及他们对未满足需求的反思,这些需求可以增强疲劳时自我管理日常生活的能力。

材料和方法

对参加过活动节奏控制小组的 10 名参与者进行了半结构化访谈。进行了主题分析。

结果

在参加小组之前,参与者表示意识到自己对疲劳缺乏了解。通过参加小组,他们增加了对疲劳的理解以及应用策略来更好地管理日常生活的能力。参与者发现很难平衡自己的能量使用,并且意识到实施活动节奏控制策略需要时间。因此,他们要求与活动节奏控制小组进行后续会议。他们还希望风湿病医生更加关注并承认疲劳。

结论和意义

增强对疲劳的理解以及如何管理疲劳时的日常生活似乎很重要。由职业治疗师主导、关注活动节奏控制的小组干预可能是一种合适的方法。建议进行后续会议。

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