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青少年特发性关节炎青少年自我管理项目的可接受性

Acceptability of an Adolescent Self-Management Program for Juvenile Idiopathic Arthritis.

作者信息

Chomistek Kelsey, Barnabe Cheryl, Naqvi Syeda Farwa, Birnie Kathryn A, Johnson Nicole, Luca Nadia, Miettunen Paivi, Santana Maria J, Stinson Jennifer, Schmeling Heinrike

机构信息

Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.

McCaig Institute for Bone and Joint Health, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.

出版信息

ACR Open Rheumatol. 2022 Feb;4(2):142-151. doi: 10.1002/acr2.11373. Epub 2021 Nov 17.

Abstract

OBJECTIVE

The study objective was to test the acceptability of a self-management program (SMP) for adolescents with juvenile idiopathic arthritis (JIA) focused on disease information, self-management, and social support needs.

METHODS

This study was conducted using inductive qualitative methods to explore the acceptability of an in-person/videoconference SMP. Two groups of four adolescents with JIA (mean age = 13.5, SD = 0.8) and two groups of pediatric rheumatology health care professionals (n = 4, n = 5) participated in four feedback sessions each. The SMP was presented to study participants, and feedback was provided on the content, format, and structure of the program. Thematic analysis was used to analyze the data.

RESULTS

Adolescents felt that the content was appropriate and would be effective in supporting self-management of their arthritis. Participants advised that the trustworthiness of the information would be increased if a rheumatology health care provider facilitated the session. Potential barriers to participation included distance and availability (weekdays and times), but the option for videoconference-based participation was an appropriate solution to both of these issues. Minor changes were made to content and format, and required changes were made to address participant recommendations for improvement.

CONCLUSION

This study confirmed the acceptability of an in-person/videoconference SMP for patients with JIA. Modifications were made to the SMP based on the focus group feedback, and future directions include a pilot randomized controlled trial to assess feasibility and preliminary effectiveness of the program.

摘要

目的

本研究的目的是测试一项针对青少年特发性关节炎(JIA)青少年的自我管理计划(SMP)的可接受性,该计划侧重于疾病信息、自我管理和社会支持需求。

方法

本研究采用归纳定性方法来探索面对面/视频会议形式的SMP的可接受性。两组各四名患JIA的青少年(平均年龄 = 13.5,标准差 = 0.8)和两组儿科风湿病医疗保健专业人员(n = 4,n = 5)分别参加了四次反馈会议。向研究参与者介绍了SMP,并就该计划的内容、形式和结构提供了反馈。采用主题分析法对数据进行分析。

结果

青少年认为该内容合适,并且对支持他们的关节炎自我管理会有效。参与者建议,如果有风湿病医疗保健提供者主持会议,信息的可信度会提高。参与的潜在障碍包括距离和可及性(工作日和时间),但基于视频会议的参与选项是解决这两个问题的合适方案。对内容和形式进行了细微更改,并根据参与者的改进建议进行了必要的更改。

结论

本研究证实了面对面/视频会议形式的SMP对JIA患者的可接受性。根据焦点小组的反馈对SMP进行了修改,未来的方向包括进行一项试点随机对照试验,以评估该计划的可行性和初步有效性。

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Acceptability of an Adolescent Self-Management Program for Juvenile Idiopathic Arthritis.
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