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少女特发性关节炎患者参与活动的体验:一项定性研究。

Experiences of participation in activities among girls with juvenile idiopathic arthritis: A qualitative study.

机构信息

Women´s Health and Allied Health Professionals Theme, Medical Unit Occupational Therapy and Physiotherapy, Karolinska University Hospital, Stockholm, Sweden.

Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.

出版信息

J Child Health Care. 2023 Dec;27(4):599-611. doi: 10.1177/13674935221083167. Epub 2022 Apr 10.

Abstract

This study aimed to describe how girls with juvenile idiopathic arthritis (JIA) experience participation in activities in relation to their disease. Semi-structured interviews of eight girls with JIA in ages 12-15 were recorded and transcribed as a whole. Data have been analysed with qualitative content analysis. Participation was influenced by disease symptoms, which could result in absence and exclusion from participation in activities. The experience of participation was affected by the participant's choice of using strategies and making adjustments during activities. Social environment could both increase and decrease participation through treatment and type of knowledge about the disease. Also the physical environment could affect participation due to the climate or road and ground conditions. We could conclude that the experience of participation among girls with JIA was affected by disease symptoms, perceptions of selves, disease and the use of strategies, and also the social and physical environment. This indicates the need to address participation in clinical practice and the importance to include different health professionals, teachers and other personnel involved in the child's schooling.

摘要

本研究旨在描述幼年特发性关节炎(JIA)女孩如何体验与疾病相关的活动参与。对 8 名 12-15 岁 JIA 女孩的半结构化访谈进行了记录和转录。使用定性内容分析对数据进行了分析。参与受到疾病症状的影响,这可能导致参与活动的缺席和排斥。参与者选择在活动中使用策略和进行调整的体验会受到影响。社会环境可以通过治疗和对疾病的了解程度来增加或减少参与度。此外,由于气候或道路和地面条件,物理环境也可能会影响参与度。我们可以得出结论,JIA 女孩的参与体验受到疾病症状、自我认知、疾病和策略使用的影响,同时也受到社会和物理环境的影响。这表明有必要在临床实践中解决参与问题,并强调需要纳入不同的健康专业人员、教师和其他参与孩子教育的人员。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/34a7/10676619/905228eac236/10.1177_13674935221083167-fig1.jpg

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