Abstract

Aim

To explore what is currently known regarding participation among children and youth with arthrogryposis multiplex congenita (AMC) using empirical studies, gray literature, and YouTube videos. The secondary objectives included identifying activity types, outcome measures used, interventions provided, and barriers and facilitators to participation.

Method

Empirical studies and gray literature were searched through electronic databases and videos were searched on YouTube. Articles and videos pertaining to participation and youth with AMC were included by two reviewers. Data regarding activity types, location, outcomes measures, interventions, and barriers and facilitators to participation was extracted. Data was critically appraised using specific evaluation criteria.

Result

Eleven empirical studies, six gray literature articles and 71 videos met the inclusion criteria. The most common activity types reported in the empirical studies and YouTube videos were active-physical, social, and skill-based activities. Outcome measures included evaluations and questionnaires, none of which were designed to address participation. Interventions did not target participation although the environments could affect participation.

Conclusion

The paucity of research indicates a need for future studies of participation in this population. Interventions should target participation and address environmental barriers. Videos provide insight for clinicians, youth, and families to help promote participation in the natural environment.

中文翻译：

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多发性先天性关节炎儿童的参与：范围回顾

摘要

目标

使用实证研究，灰色文献和YouTube视频，探索关于多发性先天性关节炎（AMC）的儿童和青少年之间参与的当前已知信息。次要目标包括确定活动类型，使用的结果度量，提供的干预措施以及参与的障碍和促进者。

方法

通过电子数据库搜索了实证研究和灰色文献，并在YouTube上搜索了视频。两位审稿人收录了有关AMC参与和青年的文章和视频。提取了有关活动类型，位置，成果指标，干预措施以及参与障碍和促进者的数据。使用特定的评估标准对数据进行严格评估。

结果

11项实证研究，6篇灰色文献文章和71部视频符合纳入标准。在经验研究和YouTube视频中报告的最常见的活动类型是基于身体，社会和技能的主动活动。结果措施包括评估和调查表，这些都不是为了解决参与问题而设计的。尽管环境可能会影响参与，但干预并未针对参与。

结论

缺乏研究表明需要对该人群的参与进行进一步的研究。干预应针对参与并解决环境障碍。视频为临床医生，青年和家庭提供了见识，有助于促进他们参与自然环境。