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首页> 外文期刊>JMIR mHealth and uHealth >Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews
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Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews

机译：使青少年特发性关节炎患者能够更好地与家人和护理团队进行沟通：半结构式访谈的内容分析

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Background Young people living with juvenile idiopathic arthritis (JIA) face a number of communication barriers for achieving optimal health as they transition from pediatric care into adult care. Despite growing interest in mobile or wireless technologies to support health (mHealth), it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies. Objective This study aims to examine how an mHealth patient support system (mPSS) might foster partnership between young people living with JIA, their families, and care teams. Methods Semistructured interviews with young people (5-15 years old), their families, and JIA care teams were conducted using researcher-developed interviews guides. Transcribed data were qualitatively analyzed using conventional content analysis. Results We conducted semistructured interviews with 15 young people, their parents, and 4 care team members. Content analysis revealed the potential of an mPSS to support productive dialogue between families and care teams. We identified four main themes: (1) young people with JIA face communication challenges, (2) normalizing illness through shared experience may improve adherence, (3) partnership opens windows into illness experiences, and (4) readiness to engage appears critical for clinic implementation. Conclusions A human-centered mPSS design that offers JIA patients the ability to track personally relevant illness concerns and needs can enhance communication, generate consensus-based treatment decisions, and improve efficiency and personalization of care. Technology that supports continuous learning and promotes better understanding of disease management may reduce practice burden while increasing patient engagement and autonomy in fostering lasting treatment decisions and ultimately supporting personalized care and improving outcomes.
机译：背景技术青年特发性关节炎（JIA）的青年人从儿科护理向成人护理过渡时，面临许多实现最佳健康的沟通障碍。尽管人们越来越关注支持健康的移动或无线技术（mHealth），但尚不清楚这些参与工具如何支持年轻人，其家庭和护理团队以优化基于偏爱的治疗策略。目的本研究旨在探讨mHealth患者支持系统（mPSS）如何促进与JIA一起生活的年轻人，他们的家人和护理团队之间的伙伴关系。方法采用研究人员制定的访谈指南，对5-15岁的年轻人，他们的家人和JIA护理团队进行半结构式访谈。转录的数据使用常规的内容分析进行定性分析。结果我们对15位年轻人，他们的父母和4位护理团队成员进行了半结构化访谈。内容分析显示了mPSS支持家庭与护理团队之间富有成效的对话的潜力。我们确定了四个主要主题：（1）患有JIA的年轻人面临沟通挑战;（2）通过共享经验使疾病正常化可能会提高依从性;（3）伙伴关系为疾病体验打开了窗口;（4）做好准备参与对于临床至关重要实施。结论以人为本的mPSS设计为JIA患者提供了追踪与个人相关的疾病关注和需求的能力，可以增强沟通，生成基于共识的治疗决策，并提高护理的效率和个性化。支持持续学习并促进对疾病管理的更好理解的技术可以减轻实践负担，同时增加患者参与度和自主权，以促进持久治疗决策并最终支持个性化护理并改善结果。

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