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首页> 外文期刊>JMIR formative research. >Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study
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Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study

机译：开发数字决策支持工具以帮助残疾儿童参与小儿康复服务：探索性定性研究

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Background: Building a health care system in accordance with the rule of law requires child-centered care, where children and young people, regardless of ability, are allowed to participate in visits with their health care professionals. As part of an overall project focusing on developing and implementing a digital decision support tool to increase the participation of children with disabilities in pediatric rehabilitation, this study brings new knowledge as to how this specific patient group views participation. Objective: The aim of this formative study was to explore the experiences of children and young people with disabilities concerning increasing their participation in the pediatric rehabilitation services. Methods: The formative study had an explorative design, based on a latent qualitative content analysis with an inductive approach. Interviews were conducted with 20 children (6-17 years) and 8 young people (19-30 years) with disabilities about their experiences of participation in pediatric rehabilitation services. Results: A total of 3 categories emerged reflecting the participants’ possibilities of participation in the pediatric rehabilitation services: to feel involved, to feel independent, and to work in partnership. To feel involved meant being listened to and being connected, to feel independent meant being admitted and being enabled, and to work in partnership meant being supported and being able to entrust others with the decision making. With the overall theme moving toward empowerment of children in pediatric rehabilitation , a true feeling of participation can be experienced. Conclusions: The views of children and young people with disabilities are that children should be given the prerequisites for empowerment by being allowed to feel involved and independent as well as to work in partnership to experience true participation in the pediatric rehabilitation services. This finding is essential in the design of a digital decision support tool based on the children’s needs and perspectives.
机译：背景：根据法治建立医疗保健系统需要以儿童为中心的护理，其中允许儿童和年轻人（无论能力如何）参加其医疗保健专业人员的探望活动。作为整个项目的一部分，该项目专注于开发和实施数字决策支持工具，以增加残疾儿童对小儿康复的参与，这项研究为这一特定患者群体如何看待参与带来了新知识。目的：这项形成性研究的目的是探讨残疾儿童和年轻人在增加他们对儿科康复服务的参与方面的经验。方法：形成性研究具有探索性设计，基于归纳法潜在的定性内容分析。对20名残疾儿童（6-17岁）和8名残疾青年（19-30岁）进行了访谈，了解他们参与小儿康复服务的经历。结果：总共出现了3个类别，反映出参与者参与小儿康复服务的可能性：感到参与，感到独立和合作。参与其中意味着被倾听并被联系在一起，感到独立意味着被接纳并被使能，而与他人合作则意味着被支持并能够将决策委托给他人。随着总体主题趋向于在儿科康复中增强儿童的能力，可以体验到真正的参与感。结论：儿童和青年残疾人的观点是，应让儿童感到参与和独立，并通过合作共同体验真正的儿科康复服务，从而赋予儿童赋权的先决条件。这一发现对于根据孩子的需求和观点设计数字决策支持工具至关重要。

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