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儿童和年轻人对使用基于网络的应用程序来支持长期疾病自我管理的看法:一项定性研究。

Children and young people's views on access to a web-based application to support personal management of long-term conditions: a qualitative study.

作者信息

Huby K, Swallow V, Smith T, Carolan I

机构信息

School of Healthcare, University of Leeds, Leeds, UK.

Royal Manchester Children's Hospital, Manchester, UK.

出版信息

Child Care Health Dev. 2017 Jan;43(1):126-132. doi: 10.1111/cch.12394. Epub 2016 Aug 24.

Abstract

BACKGROUND

An exploration of children and young people's views on a proposed web-based application to support personal management of chronic kidney disease at home is important for developing resources that meet their needs and preferences.

METHODS

As part of a wider study to develop and evaluate a web-based information and support application for parents managing their child's chronic kidney disease, qualitative interviews were conducted with 26 children and young people aged 5-17 years. Interviews explored their views on content of a proposed child and young person-appropriate application to support personal management of their condition. Data were analysed by using framework technique and self-efficacy theory.

RESULTS

One overarching theme of Access and three subthemes (information, accessibility and normalization) were identified. Information needed to be clear and accurate, age appropriate and secure. Access to Wi-Fi was essential to utilize information and retain contact with peers. For some, it was important to feel 'normal' and so they would choose not to access any care information when outside of the hospital as this reduced their ability to feel normal.

CONCLUSION

Developing a web-based application that meets children and young peoples' information and support needs will maximize its utility and enhance the effectiveness of home-based clinical caregiving, therefore contributing to improved outcomes for patients.

摘要

背景

探索儿童和青少年对于一款拟议的基于网络的应用程序的看法,该程序旨在支持在家中对慢性肾病进行个人管理,这对于开发满足他们需求和偏好的资源至关重要。

方法

作为一项更广泛研究的一部分,该研究旨在开发和评估一款面向管理孩子慢性肾病的家长的基于网络的信息与支持应用程序,对26名年龄在5至17岁的儿童和青少年进行了定性访谈。访谈探讨了他们对一款拟议的适合儿童和青少年的应用程序内容的看法,该程序旨在支持他们对自身病情的个人管理。采用框架技术和自我效能理论对数据进行了分析。

结果

确定了一个总体主题“获取”以及三个子主题(信息、可及性和正常化)。信息需要清晰准确、适合年龄且安全。接入Wi-Fi对于利用信息和与同龄人保持联系至关重要。对一些人来说,感觉“正常”很重要,所以他们在医院外会选择不获取任何护理信息,因为这会降低他们感觉正常的能力。

结论

开发一款满足儿童和青少年信息与支持需求的基于网络的应用程序将使其效用最大化,并提高家庭临床护理的有效性,从而有助于改善患者的治疗效果。

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