Van Dooren Martijn, De Croon Robin, Swillen Ann, Verbert Katrien
Department of Computer Science, KU Leuven, Leuven, Belgium.
Department of Human Genetics, KU Leuven, Leuven, Belgium.
JMIR Hum Factors. 2023 Aug 16;10:e44290. doi: 10.2196/44290.
In families with children with cognitive impairments, both parents and children experience tension and have questions because of a lack of communication and adequate information. Therefore, there is a great need to develop tools that can help bridge the communication gap between patients and caregivers by stimulating conversations and providing psychoeducational tools. mHealth apps show great potential in this context.
The objective of this research is to discover the specific ways young people with cognitive impairments and their families interact with mHealth apps in the context of bridging the communication gap. This newly discovered information leads to potentially more impactful mHealth interventions in the future. Therefore, this paper documents the design and development of a mHealth app for a specific group of people with cognitive impairments-people with 22q11 deletion syndrome (22q11 DS)-and their caregivers, as well as key learnings from the evaluation of this app.
An iterative, user-centered design approach is used to design and develop the app. Design and evaluation happens in 2 phases. During the design phase, feedback is gathered from 2 medical experts and 3 human computer interaction (HCI) experts using a low-fidelity paper prototype. During the evaluation phase, feedback is gathered from 8 families with a child with 22q11 DS using a fully working proof of concept. This phase consists of a semistructured interview, a 2-4-week trial period, and a concluding semistructured interview.
The evaluation results of the fully working proof of concept led to design recommendations related to four different topics: (1) overcoming usage barriers, (2) stimulating conversation through a mHealth app, (3) providing information, and (4) bringing continual added value. Results are presented according to six different categories obtained in a thematic analysis: (1) feedback about the app "as is," (2) difficulties, (3) comparison between physical and digital tool, (4) extensions, (5) intention, and (6) other.
In this research, the need for apps that help bridge the communication gap between a person with cognitive impairment and their caregiver is confirmed. All participating families express their gratitude and mention the added value for other families. Therefore, it is highly encouraged for clinics and institutions to take action and develop an app to be used in practice. Furthermore, considerations when developing for people with 22q11 DS, or more broadly, people with cognitive impairments, are proposed. First, one should keep design principles in mind to overcome usage barriers. Next, recognition is a key concept when stimulating conversations through mobile apps. Third, information should be provided by a trusted source, and more than just clinical information can be considered valuable. Finally, having the possibility of using a digital tool that can be personalized brings continual added value.
在有认知障碍儿童的家庭中，由于缺乏沟通和足够的信息，父母和孩子都会感到紧张并产生疑问。因此，迫切需要开发一些工具，通过促进对话和提供心理教育工具来帮助弥合患者与护理人员之间的沟通差距。在这种情况下，移动健康应用程序显示出巨大的潜力。
本研究的目的是发现认知障碍青少年及其家庭在弥合沟通差距的背景下与移动健康应用程序互动的具体方式。这些新发现的信息可能会在未来带来更有影响力的移动健康干预措施。因此，本文记录了一款针对特定认知障碍人群——22q11缺失综合征（22q11 DS）患者及其护理人员的移动健康应用程序的设计与开发，以及对该应用程序评估的关键经验教训。
采用迭代式、以用户为中心的设计方法来设计和开发该应用程序。设计和评估分两个阶段进行。在设计阶段，使用低保真纸质原型从2名医学专家和3名人机交互（HCI）专家那里收集反馈。在评估阶段，使用一个可完全运行的概念验证从8个有22q11 DS患儿的家庭收集反馈。这个阶段包括一次半结构化访谈、一个2至4周的试验期以及一次总结性半结构化访谈。
可完全运行的概念验证的评估结果产生了与四个不同主题相关的设计建议：（1）克服使用障碍；（2）通过移动健康应用程序促进对话；（3）提供信息；（4）带来持续的附加价值。结果根据主题分析中获得的六个不同类别呈现：（1）关于应用程序“现状”的反馈；（2）困难；（3）物理工具与数字工具的比较；（4）扩展；（5）意图；（6）其他。
在本研究中，证实了需要有助于弥合认知障碍者与其护理人员之间沟通差距的应用程序。所有参与的家庭都表达了感激之情，并提到了对其他家庭的附加价值。因此，强烈鼓励诊所和机构采取行动，开发一款可在实践中使用的应用程序。此外，还提出了为22q11 DS患者或更广泛地说为认知障碍患者开发应用程序时的注意事项。首先，应牢记设计原则以克服使用障碍。其次，在通过移动应用程序促进对话时，认知是一个关键概念。第三，信息应由可靠来源提供，并不仅仅局限于临床信息才被认为有价值。最后，使用可个性化的数字工具的可能性会带来持续的附加价值。
