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“家庭向前连接”移动健康干预对胎儿酒精谱系障碍患儿照料者的初步可行性:基于系统用户中心设计方法的混合方法评估

Initial Feasibility of the "Families Moving Forward Connect" Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach.

作者信息

Petrenko Christie Lynn McGee, Kautz-Turnbull Carson Christine, Roth Alicia Rose, Parr Jennifer Elizabeth, Tapparello Cristiano, Demir Utku, Olson Heather Carmichael

机构信息

Mt. Hope Family Center, University of Rochester, Rochester, NY, United States.

Department of Electrical and Computer Engineering, University of Rochester, Rochester, NY, United States.

出版信息

JMIR Form Res. 2021 Dec 2;5(12):e29687. doi: 10.2196/29687.

Abstract

BACKGROUND

Fetal alcohol spectrum disorders (FASD) are prevalent neurodevelopmental conditions. Significant barriers prevent family access to FASD-informed care. To improve accessibility, a scalable mobile health intervention for caregivers of children with FASD is under development. The app, called Families Moving Forward (FMF) Connect, is derived from the FMF Program, a parenting intervention tailored for FASD. FMF Connect has 5 components: Learning Modules, Family Forum, Library, Notebook, and Dashboard.

OBJECTIVE

This study assesses the feasibility of FMF Connect intervention prototypes. This includes examining app usage data and evaluating user experience to guide further refinements.

METHODS

Two rounds of beta-testing were conducted as part of a systematic approach to the development and evaluation of FMF Connect: (1) an iOS prototype was tested with 20 caregivers of children (aged 3-17 years) with FASD and 17 providers for the first round (April-May 2019) and (2) iOS and Android prototypes were tested with 25 caregivers and 1 provider for the second round (November-December 2019). After each 6-week trial, focus groups or individual interviews were completed. Usage analytics and thematic analysis were used to address feasibility objectives.

RESULTS

Across beta-test trials, 84% (38/45) of caregivers and 94% (17/18) of providers installed the FMF Connect app. Technological issues were tracked in real time with updates to address problems and expand app functionalities. On use days, caregivers averaged 20 minutes using the app; most of the time was spent watching videos in Learning Modules. Caregiver engagement with the Learning Modules varied across 5 usage pattern tiers. Overall, 67% (30/45) of caregivers posted at least once in the Family Forum. Interviews were completed by 26 caregivers and 16 providers. App evaluations generally did not differ according to usage pattern tier or demographic characteristics. Globally, app users were very positive, with 2.5 times more positive- than negative-coded segments across participants. Positive evaluations emphasized the benefits of accessible information and practical utility of the app. Informational and video content were described as especially valuable to caregivers. A number of affective and social benefits of the app were identified, aligning well with the caregivers' stated motivators for app use. Negative evaluations of user experience generally emphasized technical and navigational aspects. Refinements were made on the basis of feedback during the first beta test, which were positively received during the second round. Participants offered many valuable recommendations for continuing app refinement, which is useful in improving user experience.

CONCLUSIONS

The results demonstrate that the FMF Connect intervention is acceptable and feasible for caregivers raising children with FASD. They will guide subsequent app refinement before large-scale randomized testing. This study used a systematic, user-centered design approach for app development and evaluation. The approach used here may illustrate a model that can broadly inform the development of mobile health and digital parenting interventions.

摘要

背景

胎儿酒精谱系障碍(FASD)是常见的神经发育疾病。存在重大障碍阻碍家庭获得有关FASD的信息并接受相应护理。为提高可及性,正在开发一种针对患有FASD儿童的照料者的可扩展移动健康干预措施。这款名为“家庭向前迈进(FMF)连接”的应用程序源自FMF项目,这是一项专为FASD量身定制的育儿干预措施。FMF连接有五个组件:学习模块、家庭论坛、图书馆、笔记本和仪表板。

目的

本研究评估FMF连接干预原型的可行性。这包括检查应用程序使用数据并评估用户体验,以指导进一步完善。

方法

作为FMF连接开发和评估系统方法的一部分,进行了两轮测试:(1)2019年4月至5月的第一轮测试中,对20名患有FASD儿童(3至17岁)的照料者和17名提供者测试了iOS原型;(2)2019年11月至12月的第二轮测试中,对25名照料者和1名提供者测试了iOS和安卓原型。在每次为期6周的试验后,完成了焦点小组或个人访谈。使用分析和主题分析用于实现可行性目标。

结果

在测试试验中,84%(38/45)的照料者和94%(17/18)的提供者安装了FMF连接应用程序。通过更新实时跟踪技术问题,以解决问题并扩展应用程序功能。在使用日,照料者平均使用该应用程序20分钟;大部分时间花在学习模块中观看视频。照料者对学习模块的参与度在5种使用模式层级中各不相同。总体而言,67%(30/45)的照料者至少在家庭论坛中发布过一次内容。26名照料者和16名提供者完成了访谈。应用程序评估一般不因使用模式层级或人口统计学特征而异。总体而言,应用程序用户非常积极,参与者中积极编码的部分比消极编码的部分多2.5倍。积极评价强调了可获取信息的好处以及应用程序的实际效用。信息和视频内容被描述为对照料者特别有价值。确定了该应用程序的一些情感和社会效益,与照料者所述的使用该应用程序的动机非常契合。用户体验的负面评价一般强调技术和导航方面。根据第一轮测试期间的反馈进行了改进,在第二轮测试中得到了积极反馈。参与者为持续改进应用程序提供了许多有价值的建议,这有助于改善用户体验。

结论

结果表明,FMF连接干预对于抚养患有FASD儿童的照料者来说是可以接受且可行的。它们将指导在大规模随机测试之前对应用程序进行后续完善。本研究在应用程序开发和评估中采用了系统的、以用户为中心的设计方法。这里使用的方法可能说明了一种可广泛为移动健康和数字育儿干预措施的开发提供信息的模式。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2de7/8686405/f659e2a3d221/formative_v5i12e29687_fig1.jpg

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