Mobile Health Tools to Promote Health in Adults with FASD

移动健康工具促进 FASD 成人健康

• 批准号: 10331884
• 负责人: CHRISTIE Lynn McGee Petrenko
• 金额: $ 13.86万
• 依托单位: UNIVERSITY OF ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-02-01 至 2023-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10331884
• 关键词: Address; Adult; Advocacy; Advocate; Animal Model; Applications Grants; Brain Injuries; Caregivers; Child; Chronic; Collaborations; Communities; Data; Data Collection; Decision Making; Development; Disease; Education; Ensure; Evaluation; Family; Feasibility Studies; Feedback; Fetal Alcohol Exposure; Fetal Alcohol Spectrum Disorder; Fetal alcohol effects; Focus Groups; Frequencies; Future; Goals; Health; Health Promotion; Health Services Accessibility; Healthcare; Imprisonment; Individual; Infrastructure; Internet; Intervention; Knowledge; Language; Life Experience; Literature; Medical; Mental Health Services; Methodology; Misinformation; Mobile Health Application; Morbidity - disease rate; Outcome; Participant; Patient Recruitments; Pattern; Personal Satisfaction; Persons; Population; Process; Provider; Public Health; Reporting; Research; Resources; Sampling; Self Determination; Self Management; Services; Social Work; Social support; Source; Stigmatization; Suggestion; Survey Methodology; Symptoms; System; Technology; Testing; Time; Work; adaptive intervention; barrier to care; base; behavior change; chatbot; cloud based; design; eHealth; effective intervention; efficacy evaluation; evidence base; experience; feasibility testing; feasibility trial; health disparity; health literacy; health management; human model; innovation; intervention effect; literacy; mHealth; novel; online resource; open source; outreach; preference; prototype; psychoeducational; recruit; satisfaction; service providers; skills; success; theories; therapy design; tool

Project Summary/Abstract Adults with fetal alcohol spectrum disorders (FASD) experience many barriers to care. Research on the effects of prenatal alcohol exposure during adulthood is limited and few providers have the knowledge and skills to effectively serve this population. Adults with FASD need reliable and accessible information to inform decision making about their health and well-being. Innovative and scalable solutions are needed. The proposed project aims to meet this need by developing a novel mobile health (mHealth) application (“app”), currently called “My Health Coach,” to directly provide adults with FASD evidence-based education about their condition and tools to promote their own self-management and health advocacy goals. We will build on our success with the Families Moving Forward (FMF) Connect mHealth app for caregivers of younger children with FASD. This will allow us to extend into adulthood and expedite our ability to innovate adaptations tailored for this population. This project will follow a systematic approach to the development and evaluation of the My Health Coach app. We will engage an advisory board of adult leaders with FASD and seek input from key stakeholders at each step of the development and testing process. We will utilize focus group and survey methodologies to solicit input from diverse adults to inform development of the My Health Coach app (Aim 1). We will then conduct a feasibility trial (n=40; Aim 2), including both qualitative and quantitative methodologies to assess the feasibility and user satisfaction and experiences with the app. The results will inform further refinements of the app and estimate effect sizes for future larger-scale trials. Implementation data will also aid in identifying the patterns of app usage that relate to the greatest improvements in outcomes. Study hypotheses include: (1) adults with FASD will appreciate the simple and engaging design of the app, its ability to organize and remind them of information, and its delivery of useful content when they need it; (2) participants will vary in their perceived motivators and barriers for app use; and (3) improvements in pre-post outcomes will be associated with a usage pattern reflecting more routine app usage and a higher frequency of user interactions with the app. Results of this study will further the overall strategic aims of the Collaborative Initiative on FASD (CIFASD), which are to inform and develop effective interventions for FASD. This project integrates two main themes of CIFASD-4, specifically (1) adult health, and (2) using technology to increase access to care. The project will also benefit from resources and collaborations within CIFASD to carry out the proposed work, including integrating findings from other projects into inform intervention content, recruitment of a diverse sample, and outreach and dissemination. This will be the first study to systematically develop and test an intervention for adults with FASD targeting health and well-being. It has the advantage of being scalable and could reduce significant barriers to care, resulting in a greater public health impact.

项目概要/摘要 患有胎儿酒精谱系障碍 (FASD) 的成年人在护理方面遇到许多障碍。 成年期间产前接触酒精的情况是有限的，而且很少有提供者具备以下知识和技能： 有效地为这一人群服务，患有 FASD 的成年人需要可靠且易于获取的信息来为决策提供依据。 需要创新和可扩展的解决方案来改善他们的健康和福祉。 旨在通过开发一种新颖的移动健康（mHealth）应用程序（“app”）来满足这一需求，目前称为“My 健康教练”，直接向成年人提供有关其病情和工具的 FASD 循证教育 促进他们自己的自我管理和健康宣传目标。 Families Moving Forward (FMF) Connect mHealth 应用程序适用于患有 FASD 的幼儿的护理人员。 让我们能够延续到成年期，并加快我们针对这一人群进行创新适应的能力。 该项目将遵循系统方法来开发和评估 My Health Coach 应用程序。 我们将聘请由 FASD 组成的成人领袖顾问委员会，并寻求每个领域主要利益相关者的意见 我们将利用焦点小组和调查方法来征求开发和测试过程的步骤。 收集不同成年人的意见，为“我的健康教练”应用程序的开发提供信息（目标 1）。 可行性试验（n=40；目标 2），包括评估可行性的定性和定量方法 用户对应用程序的满意度和体验。结果将为应用程序的进一步改进提供信息。 估计未来更大规模试验的效果大小也将有助于识别模式。 与结果改善最大相关的应用程序使用情况包括：(1) 成年人。 FASD 会欣赏该应用程序简单且引人入胜的设计，以及它组织和提醒他们的能力 (2) 参与者的认知各不相同 应用程序使用的动机和障碍；(3) 前后结果的改善将与 使用模式反映了更常规的应用程序使用情况以及更高的用户与应用程序交互的频率。 这项研究的结果将进一步推进 FASD 合作倡议 (CIFASD) 的总体战略目标， 该项目旨在为 FASD 提供信息并制定有效的干预措施。 CIFASD-4，特别是 (1) 成人健康，以及 (2) 利用技术增加获得护理的机会。 还受益于 CIFASD 内部的资源和合作来开展拟议的工作，包括 将其他项目的发现整合到干预内容中，招募不同的样本，以及 这将是第一项系统地开发和测试干预措施的研究。 它的优点是可扩展，可以减少患有 FASD 的成年人的健康和福祉。 对护理具有重要意义，从而对公共卫生产生更大的影响。