Emily L. Speybroeck , Christie Petrenko , Cristiano Tapparello , Cody Romanos , Katrina Griffin , Emily Hargrove , Myles Himmelreich , Anique Lutke , CJ Lutke , Maggie May , Carson Kautz-Turnbull , Madeline N. Rockhold , Julianne Myers
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引用次数: 0
Abstract
Objectives
Fetal alcohol spectrum disorders (FASD) affect health and development across the lifespan. Adults with FASD experience significant barriers to care. Together with the International Adult Leadership Collaborative of FASD Changemakers, an international group of self-advocates, a mobile health application was co-created to support self-management and health advocacy. This feasibility trial assesses the My Health Coach app to determine readiness for a larger randomized controlled trial (RCT).
Methods
Eligibility for this online trial included adults with FASD or known prenatal alcohol exposure who had conversational and literacy fluency in English. Adults received the app for 6 weeks on their personal smartphones (iOS or Android). Pre- and post-intervention assessments included quality of life, basic psychological needs based on self-determination theory constructs (autonomy, relatedness, competency), self-management, and app acceptability. User experience interviews were also conducted post-intervention. Usage and app crashes were monitored. Study objectives assessed feasibility of the trial (recruitment, attrition, study procedures, measure sensitivity), intervention (technical functionality, acceptability), and implementation (app usage).
Results
Recruitment strategies proved sufficient with 95 adults screened and 43 deemed eligible. Analyses identified variables related to attrition. Study procedures were considered acceptable. Measures showed good acceptability and psychometric properties. The My Health Coach app was functional and acceptable to participants. Several refinements to trial infrastructure and construct measurement were identified for future RCTs.
Conclusions
The My Health Coach app is feasible and shows promise in supporting adults with FASD with condition management. Trial results prove sufficient to proceed with a larger RCT to test efficacy.
目的胎儿酒精谱系障碍(FASD)影响胎儿一生的健康和发育。患有FASD的成年人在护理方面有很大的障碍。与国际自我倡导组织FASD Changemakers国际成人领导协作组织共同创建了一个移动健康应用程序,以支持自我管理和健康倡导。这项可行性试验评估了My Health Coach应用程序,以确定是否准备进行更大规模的随机对照试验(RCT)。方法本在线试验的对象包括患有FASD或已知产前酒精暴露的成年人,他们具有流利的英语会话和读写能力。成年人在他们的个人智能手机(iOS或Android)上使用该应用程序6周。干预前后的评估包括生活质量、基于自我决定理论构建的基本心理需求(自主性、相关性、能力)、自我管理和应用程序可接受性。干预后还进行了用户体验访谈。使用情况和应用程序崩溃被监控。研究目标评估了试验的可行性(招募、减员、研究程序、测量灵敏度)、干预(技术功能、可接受性)和实施(应用程序使用)。结果招募策略是充分的,筛选了95名成人,43名被认为符合条件。分析与人员流失相关的变量。研究程序被认为可以接受。测量结果具有良好的可接受性和心理测量特性。“我的健康教练”应用程序功能齐全,被参与者接受。为未来的随机对照试验确定了对试验基础设施和构造测量的若干改进。结论My Health Coach应用程序在支持FASD成人病情管理方面是可行的。试验结果证明足以进行更大的随机对照试验来测试疗效。
期刊介绍:
Research In Developmental Disabilities is aimed at publishing original research of an interdisciplinary nature that has a direct bearing on the remediation of problems associated with developmental disabilities. Manuscripts will be solicited throughout the world. Articles will be primarily empirical studies, although an occasional position paper or review will be accepted. The aim of the journal will be to publish articles on all aspects of research with the developmentally disabled, with any methodologically sound approach being acceptable.