Speybroeck Emily L, Petrenko Christie, Tapparello Cristiano, Griffin Katrina, Hargrove Emily, Himmelreich Myles, Lutke Anique, Lutke C J, May Maggie, Zhang Shuo, Looney Janna, Kautz-Turnbull Carson, Rockhold Madeline N
Department of Psychology, University of Rochester, Rochester, NY, USA.
Mt. Hope Family Center, Rochester, NY, USA.
Digit Health. 2024 Jun 14;10:20552076241261458. doi: 10.1177/20552076241261458. eCollection 2024 Jan-Dec.
Fetal alcohol spectrum disorders (FASD) affect the health and development of people across the lifespan. Adults with FASD experience significant barriers to care. Accessible and scalable solutions are needed. In partnership with members of the International Adult Leadership Collaborative of FASD Changemakers, an international group of adults with FASD, we developed a mobile health (mHealth) application based on self-determination theory (SDT), called "My Health Coach," to promote self-management and health advocacy.
This project follows an established user-centered design approach to app development and evaluation, allowing for feedback loops promoting iterative change. Research staff and ALC members co-led online focus groups ( = 26) and an online follow-up survey ( = 26) with adults with FASD to elicit feedback on completed design prototypes. Focus group transcriptions and surveys underwent systemic thematic and theoretical framework analysis.
Analyses show overall positive impressions of the My Health Coach app. Participants were enthusiastic about the proposed features and tools the app will provide. Discussions and free responses revealed SDT constructs (autonomy, competence, relatedness) are a strong fit with participants' perceived outcomes shared in their evaluation of the prototype. Interesting recommendations were made for additional features that would further promote SDT constructs.
This project demonstrates advantages of community-engaged partnerships in FASD research. Adults with FASD have a strong interest in scalable mHealth tools and described the acceptability of our initial design. App features and tools promoted SDT constructs.
胎儿酒精谱系障碍(FASD)会影响人的一生的健康和发育。患有FASD的成年人在获得护理方面存在重大障碍。需要可及且可扩展的解决方案。我们与国际FASD变革推动者成人领导力协作组织(一个由患有FASD的成年人组成的国际团体)的成员合作,基于自我决定理论(SDT)开发了一款名为“我的健康教练”的移动健康(mHealth)应用程序,以促进自我管理和健康倡导。
本项目遵循既定的以用户为中心的应用程序开发和评估方法,允许通过反馈循环促进迭代变化。研究人员和协作组织成员共同主导了针对患有FASD的成年人的在线焦点小组(n = 26)和在线后续调查(n = 26),以获取对已完成设计原型的反馈。焦点小组记录和调查进行了系统的主题和理论框架分析。
分析显示对“我的健康教练”应用程序总体印象良好。参与者对该应用程序将提供的拟议功能和工具充满热情。讨论和自由回答表明,自我决定理论的构成要素(自主性、能力、关联性)与参与者在对原型的评估中分享的感知结果非常契合。针对可进一步促进自我决定理论构成要素的其他功能提出了有趣的建议。
本项目展示了社区参与的伙伴关系在FASD研究中的优势。患有FASD的成年人对可扩展的移动健康工具有着浓厚兴趣,并描述了我们初始设计的可接受性。应用程序的功能和工具促进了自我决定理论的构成要素。