Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, United States.
School of Engineering, Vanderbilt University, Nashville, TN, United States.
JMIR Hum Factors. 2023 Sep 12;10:e45957. doi: 10.2196/45957.
Expedient access to early intervention (EI) systems has been identified as a priority for children with developmental delays, identified disabilities, and other special health care needs. Despite the mandated availability of EI, it remains challenging for families to navigate referral processes and establish appropriate services. Such challenges disproportionately affect families from traditionally underserved communities. Mobile health apps can improve clinical outcomes, increase accessibility to health services, and promote adherence to health-related interventions. Though promising, the implementation of apps within routine care is in its infancy, with limited research examining the components of what makes an effective app or how to reach families most impacted by inequities in health care delivery.
In study 1, we conducted focus groups to access a broad range of perspectives on the process of navigating the EI system, with the dual goals of identifying ways in which a patient-facing app might facilitate this process and identifying barriers to use with traditionally underrepresented and underserved groups. In study 2, focus group findings informed the development of a patient-facing app, which was subsequently tested with a pilot sample of 5 families.
In study 1, the focus groups included 29 participants from 4 shareholder groups. Targeted sampling was used to recruit participants from traditionally underrepresented groups. Focus group questions sought information about barriers families experience as they navigate the EI system, ideal features of a patient-facing app designed to track family engagement with the EI system, and potential barriers. Focus group procedures were informed by the Consolidated Framework for Implementation Research framework. In study 2, a pilot app was developed. The app was tested with a sample of 5 families of young children involved in the EI system. Families provided information on app functionality and usability.
Qualitative analysis revealed a desire for increased communication and information about the process of accessing EI services, potential utility of an app for communication purposes, and clear recommendations for app features. Insights from focus groups were used to inform the development of the Family on Track app and related implementation supports. App features included survey customization, timing and delivery of prompts, and questions related to barriers and service satisfaction. Implementation supports include a visual guide for app installation, resources related to common family questions, and availability of study personnel to guide families through installation and provide ongoing support. Field testing provided preliminary information about app usability, including identifying future directions.
The results of this study could support the development of a new way for the EI system to communicate and connect with families, provide families with a means to communicate satisfaction and frustration, and access the supports they need to be active participants in their child's care.
为有发育迟缓、特定残疾和其他特殊医疗需求的儿童提供便捷的早期干预（EI）系统已被确定为优先事项。尽管强制性地提供 EI，但家庭在寻求转介流程和建立适当服务方面仍然面临挑战。此类挑战对来自传统服务不足社区的家庭的影响更大。移动健康应用程序可以改善临床结果，增加获得医疗服务的机会，并促进对健康相关干预措施的坚持。尽管前景广阔，但应用程序在常规护理中的实施仍处于起步阶段，研究有限，无法确定使应用程序有效的因素以及如何接触到受医疗服务提供不平等影响最大的家庭。
在研究 1 中，我们进行了焦点小组讨论，以广泛了解家庭在 EI 系统中寻求服务的过程，并明确患者导向应用程序可能促进这一过程的方式，以及确定与传统代表性不足和服务不足群体相关的使用障碍。在研究 2 中，焦点小组的发现为患者导向应用程序的开发提供了信息，随后该应用程序在 5 个家庭的试点样本中进行了测试。
在研究 1 中，焦点小组包括来自 4 个股东群体的 29 名参与者。使用靶向抽样招募来自代表性不足群体的参与者。焦点小组问题旨在获取家庭在 EI 系统中导航时所经历的障碍的信息、用于跟踪家庭与 EI 系统互动的患者导向应用程序的理想功能、以及潜在障碍。焦点小组程序由综合实施研究框架提供信息。在研究 2 中，开发了一个试点应用程序。该应用程序在参与 EI 系统的 5 个幼儿家庭中进行了测试。家庭提供了有关应用程序功能和可用性的信息。
定性分析揭示了对获取 EI 服务的过程中增加沟通和信息的渴望、应用程序在沟通方面的潜在效用，以及对应用程序功能的明确建议。焦点小组的见解被用于为“Family on Track”应用程序的开发和相关实施支持提供信息。应用程序的功能包括调查定制、提示的时间和交付，以及与障碍和服务满意度相关的问题。实施支持包括应用程序安装的视觉指南、与常见家庭问题相关的资源，以及为指导家庭安装和提供持续支持的研究人员的可用性。现场测试提供了有关应用程序可用性的初步信息，包括确定未来的方向。
本研究的结果可以支持开发一种新的 EI 系统与家庭进行沟通和联系的方式，为家庭提供一种表达满意和不满的途径，并获得他们积极参与孩子护理所需的支持。
