Development of an app to track family engagement with early intervention services: A qualitative study (Preprint)

BACKGROUND Expedient access to early intervention (EI) systems has been identified as a priority for children with developmental delays, identified disabilities, and other special healthcare needs. Despite the mandated availability of EI, it remains challenging for families to navigate referral processes and establish services. Such challenges disproportionately impact families from traditionally underserved communities. Mobile health apps have the potential to improve clinical outcomes, increase accessibility to health services, and promote adherence to health-related interventions. Though promising, 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 healthcare delivery. OBJECTIVE We conducted focus groups with four unique participant groups to access a broad range of perspectives on families’ experiences navigating the EI system, with the dual goals of (1) identifying specific ways in which a patient-facing app might facilitate that process and (2) identifying barriers to its use with traditionally underrepresented and underserved groups. METHODS Focus groups included 29 participants across four groups (family members, clinicians and clinic staff, community providers, experts in health equity). Targeted sampling was used to recruit participants from traditionally underrepresented groups. The specific research questions addressed through the focus groups included (1) what barriers families are currently experiencing as they navigate the EI system; (2) what features a patient-facing app designed to track family engagement with the EI system would need to have to be useful/meaningful for families; and (3) what potential barriers are to such an app’s use and uptake in underserved communities. Focus group questions were informed by the Consolidated Framework for Implementation Research (CFIR) framework. Transcripts were analyzed using qualitative analysis coding methods, including a content analysis and predominately deductive approach guided by the CFIR. RESULTS Qualitative analysis revealed a desire for increased communication and information about the process of accessing EI services, the potential utility of a mobile 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 (FOT) app and related implementation supports. App features (developed in partnership with our university engineering department) 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. CONCLUSIONS Results of this study could support development of a new way for the EI system to communicate and connect with families, providing families with a means to communicate satisfaction and frustration, and access the supports they need to be active participants in their child’s care. CLINICALTRIAL The study was supported by funding from the Children and Youth with Special Healthcare Needs Network (UA6M31101) and the Learning Health Systems Scholars grant (K12 HS026395) from AHRQ/PCORI.