JMIR Publications

ABSTRACT

Background:

Parents of premature infants often face challenges in transitioning from hospital to home, requiring reliable and accessible information to support their caregiving. In the Netherlands, a post-discharge, responsive parenting intervention (TOP program) is standard care for very preterm born infants and their parents. However, parents still indicate unmet information needs. Mobile health (mHealth) interventions have the potential to supplement post-discharge education and empower parents by providing tailored, evidence-based information.

Objective:

The primary objectives of this study were: (1) to develop an information app (e-TOP) for parents of preterm infants and (2) to evaluate its usability.

Methods:

An exploratory two-phase mixed-method design was employed. In Phase 1, the app was developed through iterative focus group discussions with parents of premature infants and TOP interventionists (pediatric physiotherapists). The content of the app was developed through co-creation by professionals and was subsequently refined and adapted to improve its practical use. In Phase 2, parents with a preterm born infant who participated in the TOP-program received access to the e-TOP app for six months. During and after six months, usability was assessed with a range of quantitative and qualitative measurements, including thinking aloud sessions, online analytics, questionnaires including the System Usability Scale (SUS) and semi-structured interviews.

Results:

The collaborative approach with end-users and experts for the development led to a fully functional e-TOP app. Expert review and content validation ensured that information was accurate, accessible, and relevant for parents. For the usability testing, 58 families (116 participants) were recruited, and 69 participants actively used the app. The cumulative e-TOP median (IQR) usage per participant for 26 weeks was 39 minutes (IQR: Q1 8.8 - Q3 53.0). The median number of actions was 64.0 (IQR: 33.5-88.0). The eTOP app received a median SUS score of 75 (IQR: 67.5–80.0), indicating good usability. Participants rated their overall satisfaction with the app with a median of 7.0 (IQR: 7.0–8.0) out of 10. While the app was perceived as useful for finding information on prematurity-specific topics, engagement declined over time. The interviews highlighted a need for improved navigation (e.g., search function), expanded content (e.g. practical exercises, sensory processing), and more interactive features (e.g., chat support, parental community forums).

Conclusions:

The e-TOP app is a valuable, digital resource that can supplement post-discharge care by providing tailored, evidence-based, and accessible information for parents of premature infants. While usability scores were high, engagement trends and retrieved feedback suggested the need for enhanced retention strategies, such as push notifications, time-line based navigation structure, interactive tools, and adding (practical) content. Clinical Trial: ISRCTN65709138