Advancing early intervention for preterm infants The innovation-impact cycle of the TOP program

Preterm birth is associated with an increased risk of developmental and socio-emotional difficulties in children, while parents often experience stress and insecurity after hospital discharge. In the Netherlands, post-discharge support is available through the TOP program, a home-based early responsive parenting intervention for families with very preterm infants.
This thesis aimed to further strengthen the impact of the TOP program through three approaches: 1) improving execution quality through fidelity monitoring; 2) expanding the program for moderate preterm born infants and very preterm born toddlers; and 3) adding digital support.
First, a fidelity assessment instrument for the TOP program (FITT) was developed through an iterative co-creation process involving researchers, educators, and TOP interventionists. . The tool demonstrated good reliability and provided a structured method to evaluate adherence, competence, and overall quality of intervention delivery.
Second, the adapted TOP intervention for moderate preterm infants was found to be feasible, and preliminary findings showed positive changes in parental sensitivity, reflective functioning, self-efficacy, and age-appropriate infant motor and socio-emotional development. The TOP+ booster intervention for toddlers was evaluated in a randomized pilot study and showed high parental compliance and satisfaction. Medium-to-large effect sizes were found in favor of the intervention group on child developmental and socio-emotional outcomes, as well as parental outcomes.
Third, this thesis explored parents’ informational needs following hospital discharge and evaluated existing mobile health applications for parents of pre-term infants. These findings informed the development and evaluation of the e-TOP app. The app was developed using a participatory design approach, involving parents (including those with limited health literacy) and healthcare professionals. Usability was evaluated using questionnaires, user analytics, thinking-aloud sessions, interviews, and in-app feedback. Declining engagement over time highlighted opportunities to further improve personalization, content, and navigation. Overall, the findings demonstrated good usability and positive user experiences.