Experience-based co-design to refine a remote parent-mediated intervention program for preterm infants after NICU discharge: a qualitative study

BACKGROUND: Preterm infants have elevated risks of motor, cognitive, and socioemotional difficulties, yet families often face substantial barriers to accessing rehabilitation after NICU discharge. Coaching-based parent-mediated intervention program supported through remote guidance may improve continuity and accessibility of developmental care, but few programs are tailored to the unique needs of preterm infants or developed with stakeholder input. This study used experience-based co-design (EBCD) to refine an existing remote parent-mediated intervention program for preterm infants after NICU discharge. METHODS: A modified five-stage EBCD framework was employed. Nine participants were recruited through purposive sampling: five mothers of preterm infants who had experienced remote rehabilitation (individual in-depth interviews) and four multidisciplinary healthcare professionals-one pediatric physiatrist, one NICU nurse, and two pediatric physical therapists (focus group interview). Data from Stages 1-3 (observation, interviews) were analyzed using inductive qualitative content analysis. Findings were synthesized into a trigger film (Stage 4) and presented at a co-design workshop involving 13 stakeholders (Stage 5) to collaboratively finalize program components. RESULTS: Three themes emerged from stakeholder experiences: (1) navigating the threshold-high parental motivation and accessibility advantages offset by intensive session preparation demands; (2) engaging in the interface-professional feedback enhanced parental confidence, but remote delivery created psychological pressure and a tactile disconnect; and (3) beyond the screen-static educational materials were insufficient for independent home practice and documentation burden hindered adherence. Through co-design, stakeholders prioritized a hybrid model comprising 15-minute synchronous video sessions, pre-discharge in-person training, asynchronous video resources, video-based formative assessment, and a messaging-based Q&A system. Program scope was expanded beyond motor rehabilitation to encompass oral feeding intervention, sleep hygiene, parent-infant interaction, and psychosocial outcomes. CONCLUSION: Through EBCD, we collaboratively refined an existing remote parent-mediated intervention program addressing key stakeholder priorities including hybrid delivery, professional feedback, and psychosocial support. The intervention balances ideal and pragmatic solutions and is prepared for feasibility testing in a future randomized controlled trial.