The development of an online information platform to support parents of very and moderate preterm born infants

BACKGROUND AND AIMS: Parents of preterm born infants experience challenges when transitioning home, including the struggle to feel confident in their capacity to parent. Attuned information provision is a prerequisite for self-efficacy and empowerment and has been linked to positive parenting outcomes. The internet is an important source to obtain information regarding topics like prematurity, development and specific health problems. However, parents experience problems to find and understand appropriate health information with respect to their preterm born infant. Especially parents with low health literacy skills. Therefore our aim is to develop an inclusive digital information platform for and in cocreation with parents of premature infants and paediatric physical therapists (eTOP). METHODS: To generate ideas and content for eToP module, we first conducted interviews with parents (n=10) and performed three online co-creation sessions with parents (n=14) and paediatric physical therapists (N=8). The data were analyzed through an inductive thematic approach. The analyses resulted in several main topics. With respect to these topics, experts were consulted and asked to generate text-based information content. The information content was then reviewed by the research team and included in the first prototype of the eTOP module. RESULTS: 11 themes were identified to be important, including general health issues, motor development, regulation, feeding, sleeping, prematurity, general development, long term outcomes, parenthood, going back to work and professionals. CONCLUSIONS: Based on the topics we developed the first version of the eTOP module. In the next two months we will develop and test a second version which will be presented at the EAPS congress.