Identifying knowledge gaps in managing premature children: A parental perspective study.

Introduction: The study, conducted as part of the PreNat HUB ERASMUS + program, aimed to identify the main knowledge gaps of parents due to the lack of information provided by professionals involved in the management of premature children. It focused on the experiences of parents in dealing with health, educational, and social aspects of prematurity from birth to adulthood. Methods: A comprehensive questionnaire was developed and distributed to 187 mothers from five European countries. This survey aimed to assess the information and support provided by various professional groups, including healthcare, education, and social services, and to identify the main areas where parents felt they lacked necessary knowledge. Results: The study identified significant knowledge gaps among parents of premature children, covering health, developmental issues, and educational challenges. Only 39.6% were informed about developmental disorders like attention deficit disorders. Notably, 47.6% of children faced unexpected learning problems, often uncommunicated to parents. Awareness about support systems was limited; 22.5% knew of psychological support groups, and 11.2% about medical groups for parents. In education, just 9.1% believed school nurses understood their child's needs, and 13.9% felt schools were aware of these needs. Furthermore, only 19.8% were informed about state benefits, showing a critical information gap. Conclusion: There is a critical need for better communication and information sharing between professionals and parents of premature children. Addressing knowledge gaps is vital for managing and supporting these children's development and well-being. An integrated approach involving health, education, and social services is essential to effectively support these families.