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Identifying knowledge gaps in managing premature children: A parental perspective study
Ourania S Kotsiou1, Konstantinos I Gourgoulianis2, Livia N Bonnard3
1Laboratory of Human Pathophysiology, Department of Nursing, University of Thessaly School of Health Sciences, Larissa, Greece.
Insights
Parents of premature children face significant knowledge gaps regarding health, education, and social support. Improved communication from professionals is crucial for the well-being and development of children born prematurely.
Area of Science:
- Pediatrics
- Developmental Psychology
- Public Health
Background:
- Premature birth presents lifelong challenges for children and families.
- Parents often lack adequate information on managing health, educational, and social needs.
- Existing support systems may not effectively reach families of premature children.
Purpose of the Study:
- To identify knowledge gaps experienced by parents of premature children.
- To assess information and support provided by healthcare, education, and social services.
- To understand parental experiences from birth through adulthood.
Main Methods:
- A questionnaire was developed and administered to 187 mothers across five European countries.
- The survey assessed perceived information deficits and support availability.
- Data collection focused on health, developmental, and educational aspects.
Main Results:
- Significant parental knowledge gaps were identified in health (e.g., developmental disorders awareness at 39.6%) and education (47.6% experienced uncommunicated learning problems).
- Awareness of support systems was low (22.5% knew of psychological support groups, 11.2% medical groups).
- Parents reported poor understanding of their child's needs by educational institutions (9.1% school nurses, 13.9% schools) and limited knowledge of state benefits (19.8%).
Conclusions:
- A critical need exists for enhanced communication and information dissemination from professionals to parents of premature children.
- Addressing these knowledge deficits is essential for optimizing the development and well-being of premature children.
- An integrated approach involving health, education, and social services is vital for comprehensive family support.
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.
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