Effect of instructional guidelines on the parents’ care of neonates with neural tube defects

Abstract

Neural tube defects (NTDs) represent the most common congenital anomalies of the central nervous system in pediatric populations, posing significant challenges for both neonatal care and parental wellbeing. This study aimed to evaluate the effectiveness of instructional guidelines on improving parental care practices for neonates with NTDs. A quasi-experimental design was employed at the neonatal intensive care unit and Neurological Department of the Children's Hospital affiliated with Ain Shams University, and at Helwan General Hospital. A convenience sample of 40 parents of neonates diagnosed with NTDs participated. Data were collected over a complete 12 years using three tools: (I) a structured interview questionnaire assessing demographic characteristics and parental knowledge regarding NTD care; (II) an observational checklist evaluating parental caregiving practices; and (III) the Parental Stress Index to measure stress levels. Post-intervention assessments revealed significant improvements in parental knowledge and caregiving practices, accompanied by a reduction in stress levels. A statistically significant association was found between the gender of the parent and their knowledge, practices, and stress levels related to NTD care. The instructional guidelines had a positive impact on parental knowledge, caregiving practices, and stress management in caring for neonates with NTDs, thus supporting the study hypothesis. The integration of structured instructional guidelines into neonatal intensive care units, pediatric neurology departments, and surgical wards is recommended to enhance parental competencies, reduce stress, and ultimately improve health outcomes for neonates with NTDs.