Emergency service perspective of families with children who have neurodevelopmental diseases

Introduction: It is known that children with neurodevelopmental diseases have frequent traumas like falling and apply to emergency department which significantly affects patient and family. Our aim is to examine the families' view and the problems encountered in emergency services by examining their answers to questionnaire. Method: This study was designed retrospectively. Patients registered in Department of Autism, Mental Special Needs and Rare Diseases as families with children who have neurodevelopmental diseases included in the study. 324 families’ survey with 12 open-ended questions evaluated in terms of distribution and frequencies with descriptive statistical methods. Results: By analyzing the data obtained the findings of the research were gathered under 12 main themes and 80 sub-themes. 313 (89.9%) were diagnosed with Down Syndrome, 9 (2.5%) with Angelman Syndrome, 7 (2.02%) with intellectual disability, and 5 (1.4%) with Autism. 34.2% of the children were 0-3 years old, 28.7% were 3-6 years old, 20.9% were 6-10 years old. Emergency services were used in "all cases where urgent intervention is required" (70%), and in cases where “an outpatient appointment couldn’t made" (10.8%) Conclusion: It would be beneficial to examine children with neurodevelopmental diseases in an understanding and patient manner, using a plain and understandable language, in a quiet environment in emergency room. To solve these patient’s problems, awareness training of healthcare professionals, having separate examination and observation room, ensuring accessibility and arranging the room with necessary medical supplies and equipment should be made.