Telephone helpline for parents of children with congenital anomalies.

Aim: This paper is a report of a study to evaluate how often and for what reason parents of children born with severe anatomical congenital anomalies use a 24-hour telephone helpline, and to identify differences between callers and non-callers.

Background: Children born with severe congenital anomalies often remain dependent on medical care and technology after discharge. Adequate medical consultation in the home situation may lower parental burden.

Method: Observational study of telephone contacts from 2000 to 2006 with parents of congenital anomaly patients discharged home after neonatal intensive care admission. Frequency of telephone calls was categorized per type of anomaly. Resulting interventions in terms of consultation and hospital admission were recorded. Finally, costs of personnel needed to provide 24-hour telephone helpline availability were calculated.

Findings: A total of 670 calls occurred outside office hours, from 34.4% of all parents; 23.7% of these calls concerned feeding problems. Parents of children with oesophageal atresia, urogenital malformation and congenital diaphragmatic hernia called most frequently (44.3-50.6%). Non-callers were more often first-time parents, divorced/separated or immigrants. Nurses handled 24.5% of calls by themselves and 20.2% of calls led to emergency room consultations resulting in 4.9% admissions. First contact took place at median age 3 months, last contact at median age 8 months. Total personnel costs amounted to euro27,191 per year.

Conclusion: A 24-hour telephone helpline provides easy access to medical and supportive care for parents of children with congenital anomalies at relatively low cost. Nurses can effectively run this telephone helpline with paediatrician back-up.