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Parents' informational needs at the birth of a baby with a surgically correctable anomaly
1Neonatal Surgery Unit, Department of Neonatology, Pediatric Hospital Bambino Gesù of Rome, P.zza S. Onofrio, 4, 00165 Rome, Italy.
Insights
Parents of newborns with surgical anomalies need clear information about the condition and prognosis before surgery. After surgery, they seek details on recovery and quality of life, preferring written educational materials from surgeons.
Area of Science:
- Pediatric Surgery
- Neonatal Care
- Parental Education
Background:
- Physician-parent communication is crucial for families of critically ill children.
- Understanding parental informational needs aids in developing effective communication strategies.
Purpose of the Study:
- To assess the specific informational needs of parents whose newborns require surgery for congenital anomalies.
- To compare these needs before and after the surgical procedure.
Main Methods:
- A questionnaire survey was administered to 30 couples with newborns undergoing major surgery between 1997 and 2000.
- Data collected focused on parental awareness of anomalies and information requirements.
Main Results:
- Nearly all parents were unaware of the anomaly before diagnosis (100% mothers, 97% fathers).
- Pre-operatively, parents prioritized anomaly description and survival prognosis.
- Post-operatively, information on recovery steps and long-term quality of life became paramount.
- 100% of parents desired written educational materials from surgeons.
Conclusions:
- Surgeons must proactively address distinct parental informational needs during the perioperative period.
- Tailoring communication to parental expectations, especially regarding recovery and quality of life, is essential.
- Providing written educational materials can significantly enhance physician-parent interaction and support.
Abstract:
Previous studies have assessed informational needs of parents of sick fetuses, neonates and children to identify favourable patterns of physician-parent interaction. The aim of this paper was to assess parents' informational needs before and after the operation when the one affected by a surgically correctable anomaly is a newborn. In the period ranging from 1997 to 2000 all couples with newborns undergoing major surgical procedures at birth, at the Newborn Surgery Unit of the Hospital Bambino Gesù, were surveyed by means of a questionnaire. Thirty couples form the object of the study. The two genders did not show significant difference in any of the considered items. All 30/30 mothers (M; 100%) and 29/30 fathers (F; 97%) had never heard about the anomaly before the diagnosis was established in their baby. All parents (100%) stated that it would be better if the surgeon informed them with written educational material. Principal informational needs before operation regard: the description of the anomaly (M = 10; F = 11) and the prognosis in terms of survival chances of the baby (M = 17; F = 15); after surgery the cause of the anomaly (M = 5; F = 3); the steps of the recovery process (M = 10; F = 12) as well as the quality of their baby's life (M = 9; F = 9). In the immediate perioperative period the surgeon should well address parents' informational needs, which may significantly differ from his communication plan.
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