Parenting stress among parents of children with congenital diaphragmatic hernia

Elin Öst,Margret Nisell,Carmen Mesas Burgos,Maria Öjmyr-Joelsson,Björn Frenckner

doi:10.1007/s00383-017-4093-4

Abstract

PurposeThe aim of this study was to examine parental stress among parents of children with congenital diaphragmatic hernia (CDH).MethodsBetween 2005 and 2009, a total of 51 children with CDH were treated at Astrid Lindgren Children’s Hospital. The survival rate at discharge was 86% and long-term survival rate 80%. One parent each of the long-term survivors (41 children) was included in the present study, and 34 parents (83%) agreed to participate. Participants received the Swedish Parenthood Stress Questionnaire (SPSQ). The questionnaire was supplemented by data from case records.ResultsParents of children with CDH, who had been supported by ECMO or had a long hospital stay, showed significantly higher overall parental stress. Mothers scored an overall higher parental stress compared with fathers. A prenatal diagnosis of CDH or lower parental educational level resulted in significantly higher parental stress in some of the factors.ConclusionsParental stress in parents of children with CDH seems to increase with the severity of the child’s malformation. Mothers tend to score higher parental stress than fathers.

Highlights

Congenital diaphragmatic hernia (CDH) is a life-threatening anomaly which occurs in 2–3:10,000 pregnancies [1]
Parents of children with congenital diaphragmatic hernia (CDH), who had been supported by extracorporeal membrane oxygenation (ECMO) or had a long hospital stay, showed significantly higher overall parental stress
A prenatal diagnosis of CDH or lower parental educational level resulted in significantly higher parental stress in some of the factors

Summary

Introduction

Congenital diaphragmatic hernia (CDH) is a life-threatening anomaly which occurs in 2–3:10,000 pregnancies [1]. Due to a defect in the diaphragm, abdominal viscera herniate into the thoracic cavity and babies are born with small and hypoplastic lungs [2]. Management strategies, such as preoperative stabilization, gentle ventilation and access to extracorporeal membrane oxygenation (ECMO), have lead to an increased survival rate [3,4,5,6,7]; in our institution, 85% [8]. The prevalence of birth defects among Swedish children is 3%, and approximately 0.5% of all pregnancies lead to a termination due to the diagnosis of a fetal anomaly [1]. A healthy transition to parenthood is influenced by fetal and future child health, and how information about a fetal anomaly during counseling is presented has a great importance in the relationship between the parent and the baby [19]

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