PURPOSE: The aim of this study was to examine parental stress among parents of children with congenital diaphragmatic hernia (CDH).

METHODS: Between 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.

RESULTS: Parents 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.

CONCLUSIONS: Parental 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.