Öst Elin, Nisell Margret, Frenckner Björn, Mesas Burgos Carmen, Öjmyr-Joelsson Maria
Karolinska Institutet, Department of Women's and Children's Health, 171 76, Stockholm, Sweden.
Pediatric Surgery Unit, Karolinska University Hospital, Astrid Lindgren Children's Hospital, 171 76, Stockholm, Sweden.
Pediatr Surg Int. 2017 Jul;33(7):761-769. doi: 10.1007/s00383-017-4093-4. Epub 2017 May 19.
The aim of this study was to examine parental stress among parents of children with congenital diaphragmatic hernia (CDH).
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.
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.
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.
本研究旨在调查先天性膈疝（CDH）患儿父母的压力状况。
2005年至2009年间，共有51例先天性膈疝患儿在阿斯特丽德·林德格伦儿童医院接受治疗。出院时的存活率为86%，长期存活率为80%。本研究纳入了长期存活患儿（41例）的每位父母，34位父母（83%）同意参与。参与者接受了瑞典为人父母压力问卷（SPSQ）。问卷还补充了病例记录中的数据。
接受体外膜肺氧合（ECMO）支持或住院时间较长的先天性膈疝患儿的父母，总体父母压力显著更高。母亲的总体父母压力得分高于父亲。产前诊断为先天性膈疝或父母教育水平较低，在某些因素中导致父母压力显著更高。
先天性膈疝患儿父母的压力似乎随着患儿畸形严重程度的增加而增加。母亲的父母压力得分往往高于父亲。
