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.
Karin Källén KG (2015) Birth defects 2013. The National Board of Health and Welfare, Stockholm
Tracy ET, Mears SE, Smith PB, Danko ME, Diesen DL, Fisher KA, Hoehner JC, Goldberg RN, Cotten CM, Rice HE (2010) Protocolized approach to the management of congenital diaphragmatic hernia: benefits of reducing variability in care. J Pediatr Surg 45(6):1343–1348. doi: 10.1016/j.jpedsurg.2010.02.104CrossRefPubMedPubMedCentral
van den Hout L, Schaible T, Cohen-Overbeek TE, Hop W, Siemer J, van de Ven K, Wessel L, Tibboel D, Reiss I (2011) Actual outcome in infants with congenital diaphragmatic hernia: the role of a standardized postnatal treatment protocol. Fetal Diagn Ther 29(1):55–63. doi: 10.1159/000322694CrossRefPubMed
Reiss I, Schaible T, van den Hout L, Capolupo I, Allegaert K, van Heijst A, Gorett Silva M, Greenough A, Tibboel D (2010) Standardized postnatal management of infants with congenital diaphragmatic hernia in Europe: the CDH EURO consortium consensus. Neonatology 98(4):354–364. doi: 10.1159/000320622CrossRefPubMed
Burgos CM, Ost E, Wannberg M, Frenckner B (2012) High survival rate among newborns with congenital diaphragmatic hernia. 20 year follow up of patients treated in Stockholm. Lakartidningen 109(6):287–291 PubMed
Jancelewicz T, Vu LT, Keller RL, Bratton B, Lee H, Farmer D, Harrison M, Miniati D, Mackenzie T, Hirose S, Nobuhara K (2010) Long-term surgical outcomes in congenital diaphragmatic hernia: observations from a single institution. J Pediatr Surg 45(1):155–160. doi: 10.1016/j.jpedsurg.2009.10.028(discussion 160)CrossRefPubMed
Hagenfeldt KAV, Axelsson O, Blennow M, Bojö F, Bygdeman M, Crang-Svalenius E, Jörgensen C, Lagercrantz H, Marké L-Å, Marsál K, Salvesen K, Valentin L, Wistrand-Lavotha A (1998) Rutinmässig ultraljudsundersökning under graviditet. SBU, Stockholm
Kaasen A, Helbig A, Malt UF, Naes T, Skari H, Haugen G (2010) Acute maternal social dysfunction, health perception and psychological distress after ultrasonographic detection of a fetal structural anomaly. BJOG Int J Obstet Gynaecol 117(9):1127–1138. doi: 10.1111/j.1471-0528.2010.02622.xCrossRef
Skari H, Malt UF, Bjornland K, Egeland T, Haugen G, Skreden M, Dalholt Bjork M, Bjornstad Ostensen A, Emblem R (2006) Prenatal diagnosis of congenital malformations and parental psychological distress–a prospective longitudinal cohort study. Prenat Diagn 26(11):1001–1009. doi: 10.1002/pd.1542CrossRefPubMed
Abidin RR (1990) Parenting Stress Index (PSI)-manual. Psychological Assessment Resources Inc, Odessa
Ostberg M (1998) Parental stress, psychosocial problems and responsiveness in help-seeking parents with small (2–45 months old) children. Acta Paediatr (Oslo, Norway: 1992) 87(1):69–76 CrossRef
Kaasen A, Helbig A, Malt UF, Naes T, Skari H, Haugen GN (2013) Paternal psychological response after ultrasonographic detection of structural fetal anomalies with a comparison to maternal response: a cohort study. BMC Pregnancy Childbirth 13:147. doi: 10.1186/1471-2393-13-147CrossRefPubMedPubMedCentral
Burgos CM, Modee A, Ost E, Frenckner B (2016) Addressing the causes of late mortality in infants with congenital diaphragmatic hernia. J Pediatr Surg. doi: 10.1016/j.jpedsurg.2016.08.028
Gottvall K, Waldenstrom U (2002) Does a traumatic birth experience have an impact on future reproduction? BJOG Int J Obstet Gynaecol 109(3):254–260 CrossRef
Skari H, Skreden M, Malt UF, Dalholt M, Ostensen AB, Egeland T, Emblem R (2002) Comparative levels of psychological distress, stress symptoms, depression and anxiety after childbirth—a prospective population-based study of mothers and fathers. BJOG Int J Obstet Gynaecol 109(10):1154–1163
- Parenting stress among parents of children with congenital diaphragmatic hernia
Carmen Mesas Burgos
- Springer Berlin Heidelberg