Parenting stress among parents of children with congenital diaphragmatic hernia

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

Abstract

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.

Keywords: Congenital diaphragmatic hernia; Extracorporeal membrane oxygenation; Long-term follow-up; Parental stress; Prenatal diagnosis.

References

    1. Karin Källén KG. Birth defects 2013. Stockholm: The National Board of Health and Welfare; 2015.
    1. Bargy F, Beaudoin S, Barbet P. Fetal lung growth in congenital diaphragmatic hernia. Fetal Diagn Ther. 2006;21(1):39–44. doi: 10.1159/000089046.
    1. Frenckner B, Ehren H, Granholm T, Linden V, Palmer K. Improved results in patients who have congenital diaphragmatic hernia using preoperative stabilization, extracorporeal membrane oxygenation, and delayed surgery. J Pediatr Surg. 1997;32(8):1185–1189. doi: 10.1016/S0022-3468(97)90679-5.
    1. Antonoff MB, Hustead VA, Groth SS, Schmeling DJ. Protocolized management of infants with congenital diaphragmatic hernia: effect on survival. J Pediatr Surg. 2011;46(1):39–46. doi: 10.1016/j.jpedsurg.2010.09.060.
    1. Tracy ET, Mears SE, Smith PB, Danko ME, Diesen DL, Fisher KA, Hoehner JC, Goldberg RN, Cotten CM, Rice HE. Protocolized approach to the management of congenital diaphragmatic hernia: benefits of reducing variability in care. J Pediatr Surg. 2010;45(6):1343–1348. doi: 10.1016/j.jpedsurg.2010.02.104.
    1. van den Hout L, Schaible T, Cohen-Overbeek TE, Hop W, Siemer J, van de Ven K, Wessel L, Tibboel D, Reiss I. Actual outcome in infants with congenital diaphragmatic hernia: the role of a standardized postnatal treatment protocol. Fetal Diagn Ther. 2011;29(1):55–63. doi: 10.1159/000322694.
    1. Reiss I, Schaible T, van den Hout L, Capolupo I, Allegaert K, van Heijst A, Gorett Silva M, Greenough A, Tibboel D. Standardized postnatal management of infants with congenital diaphragmatic hernia in Europe: the CDH EURO consortium consensus. Neonatology. 2010;98(4):354–364. doi: 10.1159/000320622.
    1. Burgos CM, Ost E, Wannberg M, Frenckner B. High survival rate among newborns with congenital diaphragmatic hernia. 20 year follow up of patients treated in Stockholm. Lakartidningen. 2012;109(6):287–291.
    1. Danzer E, Kim SS. Neurodevelopmental outcome in congenital diaphragmatic hernia: evaluation, predictors and outcome. World J Clin Pediatr. 2014;3(3):30–36. doi: 10.5409/wjcp.v3.i3.30.
    1. Lally KP, Engle W. Postdischarge follow-up of infants with congenital diaphragmatic hernia. Pediatrics. 2008;121(3):627–632. doi: 10.1542/peds.2007-3282.
    1. Davis PJ, Firmin RK, Manktelow B, Goldman AP, Davis CF, Smith JH, Cassidy JV, Shekerdemian LS. Long-term outcome following extracorporeal membrane oxygenation for congenital diaphragmatic hernia: the UK experience. J Pediatr. 2004;144(3):309–315. doi: 10.1016/j.jpeds.2003.11.031.
    1. van den Hout L, Reiss I, Felix JF, Hop WC, Lally PA, Lally KP, Tibboel D, Congenital Diaphragmatic Hernia Study G Risk factors for chronic lung disease and mortality in newborns with congenital diaphragmatic hernia. Neonatology. 2010;98(4):370–380. doi: 10.1159/000316974.
    1. Peetsold MG, Kneepkens CM, Heij HA, Ij H, Tibboel D, Gemke RJ. Congenital diaphragmatic hernia: long-term risk of gastroesophageal reflux disease. J Pediatr Gastroenterol Nutr. 2010;51(4):448–453. doi: 10.1097/MPG.0b013e3181d1b149.
    1. Peetsold MG, Heij HA, Nagelkerke AF, Ijsselstijn H, Tibboel D, Quanjer PH, Gemke RJ. Pulmonary function and exercise capacity in survivors of congenital diaphragmatic hernia. Eur Respir J. 2009;34(5):1140–1147. doi: 10.1183/09031936.00181408.
    1. Frisk V, Jakobson LS, Unger S, Trachsel D, O’Brien K. Long-term neurodevelopmental outcomes of congenital diaphragmatic hernia survivors not treated with extracorporeal membrane oxygenation. J Pediatr Surg. 2011;46(7):1309–1318. doi: 10.1016/j.jpedsurg.2010.12.023.
    1. Jancelewicz T, Vu LT, Keller RL, Bratton B, Lee H, Farmer D, Harrison M, Miniati D, Mackenzie T, Hirose S, Nobuhara K. Long-term surgical outcomes in congenital diaphragmatic hernia: observations from a single institution. J Pediatr Surg. 2010;45(1):155–160. doi: 10.1016/j.jpedsurg.2009.10.028.
    1. 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. Rutinmässig ultraljudsundersökning under graviditet. Stockholm: SBU; 1998.
    1. Kaasen A, Helbig A, Malt UF, Naes T, Skari H, Haugen G. Acute maternal social dysfunction, health perception and psychological distress after ultrasonographic detection of a fetal structural anomaly. BJOG Int J Obstet Gynaecol. 2010;117(9):1127–1138. doi: 10.1111/j.1471-0528.2010.02622.x.
    1. McKechnie AC, Pridham K, Tluczek A. Preparing heart and mind for becoming a parent following a diagnosis of fetal anomaly. Qual Health Res. 2015;25(9):1182–1198. doi: 10.1177/1049732314553852.
    1. Mesas Burgos C, Hammarqvist-Vejde J, Frenckner B, Conner P. Differences in outcomes in prenatally diagnosed congenital diaphragmatic hernia compared to postnatal detection: a single-center experience. Fetal Diagn Ther. 2015
    1. Skari H, Malt UF, Bjornland K, Egeland T, Haugen G, Skreden M, Dalholt Bjork M, Bjornstad Ostensen A, Emblem R. Prenatal diagnosis of congenital malformations and parental psychological distress–a prospective longitudinal cohort study. Prenat Diagn. 2006;26(11):1001–1009. doi: 10.1002/pd.1542.
    1. Schytt E, Hildingsson I. Physical and emotional self-rated health among Swedish women and men during pregnancy and the first year of parenthood. Sexual Reprod Healthc. 2011;2(2):57–64. doi: 10.1016/j.srhc.2010.12.003.
    1. Deater-Deckard K. Parenting stress and child adjustment: some old hypotheses and new questions. Clin Psychol Sci Pract. 1998;5:314–332. doi: 10.1111/j.1468-2850.1998.tb00152.x.
    1. Östberg M, Hagekull B, Hagelin E. Stability and prediction of parenting stress. Infant Child Dev. 2007;16:207–223. doi: 10.1002/icd.516.
    1. Pripp AH, Skreden M, Skari H, Malt U, Emblem R. Underlying correlation structures of parental stress, general health and anxiety. Scand J Psychol. 2010;51(6):473–479. doi: 10.1111/j.1467-9450.2010.00841.x.
    1. Skreden M, Skari H, Malt UF, Pripp AH, Bjork MD, Faugli A, Emblem R. Parenting stress and emotional wellbeing in mothers and fathers of preschool children. Scand J Public Health. 2012;40(7):596–604. doi: 10.1177/1403494812460347.
    1. Abidin RR. Parenting Stress Index (PSI)-manual. Odessa: Psychological Assessment Resources Inc; 1990.
    1. Ostberg M, Hagekull B, Wettergren S. A measure of parental stress in mothers with small children: dimensionality, stability and validity. Scand J Psychol. 1997;38(3):199–208. doi: 10.1111/1467-9450.00028.
    1. Ostberg M. Parental stress, psychosocial problems and responsiveness in help-seeking parents with small (2–45 months old) children. Acta Paediatr (Oslo, Norway: 1992) 1998;87(1):69–76. doi: 10.1111/j.1651-2227.1998.tb01389.x.
    1. Ostberg M, Hagekull B. Parenting stress and external stressors as predictors of maternal ratings of child adjustment. Scand J Psychol. 2013;54(3):213–221. doi: 10.1111/sjop.12045.
    1. Kaasen A, Helbig A, Malt UF, Naes T, Skari H, Haugen GN. Paternal psychological response after ultrasonographic detection of structural fetal anomalies with a comparison to maternal response: a cohort study. BMC Pregnancy Childbirth. 2013;13:147. doi: 10.1186/1471-2393-13-147.
    1. Aite L, Trucchi A, Nahom A, Zaccara A, La Sala E, Bagolan P. Antenatal diagnosis of surgically correctable anomalies: effects of repeated consultations on parental anxiety. J Perinatol. 2003;23(8):652–654. doi: 10.1038/sj.jp.7210992.
    1. Aite L, Trucchi A, Nahom A, Casaccia G, Zaccara A, Giorlandino C, Bagolan P. Antenatal diagnosis of diaphragmatic hernia: parents’ emotional and cognitive reactions. J Pediatr surg. 2004;39(2):174–178. doi: 10.1016/j.jpedsurg.2003.10.010.
    1. Carlsson T, Bergman G, Melander Marttala U, Wadensten B, Mattsson E. Information following a diagnosis of congenital heart defect: experiences among parents to prenatally diagnosed children. PLoS One. 2015;10(2):e0117995. doi: 10.1371/journal.pone.0117995.
    1. Fonseca A, Nazare B, Canavarro MC. Medical information concerning an infant’s congenital anomaly: successful communication to support parental adjustment and transition. Disabil Health J. 2016;9(1):150–156. doi: 10.1016/j.dhjo.2015.08.005.
    1. Burgos CM, Modee A, Ost E, Frenckner B. Addressing the causes of late mortality in infants with congenital diaphragmatic hernia. J Pediatr Surg. 2016
    1. Ost E, Joelsson MO, Burgos CM, Frenckner B. Self-assessed physical health among children with congenital diaphragmatic hernia. Pediatr Surg Int. 2016
    1. Lewis AR, Wray J, O’Callaghan M, Wroe AL. Parental symptoms of posttraumatic stress after pediatric extracorporeal membrane oxygenation. Pediatr Crit Care Med. 2014;15(2):e80–e88. doi: 10.1097/PCC.0000000000000036.
    1. Widarsson M, Engstrom G, Berglund A, Tyden T, Lundberg P. Parental stress and dyadic consensus in early parenthood among mothers and fathers in Sweden. Scand J Caring Sci. 2014;28(4):689–699. doi: 10.1111/scs.12096.
    1. Fonseca A, Nazare B, Canavarro MC. The role of satisfaction with social support in perceived burden and stress of parents of 6-month-old infants with a congenital anomaly: actor and partner effects. J Child Health Care. 2014;18(2):178–191. doi: 10.1177/1367493513485478.
    1. Gottvall K, Waldenstrom U. Does a traumatic birth experience have an impact on future reproduction? BJOG Int J Obstet Gynaecol. 2002;109(3):254–260. doi: 10.1111/j.1471-0528.2002.01200.x.
    1. Skari H, Skreden M, Malt UF, Dalholt M, Ostensen AB, Egeland T, Emblem R. 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. 2002;109(10):1154–1163.

Source: PubMed

赞助者和合作者

医疗条件

药物干预

3
订阅