Generic Portal

TY - JOUR

T1 - Distress and post-traumatic stress in parents of patients with congenital gastrointestinal malformations

T2 - a cross-sectional cohort study

AU - Roorda, D.

AU - van der Steeg, A. F. W.

AU - van Dijk, M.

AU - Derikx, J. P. M.

AU - Gorter, R. R.

AU - Emma Children’s Hospital Amsterdam UMC Follow-Me Program Consortium

AU - Rotteveel, J.

AU - van Goudoever, J. B.

AU - van Heurn, L. W. E.

AU - Oosterlaan, J.

AU - Haverman, L.

N1 - Funding Information: The authors like to acknowledge Marijke Voskeuil, nurse specialist and Jan-Pieter Marchal, Cornelieke Aarnoudse-Moens, and Perrine Limperg, psychologists within the Follow Me program, for conducting psychological screening and providing psychological care to the parents of patients with congenital malformations within our multidisciplinary follow-up program Follow Me. Publisher Copyright: © 2022, The Author(s).

PY - 2022/12

Y1 - 2022/12

N2 - Background: Congenital gastrointestinal malformation (CGIM) require neonatal surgical treatment and may lead to disease-specific sequelae, which have a potential psychological impact on parents. The aim of this study is to assess distress and symptoms of post-traumatic stress disorder (PTSD) in parents of patients with CGIM. In this cross-sectional study, seventy-nine parents (47 mothers and 32 fathers) of 53 patients with CGIM completed the Distress Thermometer for Parents (DT-P) and the Self Rating Scale for Posttraumatic Stress Disorders (SRS-PTSD) as part of the multidisciplinary follow-up of their children (aged 5–35 months). Group differences were tested between parents and representative Dutch reference groups with regard to rates of (clinical) distress and PTSD, and severity of overall distress and PTSD, for mothers and fathers separately. Mixed model regression models were used to study factors associated with the risk of (clinical) distress, PTSD and with severity of symptoms of PTSD (intrusion, avoidance and hyperarousal). Results: Prevalence of clinical distress was comparable to reference groups for mothers (46%) and fathers (34%). There was no difference in severity of overall distress between both mothers as well as fathers and reference groups. Prevalence of PTSD was significantly higher in mothers (23%) compared to the reference group (5.3%) (OR = 5.51, p < 0.001), not in fathers (6.3% vs 2.2.%). Symptoms of intrusion were commonly reported by all the parents (75%). Longer total length of child’s hospital stay was associated with more severe symptoms of intrusion, avoidance and hyperarousal. Child’s length of follow-up was negatively associated with severity of intrusion. Conclusions: Having a child with CGIM has a huge impact on parents, demonstrated by a higher prevalence of PTSD in mothers, but not fathers, compared to parents in the general population. Monitoring of symptoms of PTSD of parents in follow-up is necessary.

AB - Background: Congenital gastrointestinal malformation (CGIM) require neonatal surgical treatment and may lead to disease-specific sequelae, which have a potential psychological impact on parents. The aim of this study is to assess distress and symptoms of post-traumatic stress disorder (PTSD) in parents of patients with CGIM. In this cross-sectional study, seventy-nine parents (47 mothers and 32 fathers) of 53 patients with CGIM completed the Distress Thermometer for Parents (DT-P) and the Self Rating Scale for Posttraumatic Stress Disorders (SRS-PTSD) as part of the multidisciplinary follow-up of their children (aged 5–35 months). Group differences were tested between parents and representative Dutch reference groups with regard to rates of (clinical) distress and PTSD, and severity of overall distress and PTSD, for mothers and fathers separately. Mixed model regression models were used to study factors associated with the risk of (clinical) distress, PTSD and with severity of symptoms of PTSD (intrusion, avoidance and hyperarousal). Results: Prevalence of clinical distress was comparable to reference groups for mothers (46%) and fathers (34%). There was no difference in severity of overall distress between both mothers as well as fathers and reference groups. Prevalence of PTSD was significantly higher in mothers (23%) compared to the reference group (5.3%) (OR = 5.51, p < 0.001), not in fathers (6.3% vs 2.2.%). Symptoms of intrusion were commonly reported by all the parents (75%). Longer total length of child’s hospital stay was associated with more severe symptoms of intrusion, avoidance and hyperarousal. Child’s length of follow-up was negatively associated with severity of intrusion. Conclusions: Having a child with CGIM has a huge impact on parents, demonstrated by a higher prevalence of PTSD in mothers, but not fathers, compared to parents in the general population. Monitoring of symptoms of PTSD of parents in follow-up is necessary.

KW - Congenital malformations

KW - Distress

KW - Parental outcome

KW - Post-traumatic stress disorder

KW - Surgery

UR - http://www.scopus.com/inward/record.url?scp=85137702915&partnerID=8YFLogxK

U2 - 10.1186/s13023-022-02502-7

DO - 10.1186/s13023-022-02502-7

M3 - Article

C2 - 36089585

VL - 17

SP - 353

JO - Orphanet journal of rare diseases

JF - Orphanet journal of rare diseases

SN - 1750-1172

IS - 1

M1 - 353

ER -