What are the experiences of pregnant women with a CHD diagnosis?
Research type
Research Study
Full title
What are the experiences of pregnant women with a fetal diagnosis of congenital heart disease who participate or do not participate in parent support groups?
IRAS ID
218421
Contact name
Suzanne Lee
Contact email
Sponsor organisation
City University London
Duration of Study in the UK
0 years, 8 months, 26 days
Research summary
Congenital heart disease (CHD) is the most common congenital defect, affecting nine in every thousand live births in the UK. Antenatal detection rates are improving, meaning a better outcome for the baby after birth. A training programme for sonographers was completed in December 2016, which aims to raise the detection rate of CHD in pregnancy from just 47% in the UK. However, this vital antenatal detection to improve neonatal survival means more expectant parents will experience the stress of discovering their baby has a potentially life threatening heart condition during pregnancy. Research has revealed that expectant mothers experience higher levels of anxiety during pregnancy than expectant fathers. High levels of adrenaline and cortisol related to anxiety in the pregnant woman has raised concerns over placental function. When high cortisol levels are measured in the mother, high cortisol levels are also measured in the amniotic fluid surrounding the fetus. Research has revealed that toddlers born to stressed mothers, with high adrenaline and cortisol levels, can have poorer toddler intellectual development and language functioning than toddlers of mothers exposed to little or no stress and attention deficit hyperactive disorder (ADHD) is more likely.
There are minimal research data available evidencing strategies to help reduce anxiety post diagnosis of CHD, especially maternal stress. Parent support groups (PSG) have been shown to be a very effective method of reducing stress and anxiety, however, there has been little specific attention given to the potential benefits of a support group in pre natal CHD parents; only in relation to other methods of support, such as information, access to a specialist nurse or on-line parent websites There has been no specific evidence to evaluate the effectiveness of support groups in this vulnerable group of women. This study aims to examine what support is helpful and effective.REC name
London - Surrey Borders Research Ethics Committee
REC reference
18/LO/0302
Date of REC Opinion
26 Mar 2018
REC opinion
Further Information Favourable Opinion