Parental decision-making in Hypoplastic Left Heart Syndrome
Research type
Research Study
Full title
Parental decision-making in Hypoplastic Left Heart Syndrome
IRAS ID
142697
Contact name
Gurleen Sharland
Contact email
Sponsor organisation
Guys and St Thomas' NHS Foundation Trust
Research summary
Hypoplastic left heart syndrome is a rare form of congenital heart disease in which the left side of the heart fails to develop normally during pregnancy. There are four principal options available in the management of this condition: a three-staged reconstructive surgical technique, cardiac transplantation, abortion of the pregnancy and comfort care only. Cardiac transplantation is not currently offered in the UK. All of the surgical options available are palliative operations which carry a high risk and ultimately result in early death. Within this study we will interview parents who received a diagnosis of Hypoplastic Left Heart syndrome (HLHS) during pregnancy about the decision-making process they underwent. We hope to recruit a mixture of families who chose surgical intervention (either those who have a surviving child with HLHS or those who have lost a child born with HLHS) and those who chose abortion or comfort care. The study aims to generate hypotheses about how exactly parents make decisions following an antenatal diagnosis of HLHS. The aim is to better understand the feelings and emotions that parents experience following a prenatal diagnosis of HLHS and to study the factors which influence parental decision-making. We hope to investigate the role that doctors play in presenting the treatment options and to clarify parental preferences surrounding the role of the doctor in the decision-making process. We ultimately hope to compare the data collected to results from a similar study conducted in the United States in order to compare the parental experience between the UK and the US.
REC name
London - Surrey Research Ethics Committee
REC reference
14/LO/1557
Date of REC Opinion
12 Sep 2014
REC opinion
Favourable Opinion