IN a world-first survey study, researchers from the Centenary Institute and the University of Sydney have highlighted the need for better psychological support for families affected by sudden cardiac death due to a genetic heart disease (SCD).
Published today in the world-renowned Journal of the American Medical Association (JAMA) Internal Medicine, this study identifies a significant risk of family members developing posttraumatic stress and prolonged grief following the sudden cardiac death of a young relative.
“Action needs to be taken to promote the healthy grieving of family members affected by sudden cardiac death,” said Dr Jodie Ingles, lead author of the study.
“We found that around 1 in 2 family members reported significant psychological difficulties, particularly prolonged grief and posttraumatic stress symptoms, following the sudden death of a young relative,” Dr Ingles said.
“Often the family is in shock at their sudden passing as they had no previous diagnosis of a heart condition. Their grief is intensified due to losing their loved one so suddenly at a young age,”
“We found that the family members most at risk of psychological problems were the ones who physically witnessed the death or discovered the body of their loved one – they experienced the most trauma around the death.”
“Current research efforts into SCD predominately focus on the clinical needs and genetic management of family members who have lost a young relative. This study highlights the need to equally address the psychological needs of these individuals.”
Professor Chris Semsarian, University of Sydney Cardiologist, said there are some clear recommendations emerging from this study.
“The sudden death of a young person is a devastating event. Not only do families have to deal with the loss of a loved one, they also have to come to terms with the possibility of ongoing genetic risk to the family,” Professor Semsarian said.
“In the clinic, we do our very best to manage all the needs of our patients and affected family members, but this study highlights the need for a clinical psychologist to be present within our clinical setting.”
This cross-sectional study was conducted over two years with 103 participants from 57 families affected by SCD. This is the first study ever to seek to comprehensively understand the psychological difficulties experienced in this population.
Dr Jodie Ingles is a cardiac genetic counsellor and based in Centenary Institute’s Molecular Cardiology Program as Lead of the Clinical Cardiac Genetics group. Professor Chris Semsarian is a University of Sydney Professor, Cardiologist at RPA Hospital and Head of the Centenary Institute’s Molecular Cardiology Program.
For further information about the Centenary Institute’s genetic heart research visit www.centenary.org.au