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A lovely letter from a Heart Centre family

Aug 24 2017
The family of one of our patients has written a beautiful letter of appreciation. It shows how many people and various roles work together to ma...

24 Hour Soccerthon

Aug 23 2017
The annual 24 Hour Soccerthon, which is now in its 6th year, will be running from 25-26 August. Each year this event has helped us raise substan...

Team Harley - City2Surf 2017

Jun 27 2017
Mum Danielle puts it beautifully: "Why we started Team Harley: To raise awareness for Congenital Heart Disease in memory of our amazing...

Psychological Research Programme

Our Psychological Research Programme is dedicated to helping children with heart disease and their families to live their happiest and most fulfilling lives.

Established in 2008 by Dr Nadine Kasparian, we strive for excellence and innovation in the care of infants and children with heart disease and their families, and to support the medical, nursing and allied health teams providing care.  For more information on the studies currently being undertaken within the Psychological Research Programme, click here.

Our team works in partnership with researchers from psychology, paediatric cardiology, cardiothoracic surgery, clinical genetics, nursing, social work, the behavioural sciences, public health, developmental psychobiology, psychiatry, and child life therapy. These partnerships result in innovative studies that push the boundaries of research and clinical practice.

We collaborate with many organisations to stay at the forefront of medical psychology research, including Harvard Medical School, the Imperial College London, University of Genoa Italy, and the Karolinska Institute.

The quality of our research has been recognised through numerous national and international awards, invitations to present at international conferences, government grants, and peer-reviewed publications.

 

Psychological Research Studies

The following list outlines the key studies currently being undertaken by our psychological research team:

Focus Study Description
Infants 'Cherish' study (see more information below) State-wide prospective cohort study assessing infant medical, emotional, behavioural, social and neurodevelopmental outcomes following antenatal or postnatal diagnosis of complex CHD.
'Feeding in Infancy' study Heart Centre-based audit of feeding difficulties and support use in infants after cardiac surgery.
Children and
young people
'Life after Fontan'
study
National registry-based study of quality of life in children, young people and families after completion of a Fontan circulation.
Parents 'Heartfelt' study Series of 53 in-depth interviews with mothers and fathers of an infant with complex CHD.
Families Genetics-based studies Suite of five studies including analysis of the needs of children and families affected by rare genetic conditions such as Long QT Syndrome, CPVT, and Hypertrophic Cardiomyopathy and Brugada Syndrome.
'Finding ways to help families find their way' study Collaboration with the Australian and New Zealand Sudden Cardiac Death Registry to develop clinical protocols for the care of bereaved families.
Resources 'Keeping Connected' study Survey of parents of children with complex CHD to determine unmet information and support needs that can be addressed using web-based technologies.
Health professionals 'Caring for the Carers' study Mixed methods study to assess compassion fatigue and identify ways of better supporting health professionals in cardiac care.

To find out more information about any of these studies you can contact our Head of Psychological Research via our contact page

These studies could not be done without community support.  If you would like to donate towards the psychological research programme, you can do so via our donation page or by calling the Heart Centre Manager on (02) 9845 2326.

 

From the Heart Study

December 2016 Newsletter

 

CHERISH: Caring for the emotional needs of mothers and fathers during pregnancy and beyond

Becoming a parent is one of the most significant transitions in life, and many couples can find it challenging. For mothers-to-be, the physical changes of pregnancy can be accompanied by many emotional changes. For both parents, the diagnosis of congenital heart disease in their child can be an additional strain.

The CHERISH study is particularly interested in finding out more about the emotional needs of parents-to-be during pregnancy, and the first 12 months following their baby's diagnosis of congenital heart disease.

This study will be the first in the world to explore the emotional changes that occur for parents before and after their baby's birth, and how these changes can shape the developing relationship between parents and their infant. The study will also focus on ways in which to best support parent-infant bonding during this challenging period, and the difficulties that infants and families may experience after cardiac surgery.

CHERISH brings together a team of researchers and clinicians from a broad range of disciplines, including psychology, cardiology, cardiac surgery, obstetrics, neonatology, psychiatry, nursing, biology, and genetics.  We hope to include approximately 250 families in the study, including families with children diagnosed with heart disease before birth, those diagnosed after birth, and families with no diagnosis of CHD.

This study has received funding from a variety of sources but still needs further support in order to undertake all areas of research, including the measurement of cortisol (stress hormone) levels in both children and parents.

Understanding the impact of diagnosis during an already challenging time of becoming a parent will allow us to explore and identify what will most benefit families at critical moments.  This means that we can tailor our support programme to ensure that we're meeting the needs of families from the time of diagnosis onwards.


January 2017 Newsletter

 

 

 

 

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