Early Emotional, Behavioural and Social Development of Infants and Young Children with Congenital Heart Disease: A Syste
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Early Emotional, Behavioural and Social Development of Infants and Young Children with Congenital Heart Disease: A Systematic Review Tamera Clancy1 · Brigid Jordan2,3 · Carolina de Weerth4 · Frank Muscara2,3
© Springer Science+Business Media, LLC, part of Springer Nature 2019
Abstract The experiences of diagnosis of congenital heart disease (CHD), cardiac surgery and hospitalisation(s) are distressing and represent a significant stressor for a child and family, which may impact psychosocial development. This systematic review provides a synthesis of psychosocial outcomes of infants and young children with congenital heart disease who had cardiac surgery early in life. Twenty-eight studies related to infant and young children’s psychosocial development, specifically emotional, social and behavioural functioning were identified. Variability was related to methodological factors including differences in study design, varying measurement tools and heterogeneous samples. Despite these limitations, the majority of studies were of high quality. The most common finding was a high prevalence of low-severity emotional and behavioural dysregulation. Young children with severe CHD or comorbid conditions experienced greater impairment, with higher rates of externalising behaviour problems, although internalising behaviour problems were also evident. This review integrates findings from literature in the past 28 years on the psychosocial well-being of infants and young children with CHD and demonstrates a risk for emotional, social and behavioural development difficulty, and, importantly, that symptoms of psychosocial impairment are detectable very early in infancy. We advocate for assessment and monitoring of emotional and behavioural regulation and social development to be routinely conducted from infancy to enable prevention and early intervention. Keywords Psychosocial · Development · Infants/young children · Congenital heart disease
Introduction Congenital heart disease (CHD) is a leading cause of death and hospitalisation in newborns and current global estimates suggest nine babies are affected in every 1000 live births (Australian Institute of Health and Welfare, 2017; van der Linde et al., 2011). This corresponds to 1.35 million babies worldwide born with some form of CHD every year, * Tamera Clancy [email protected] 1
Department of Pediatrics, University of Melbourne, Melbourne, Australia
2
Brain and Mind, Murdoch Children’s Research Institute, Melbourne, Australia
3
The Royal Children’s Hospital, Melbourne, Australia
4
Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands
representing a major, global health burden (van der Linde et al., 2011). CHD is a chronic, lifelong condition that, for many patients, requires complex, specialised care across the life course and places a significant burden on children living with CHD, their family members and carers (Celermajer et al., 2016). Cardiac surgery in early life involves freque
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