Early Emotional, Behavioural and Social Development of Infants and Young Children with Congenital Heart Disease: A Systematic Review.

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.

Long-term alteration of the hypothalamic-pituitary-adrenal axis in children undergoing cardiac surgery in the first 6 months of life.

Children with congenital heart disease (CHD) have poorer neurodevelopmental and psychological outcomes. The mechanisms underlying this remain unclear. One mechanism could be that the stressful experience of cardiac surgery early in life influences long-term hypothalamic-pituitary-adrenal (HPA) axis regulation. Dysregulation of the HPA axis has been linked to poorer neurocognitive and psychological outcomes in other study populations. This case-control study aims to compare HPA-axis regulation (circadian rhythm and reactivity) using salivary cortisol in 3- to 5-year-olds with CHD who did and did not have cardiac surgery prior to 6 months of age. Saliva samples for cortisol analysis were collected from preschoolers with CHD (N = 28, Males = 18, Females = 10) over two weekend days, and before and after an echocardiogram. Caregiver education, child age, sex, and cardiac disease severity score were included as confounders. Multilevel analysis (hierarchical linear modeling) was used to analyze the data. The analysis for the cortisol circadian rhythm shows that the early surgery group has a flatter diurnal slope secondary to lower mean weekend morning waking cortisol levels than controls but similar mean bed time values. Multilevel analysis of the stress response to an echocardiogram indicates that the early surgery group has an increased response when compared to the control group. This is the first study to show that cardiac surgery prior to 6 months of age is associated with a different pattern of HPA-axis regulation at 3-5 years of age.

Protocol for a study of the psychosocial determinants of health in early childhood among children with cystic fibrosis.

AIMS: To investigate the causal associations between family relationships, family functioning, social circumstances and health outcomes in young children with cystic fibrosis. BACKGROUND: The anticipated health gains for patients with cystic fibrosis, promised by early diagnosis through newborn screening, have yet to be fully realized, despite advances in cystic fibrosis health care with aggressive management in multidisciplinary clinics and the development of specific medications. Adverse psychosocial functioning may underpin the current lack of progress as it is well recognized that compromised early parent-child attachment relationship experiences and adverse social circumstances have negative impacts on lifelong health status and health resource use, even in healthy children. DESIGN: A cross-sectional (initial) and longitudinal (progressive), multicentre study of children aged 3 months-6 years with cystic fibrosis, who have been diagnosed by newborn screening. METHODS: Questionnaire and observational measures of parent psychosocial functioning, parenting and parent-child attachment and social markers; and including clinical outcomes of regular health surveillance with clinical, lung imaging (computerized tomography) and bronchoalveolar lavage for airway microbiology and inflammation. CONCLUSION: This will be the first study to investigate the causal effect of psychosocial functioning, parenting and attachment on physical health outcome measures in children with cystic fibrosis.

Early mother-infant relationships after cardiac surgery in infancy.

OBJECTIVE: The critical importance of a secure mother-infant attachment relationship for long-term physical and mental health of the child is well established. Our study aim was to explore mothers' subjective experience of the mother-infant relationship after discharge from hospital following neonatal cardiac surgery. DESIGN: Participants were 97 infants who underwent cardiac surgery before the age of 3 months and their mothers. Mothers completed Maternal Postnatal Attachment Scale (MPAS) and Edinburgh Postnatal Depression Scale (EPDS) questionnaires and were interviewed after the infant had been discharged home for 4 weeks. Interviews were analysed using inductive thematic analysis. RESULTS: Mean sores on the MPAS were similar to community norms (84.5 (SD 7.2) vs 84.6 (SD 7), p=0.47). 66/91 mothers interviewed described impacts which encompassed four themes; enhanced emotional ties (n=34, 37%), 'bonding' difficulties (n=22, 23%), anxiety and worry (n=17, 19%), and caregiving behaviours (n=10, 11%). Mothers who described bonding difficulties had lower MPAS scores (mean 80.6 (SD 10) vs 85.7 (SD 5.7), p=0.0047), were more likely to have a prenatal diagnosis of the cardiac abnormality (OR 2.6, 95% CI 0.89 to 8.9) and higher EPDS score (9.1 (SD 5.3) vs 6.2 (SD 3.9), p=0.01). Higher EPDS scores were associated with lower MPAS scores (r=-0.44, p=0.0001). CONCLUSIONS: Most mothers report a positive relationship with their infant following cardiac surgery but almost a quarter have difficulties forming a strong emotional tie. Clinical care (including prenatal) of the infant with congenital heart disease requiring surgery should include screening, assessment and appropriate referral for early intervention if mothers are struggling to form a bond with their infant.

Trauma reactions in mothers and fathers after their infant's cardiac surgery.

OBJECTIVE: To investigate the prevalence and nature of trauma symptoms in mothers and fathers of infants who had cardiac surgery. METHOD: Parents of infants who underwent cardiac surgery before 3 months of age were recruited at the time of surgery. 77 mothers and 55 fathers completed the Acute Stress Disorder Scale 1 month after their infant was discharged from hospital. RESULTS: 26 of 77 (33.8%) mothers and 10 of 55 (18.2%) fathers satisfied criteria for acute stress disorder. For all symptom clusters, except dissociation, mothers had significantly higher mean scores (and therefore higher levels of symptoms) than did fathers, ps = .01, -.02. 83 percent of parents endorsed at least 1 trauma symptom and 11.4% endorsed only 1 symptom at a clinical level. Symptoms of dissociation were the most commonly endorsed by both parents, with each symptom in that cluster being endorsed at a clinical level by at least 26% of parents. CONCLUSIONS: Consistent with our hypotheses, approximately one-third of parents overall, as well as one-third of mothers and close to one-fifth of fathers, experienced trauma symptoms consistent with a diagnosis of acute stress disorder. Most parents experienced at least one symptom at a clinical level, with symptoms of dissociation being the most commonly endorsed symptom cluster. These findings highlight the need for clinical supports for parents.

Infant cardiac surgery and the father-infant relationship: feelings of strength, strain, and caution.

OBJECTIVE: The purpose of this study was to examine the father-infant relationship in infants with congenital heart disease (CHD). METHOD: Sixty-three fathers whose infants had cardiac surgery before 3 months of age reported on their attachment relationship with their infant within two months of hospital discharge using both qualitative and quantitative methods. RESULTS: Mean scores on the Paternal Postnatal Attachment Scale and scores for patience and tolerance were not different from previously published community norms, ps>.05. Scores for pleasure and interaction (t[50]=-2.383, p=.021, CI: -2.93, -.25) and affection and pride subscale (t[56]=-2.935, p=.005, CI: -1.20, -.23) were significantly lower than community norms. Additionally, 37% of fathers described feeling a strong relationship with their infant whereas 17% reported initial apprehension or condition-specific worry. Fathers with infants who spent fewer days at home prior to admission reported feelings of relationship strain as well as lower pleasure in interaction, affection and pride, patience and tolerance, and overall attachment quality. CONCLUSION: Having an infant with CHD affects some father-infant relationships differently than others with some fathers feeling closer to their infant and other fathers feeling reservation about getting too close. One explanation for these differences may be that spending a great deal of time in hospital restricts the number and quality of interactions infants have with their fathers. Opportunities for intervention include clinical psychosocial services encouraging fathers to interact with and provide physical care of their infant, especially if fathers perceive their infant as medically fragile.