The association between parent stress, coping and mental health, and neurodevelopmental outcomes of infants with congenital heart disease

Abstract

Caring for the complex needs of a child with congenital heart disease (CHD) can place significant burden on the family. Parent mental health and coping have important influences on resilience and neurodevelopmental outcomes in children with CHD. Objectives: To describe the uptake of a cardiac neurodevelopmental program (CNP), examine parent mental health and coping specific to parenting a child with CHD, and explore the relationship between parent mental health and child neurodevelopmental outcomes. Method: Implementation and uptake of the CNP was examined, and forty-four parents of children with CHD completed the DASS and RSQ-CHD. Results: The CNP showed significant uptake in follow-up and interventions offered including 100% completed brain MRIs of eligible patients, 35% increase in neonatal neurology consults, and 100% of families counselled on neurodevelopmental outcomes. A significant proportion of parents endorsed moderate/severe levels of anxiety (25%), depression (20%), and CHD-specific stress. Parents predominantly engaged in secondary control engagement coping (F(2,64)=75.04, p<.001, η_p²=.70). Secondary control engagement coping was associated with lower parent total stress (r=–.48, p=.006) and anxiety (r=–.47, p=.009). Higher parent stress was associated with higher anxiety (r=.45, p=.016), depression (r=.37, p=.05), more severe types of CHD (r=.35, p=.048), older child age (t(30)= –2.33, p=.03), and lower child cognitive scores (r=–.37, p=.045). More severe types of CHD were associated with lower language scores (F(3,35)=3.50, p=.03). Conclusions: This study highlights the relationship between parent mental health and early child cognitive outcomes in CHD and helps inform models of psychological care to reduce family burden and improve child outcomes.

Keywords:

• Congenital heart disease
• neurodevelopment
• pediatrics
• care directed program
• parent mental health

Acknowledgements

The authors would like to acknowledge the support of the families who informed and directly participated in this work. Further, we would like to thank the Cardiac and Neonatal Neurodevelopment Follow-Up Clinic, as well as the Neurology, Psychology, and MRI teams for their significant contribution and support.

Disclosure statement

The authors do not have any conflict of interests to disclose.

Funding/grant awarding bodies

This work is supported in part by the Medical Psychiatry Alliance, a collaborative health partnership of the University of Toronto, the Centre for Addictions and Mental Health, the Hospital for Sick Children, Trillium Health Partners, the Ontario Ministry of Health and Long-term Care, and an anonymous donor.