Top Things to Know: Development Care for Hospitalized Infants with cCHD
Published: January 17, 2023
- Developmental care (DC) for infants is an approach that individualizes care by observing and interpreting the infant’s behavior and thus modifying the environment and caregiving to meet the developmentally appropriate expectations of the infant’s brain.
- Developmental disorders, disabilities, and delays (DDs) are a common outcome for individuals with complex congenital heart disease (cCHD) and targeting early factors influencing DDs during the neonatal hospitalization for cardiac surgery remains a critical need.
- Despite growing attention by the scientific community, research has explained only one-third of the variance in DDs through biological and medical variables, which are largely non-modifiable.
- Infants with cCHD hospitalized immediately after birth are particularly vulnerable to the interruption of normal developmental processes, offering a critical window for intervention through DC.
- A cornerstone of DC is that it is family-centered, focused on supporting the infant within the context of the family unit. Provision of DC includes a proactive, relational partnership between health care professionals and parents to support active parent engagement, participation, and decision-making in their infant’s care.
- Individualization through cue-based care is another core component of DC that informs environmental modifications such as use of non-pharmacologic comfort interventions, positioning, and the provision of developmentally supportive feeding and nutrition.
- Measurement of the infant stress response is a critical component of describing physiological response to the environment and, importantly, examining effects of interventions using objective biomarkers.
- Developmental care interventions that mitigate DDs in other populations but have not been well-studied in cCHD include parent caregiving during infant hospitalization, cue-based care, pain management, environmental stress reduction, therapeutic positioning and motor support, developmentally supportive feeding and nutrition, and use of human milk.
- Critical gaps in research exist in the use of DC in infants with cCHD. Research evaluating the impact of DC interventions on brain maturation, DD, and parent mental health is needed.
- Currently, DC is not routinely budgeted for or integrated into most pediatric cardiac programs, with varying degrees of resource allocation and infrastructure across programs. Research-based funding to evaluate DC practices will be invaluable to demonstrate effectiveness and cost savings to secure future institutional financial investments.
- Without current evidence of the impact of specific DC practices on outcomes in infants and children with cCHD, determining practice standards and establishing universal and consistent resources remains challenging. Developing early interventions to promote brain maturation, mitigate risk factors, and change the trajectory of neurodevelopment are now urgent research priorities
Citation
Lisanti AJ, Uzark KC, Harrison TM, Peterson JK, Butler SC, Miller TA, Allen KY, Miller SP, Jones CE; on behalf of the American Heart Association Pediatric Cardiovascular Nursing Committee of the Council on Cardiovascular and Stroke Nursing; Council on Lifelong Congenital Heart Disease and Heart Health in the Young; and Council on Hypertension. Developmental care for hospitalized infants with complex congenital heart disease: a science advisory from the American Heart Association. J Am Heart Assoc. 2023;12:e028489. doi: 10.1161/JAHA.122.028489