Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association.

Over the past decade, new research has advanced scientific knowledge of neurodevelopmental trajectories, factors that increase neurodevelopmental risk, and neuroprotective strategies for individuals with congenital heart disease. In addition, best practices for evaluation and management of developmental delays and disorders in this high-risk patient population have been formulated based on literature review and expert consensus. This American Heart Association scientific statement serves as an update to the 2012 statement on the evaluation and management of neurodevelopmental outcomes in children with congenital heart disease. It includes revised risk categories for developmental delay or disorder and an updated list of factors that increase neurodevelopmental risk in individuals with congenital heart disease according to current evidence, including genetic predisposition, fetal and perinatal factors, surgical and perioperative factors, socioeconomic disadvantage, and parental psychological distress. It also includes an updated algorithm for referral, evaluation, and management of individuals at high risk. Risk stratification of individuals with congenital heart disease with the updated categories and risk factors will identify a large and growing population of survivors at high risk for developmental delay or disorder and associated impacts across the life span. Critical next steps must include efforts to prevent and mitigate developmental delays and disorders. The goal of this scientific statement is to inform health care professionals caring for patients with congenital heart disease and other key stakeholders about the current state of knowledge of neurodevelopmental outcomes for individuals with congenital heart disease and best practices for neuroprotection, risk stratification, evaluation, and management.

Perceived family-centered care and post-traumatic stress in parents of infants cared for in the paediatric cardiac intensive care unit.

BACKGROUND: Family-centred care (FCC), while a core value of paediatric hospitals, has not been well-studied in the paediatric cardiac intensive care unit (PCICU). AIMS: To describe parents' perceptions of FCC provided by nurses in the PCICU during their infant's recovery from neonatal cardiac surgery and explore associations of perceptions of FCC on parent post-traumatic stress (PTS) 4 months post-discharge. STUDY DESIGN: Data obtained from a previously conducted randomized clinical trial (RCT) on telehealth home monitoring after neonatal cardiac surgery at three free-standing paediatric hospitals were analysed from a subset of 164 parents who completed the FCC Scale at hospital discharge, which measures a parent's experience of nursing care that embodies core principles of FCC. The RCT intervention was provided after hospital discharge, having no influence on parent's perception of FCC. The intervention also had no effect on PTS. RESULTS: Perceived FCC was lowest for items 'nurses helped me feel welcomed' and 'nurses helped me feel important in my child's care'. Having 12%-19% points lower perception of FCC at hospital discharge was associated with parent experience of six or more PTS symptoms, at least moderate PTS symptom severity, or PTS disorder diagnosis at 4-month follow-up. Every 10% increase in parental perceptions of FCC was associated with less PTS symptoms (ß = -0.29, SE = 0.12; p = .02) and lower PTS symptom cluster scores of arousal (ß = -0.18, SE = 0.08; p = .02). CONCLUSIONS: Parents who perceived lower FCC during their infants' hospitalization were at increased risk for the development of PTS symptoms, more PTS symptom severity and PTS disorder diagnosis 4-months post-discharge. RELEVANCE TO CLINICAL PRACTICE: Nurses have a prominent role to support the implementation of FCC for infants with cardiac defects and their parents. FCC may positively influence overall parent mental health and well-being, reducing the trauma and distress of the PCICU experience.

Infant's difficult temperament characteristics predict poor quality of life in parents of infants with complex CHDs post-cardiac surgery.

BACKGROUND & AIMS: Parents of infants with complex CHDs often describe their infants as especially fussy, irritable, and difficult to sooth, which together with the illness caretaking demands add to their stress. Little is known about how the behavioural style or temperament in the early months after discharge relates to parental quality of life. This study aimed to explore the associations between early infant temperament characteristics and parental quality of life in parents of infants with complex CHD. METHODS: This descriptive, cross-sectional study, utilised data collected in a previously described multisite randomised clinical trial in the United States. Multivariable linear regression models were used to examine the associations of interest. FINDINGS: Results demonstrated negative significant associations between most infant temperament subscales and parental quality of life. Higher scores on the Activity (ß = -3.03, p = 0.021), Approach (ß = -1.05, p = 0.021), Adaptability (ß = -3.47, p = 0.004), Intensity (ß = -2.78, p = 0.008), Mood (ß = -4.65, p < 0.001), and Distractibility (ß = -3.36, p = 0.007 were all significantly associated with lower parental quality of life scores, adjusting for parental dyadic adjustment, insurance type, number of medications, and number of unscheduled cardiologist visits. CONCLUSIONS: Parental perceptions of infant's difficult behavioural style or temperament characteristics appear to be associated with poorer quality of life in parents of infants with complex CHD post-cardiac surgery. Findings can be used in the screening process of families at potential risk of increased stress and poor illness adaptation and in the design of interventions to target parental mental health in this vulnerable patient population.

Developmental care pathway for hospitalised infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative.

Infants and children born with CHD are at significant risk for neurodevelopmental delays and abnormalities. Individualised developmental care is widely recognised as best practice to support early neurodevelopment for medically fragile infants born premature or requiring surgical intervention after birth. However, wide variability in clinical practice is consistently demonstrated in units caring for infants with CHD. The Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative, formed a working group of experts to create an evidence-based developmental care pathway to guide clinical practice in hospital settings caring for infants with CHD. The clinical pathway, "Developmental Care Pathway for Hospitalized Infants with Congenital Heart Disease," includes recommendations for standardised developmental assessment, parent mental health screening, and the implementation of a daily developmental care bundle, which incorporates individualised assessments and interventions tailored to meet the needs of this unique infant population and their families. Hospitals caring for infants with CHD are encouraged to adopt this developmental care pathway and track metrics and outcomes using a quality improvement framework.

Nurses' perceptions and use of near infrared spectroscopy in paediatric cardiac intensive care.

BACKGROUND: Near-infrared spectroscopy (NIRS) is a non-invasive technology that estimates regional oxygen saturation. Literature demonstrates that NIRS can provide valuable data for clinical staff. However, little research has addressed the nursing care and management of NIRS in the critical care environment. AIMS: To assess nurses' perception around the use of NIRS and current NIRS practice within paediatric cardiac intensive care unit (PCICUs). STUDY DESIGN: A 53-item cross-sectional electronic survey was developed to assess indications for NIRS, critical value thresholds and interventions, barriers to use, policies and procedures, and nursing perceptions. Descriptive statistics were used to summarize and aggregate data. RESULTS: Among the 28 responding sites (63.6% response rate), usage of NIRS was variable and patient-dependent. Most nurses reported using NIRS in patients with unstable physiology such as post-operative single ventricle (n = 25, 89.3%) and concern for shock (n = 21, 75.0%). Critically low cerebral values varied among respondents from less than 40 (n = 3, 10.7%) to less than 60 (n = 4, 14.3%), with lower critical values permitted for single ventricle physiology: less than 40 (n = 8, 28.6%) to less than 50 (n = 6, 21.4%). Reported barriers to using NIRS included skin breakdown (n = 9, 32.1%), lack of consistency in decision-making among physicians (n = 13, 46.4%), and not using NIRS data when developing a plan of care (n = 11, 39.3%). Most (n = 24, 85.7%) nurses reported that NIRS provided valuable information and was perceived to be beneficial for patients. CONCLUSIONS: NIRS monitoring is a common technology in the care of complex congenital heart disease patients. Most nurses valued this technology, but inconsistencies and practicalities around its use in guiding patient management were found to be problematic. RELEVANCE TO CLINICAL PRACTICE: NIRS is commonly used in the PCICU and although nurses perceived NIRS to be useful for their practice, the variability in the interpretation of values and inconsistent protocols and decision-making by physicians was challenging.

Developmental Care Practice and Documentation Variability in the Cardiac ICU.

OBJECTIVES: Describe variability in developmental care practices, as documented in the electronic health record, for infants undergoing congenital heart surgery. DESIGN: Multicenter, retrospective, cohort study. SETTING: Six pediatric cardiac centers. PATIENTS: One hundred eighty-two infants undergoing one of three index operations: Norwood palliation, aortic arch reconstruction with ventricular septal defect closure, or arterial switch. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Core domains of developmental care encompassing pain assessment, feeding, infant holding, caregiver involvement, therapy, and psychosocial services were reviewed. Practices varied across individuals, institutions, and the hospital stay. At five of six sites, greater than 90% of individuals had physical or occupational therapy services as part of their care, but the day of first evaluation ranged from day of admission to postoperative day 28. Similar patterns were seen in feeding team and social work involvement. Consistent documentation of developmental care was dependent on the domain and site. Of the total days reviewed (n = 1,192), pain scores were documented in 95%. In those same days, documentation of whether or not a patient was out of the crib to be held varied by site from 11% to 93%. Type of oral feeding, breast versus bottle, was documented on the day prior to discharge 48% of the time. CONCLUSIONS: There are significant, quantifiable variations in documented developmental care practices at both the individual and site level. More reliable documentation of developmental care practices is required to associate these variables with later outcomes and investigate disparities in individualized developmental care practices.

Parental Post-traumatic Stress and Healthcare Use in Infants with Complex Cardiac Defects.

OBJECTIVE: To examine the associations between post-traumatic stress of parents of infants with complex congenital heart defects and their healthcare use for their infants during the early months of life. STUDY DESIGN: The current study is a secondary data analysis from a randomized controlled trial in which 216 parent-infant dyads were recruited from 3 cardiac intensive care units of large pediatric centers in Northeastern America. The current sample included 153 dyads with post-traumatic stress data at hospital discharge and at 4-months' follow-up. Poisson regressions were used to estimate the effect of post-traumatic stress change scores on number of emergency department (ED) visits, unscheduled cardiologist visits, and unscheduled pediatrician visits outcomes. RESULTS: Infants whose parents gained post-traumatic stress disorder over the study period were at increased risk for ED visits and unscheduled cardiologist visits. Increased symptom severity predicted more unscheduled cardiologist visits and more unscheduled pediatrician visits. Increased symptom clusters (avoidance, arousal, re-experiencing) predicted more ED visits, more unscheduled cardiologist visits, and more unscheduled pediatrician visits. CONCLUSIONS: Parents of infants with cardiac conditions may experience post-traumatic stress following cardiac surgery, which can be linked to greater healthcare use. Findings highlight the importance of screening and treating post-traumatic stress to preserve parental mental health and prevent adverse outcomes.

Role alteration predicts anxiety and depressive symptoms in parents of infants with congenital heart disease: a pilot study.

BACKGROUND: Parents of infants born with critical congenital heart disease are at risk for adverse mental health symptoms. The purpose of this study was to identify infant-, parent-, and environmental-based stressors for mothers and fathers after their infants' cardiac surgery, and to explore relationships between stressors and mental health symptoms of anxiety and depression. METHODS: This study enrolled 28 biological mother-father dyads from families admitted to the paediatric cardiac intensive care unit for cardiac surgery at one free-standing children's hospital in the Northeast. Paired t-tests were used to examine group differences between mothers and fathers on perceived stressors and mental health symptoms, while linear mixed effects modelling was used to explore the predictive relationship between perceived stressors, personal factors, and mental health symptoms. RESULTS: Mothers reported higher perceived stressor scores of parental role alteration (t = 4.03, p < 0.01) and infant appearance and behaviour (t = 2.61, p = 0.02), and total perceived stress (t = 2.29 p = 0.03), compared to fathers. Mothers also reported higher anxiety (t = 2.47, p = 0.02) and depressive symptoms (t = 3.25, p < 0.01) than fathers. In multivariable analysis, parental role alteration significantly predicted anxiety (t = 5.20, p < 0.01, d = 0.77) and depressive symptoms (t = 7.09, p < 0.01, d = 1.05) for mothers and fathers. The consensus subscale of the Dyadic Adjustment Scale also significantly predicted depressive symptoms (t = -2.42, p = 0.02, d = 0.04). CONCLUSION: Parents were distressed during their infant's admission for surgical repair for critical congenital heart disease. Parental role alteration was significantly associated with parental anxiety and depressive symptoms, while poor relationship quality was associated with depressive symptoms, highlighting areas for potential nursing-led psychosocial led interventions.

A Collaborative Learning Assessment of Developmental Care Practices for Infants in the Cardiac Intensive Care Unit.

OBJECTIVE: Assess differences in approaches to and provision of developmental care for infants undergoing surgery for congenital heart disease. STUDY DESIGN: A collaborative learning approach was used to stratify, assess, and compare individualized developmental care practices among multidisciplinary teams at 6 pediatric heart centers. Round robin site visits were completed with structured site visit goals and postvisit reporting. Practices of the hosting site were assessed by the visiting team and reviewed along with center self-assessments across specific domains including pain management, environment, cue-based care, and family based care coordination. RESULTS: Developmental care for infants in the cardiac intensive care unit (CICU) varies at both a center and individual level. Differences in care are primarily driven by variations in infrastructure and resources, composition of multidisciplinary teams, education of team members, and use of developmental care champions. Management of pain follows a protocol in most cardiac intensive care units, but the environment varies across centers, and the provision of cue-based infant care and family-based care coordination varies widely both within and across centers. The project led to proposed changes in clinical care and center infrastructure at each participating site. CONCLUSIONS: A collaborative learning design fostered rapid dissemination, comparison, and sharing of strategies to approach a complex multidisciplinary care paradigm. Our assessment of experiences revealed marked variability across and within centers. The collaborative findings were a first step toward strategies to quantify and measure developmental care practices in the cardiac intensive care unit to assess the association of complex inpatient practices with long-term neurodevelopmental outcomes.

Skin-to-Skin Care Is a Safe and Effective Comfort Measure for Infants Before and After Neonatal Cardiac Surgery.

OBJECTIVES: To determine the effect of skin-to-skin care on stress, pain, behavioral organization, and physiologic stability of infants with critical congenital heart disease before and after neonatal cardiac surgery. DESIGN: A baseline response-paired design was used, with infants acting as their own controls before, during, and after skin-to-skin care at two distinct time points: once in the preoperative period (T1) and once in the postoperative period (T2). SETTING: Cardiac ICU and step-down unit in a large metropolitan freestanding children's hospital. SUBJECTS: Convenience sample of 30 infants admitted preoperatively for critical congenital heart disease. INTERVENTIONS: Eligible infants were placed into skin-to-skin care for 1 hour with their biological mothers once each at T1 and T2. MEASUREMENTS AND MAIN RESULTS: Measurements of stress (salivary cortisol), pain and behavior state (COMFORT scale), and physiologic stability (vital signs) were assessed immediately before skin-to-skin care, 30 minutes into skin-to-skin care, and 30 minutes after skin-to-skin care ended.At both T1 and T2, infant pain scores were significantly decreased (p < 0.0001) and infants moved into a calmer behavior state (p < 0.0001) during skin-to-skin care as compared to baseline. At T1, infants also had significantly reduced heart rate (p = 0.002) and respiratory rate (p < 0.0001) and increased systolic blood pressure (p = 0.033) during skin-to-skin care. At both T1 and T2, infant cortisol remained stable and unchanged from pre-skin-to-skin care to during skin-to-skin care (p = 0.096 and p = 0.356, respectively), and significantly increased from during skin-to-skin care to post-skin-to-skin care (p = 0.001 and p = 0.023, respectively). Exploratory analysis revealed differences in cortisol reactivity for infants with higher baseline cortisol (> 0.3 µg/dL) versus lower (≤ 0.3 µg/dL) prior to skin-to-skin care. Infants with higher baseline cortisol at T2 experienced significantly reduced cortisol during skin-to-skin care (p = 0.025). No significant differences in demographics or baseline variables were found between infants in either group. CONCLUSIONS: Skin-to-skin care is a low-cost, low-risk intervention that promotes comfort and supports physiologic stability in infants before and after neonatal cardiac surgery.

Parental stress and resilience in CHD: a new frontier for health disparities research.

Parental stress is a universal experience for parents who have children diagnosed with CHD and has been studied within the context of the child's illness, but not through a broader health disparity lens. This paper provides a thorough synthesis of the current literature on parental stress addressing disparities in parents of children with CHD. Several theories and models from within this literature are described and a new comprehensive framework, the Parental Stress and Resilience in CHD Model, is presented. Future research and clinical implications are discussed.

Coping with the Stress in the Cardiac Intensive Care Unit: Can Mindfulness Be the Answer?

BACKGROUND: Mothers of infants with complex congenital heart disease are exposed to increased stress which has been associated with numerous adverse health outcomes. The coping mechanisms these mothers use critically effect the familial illness adaptation and most likely infant outcomes. Currently no data-based strategies have been developed for mothers to facilitate their coping, and proactively promote their adaptation in the critical care settings. A potential strategy is mindfulness which is currently used in other clinical settings with stress-reduction effects. PURPOSE: (1) To investigate coping mechanisms of mothers whose infant with complex CHD is admitted in the CICU, and (2) to explore the acceptability and feasibility of mindfulness as a potential stress-reduction intervention for these mothers. DESIGN AND METHODS: A descriptive qualitative study obtained perspectives from 14 mothers during three focus groups. A qualitative conventional content analysis was performed using ATLAS.ti. RESULTS: In congruence with the Stress and Coping framework, themes identified mostly emotion-regulatory coping mechanisms including both active and passive strategies such as positive thinking, denial, distraction, relying on support systems, and focusing on baby. Mindfulness was an acceptable and feasible approach for most participants, however, practice unfamiliarity, time and space concerns, and personal preferences were identified as potential barriers for future dissemination. CONCLUSIONS: Mindfulness can potentially promote illness adaptation by utilization of active coping mechanisms. Early interventions can provide immediate, and potentially long-term stress relief. Intervention settings, format, and time-frame should be flexibly tailored to the trajectory of parental distress and familial adjustment.

Developmental Care in North American Pediatric Cardiac Intensive Care Units: Survey of Current Practices.

BACKGROUND: Developmental care practices across pediatric cardiac intensive care units (CICUs) have not previously been described. PURPOSE: To characterize current developmental care practices in North American CICUs. METHODS: A 47-item online survey of developmental care practices was developed and sent to 35 dedicated pediatric CICUs. Staff members who were knowledgeable about developmental care practices in the CICU completed the survey. FINDINGS/RESULTS: Completed surveys were received from 28 CICUs (80% response rate). Eighty-nine percent reported targeted efforts to promote developmental care, but only 50% and 43% reported having a developmental care committee and holding developmental rounds, respectively. Many CICUs provide darkness for sleep (86%) and indirect lighting for alertness (71%), but fewer provide low levels of sound (43%), television restrictions (43%), or designated quiet times (21%). Attempts to cluster care (82%) and support self-soothing during difficult procedures (86%) were commonly reported, but parental involvement in these activities is not consistently encouraged. All CICUs engage in infant holding, but practices vary on the basis of medical status and only 46% have formal holding policies. IMPLICATIONS FOR PRACTICE: Implementation of developmental care in the CICU requires a well-planned process to ensure successful adoption of practice changes, beginning with a strong commitment from leadership and a focus on staff education, family support, value of parents as the primary caregivers, and policies to increase consistency of practice. IMPLICATIONS FOR RESEARCH: Future studies should examine the short- and long-term effects of developmental care practices on infants born with congenital heart disease and cared for in a pediatric CICU.

Mental Health Symptoms in Parents of Infants 3 Months After Discharge Following Neonatal Cardiac Surgery.

BACKGROUND: Parents of newborns with congenital heart disease (CHD) are at risk for anxiety, depression, and post-traumatic stress. Few studies have examined whether modifiable factors that influence parents' mental health after discharge are present during postoperative care in the pediatric cardiac intensive care unit (PCICU). OBJECTIVE: To describe mental health symptoms of parents of infants with CHD 3 months after PCICU discharge and to determine factors during the PCICU stay that are predictors of such symptoms. METHODS: A longitudinal cohort pilot study of 56 parents (28 mother-father dyads) of 28 infants with CHD. During the first postoperative week after cardiac surgery, parents completed questionnaires measuring factors potentially influencing mental health. Three months after discharge, 42 parents of 22 infants completed validated measures of anxiety, depression, and posttraumatic stress. RESULTS: Three months after discharge, 26% of parents had clinically elevated levels of anxiety symptoms, 21% had clinically significant levels of depressive symptoms, and 19% had posttraumatic stress symptoms. In multi-variable analysis, parental role alteration in the PCICU was predictive of anxiety (P = .002), depressive (P = .02), and posttraumatic stress (P = .02) symptoms 3 months after discharge. Higher education level was predictive of anxiety symptoms (P = .009). Postnatal CHD diagnosis was predictive of posttraumatic stress symptoms (P = .04). CONCLUSIONS: Parental role alteration perceived by parents during the PCICU stay is a modifiable stressor contributing to adverse mental health symptoms 3 months after discharge. Interventions targeting parental role alteration in the PCICU are critically needed.

Parental role alteration strongly influences depressive symptoms in mothers of preoperative infants with congenital heart disease.

BACKGROUND: Mothers of infants with congenital heart disease are at risk for depression. OBJECTIVES: This study explored the influence on maternal depressive symptoms of several known factors for mothers in the pediatric cardiac intensive care unit, including perceived stressors, attachment, and anxiety. METHODS: This study was a secondary analysis of 30 mothers of infants awaiting cardiac surgery. Linear regressions were calculated to determine the relationships between perceived stressors, maternal attachment, anxiety, and maternal depressive symptoms. RESULTS: Nearly half of mothers reported depressive symptoms above the measure cut-off score, indicating they were at risk for likely clinical depression. Subscales of perceived stress explained 61.7% of the variance in depressive symptoms (F = 11.815, p<0.0001) with parental role alteration subscale as the strongest predictor (standardized beta=0.694, p = 0.03). CONCLUSIONS: Findings underscore the importance of mental health screening and instituting nursing practices to enhance parental role for mothers of infants awaiting cardiac surgery.

Skin-to-Skin Care is Associated with Reduced Stress, Anxiety, and Salivary Cortisol and Improved Attachment for Mothers of Infants With Critical Congenital Heart Disease.

OBJECTIVE: To estimate the effect of skin-to-skin care (SSC) on biobehavioral measures of stress (anxiety and salivary cortisol) and attachment (attachment scores and salivary oxytocin) of mothers before and after their infants' neonatal cardiac surgery. DESIGN: A prospective interventional, baseline response-paired pilot study. SETTING: Cardiac center of a large, metropolitan, freestanding children's hospital. PARTICIPANTS: Thirty women whose infants were hospitalized for neonatal cardiac surgery. METHODS: Participants acted as their own controls before, during, and after SSC at two time points: once before and once after surgery. We measured the stress response of mothers, as indicated by self-reported scores of anxiety and maternal salivary cortisol, and maternal-infant attachment, as indicated by self-reported scores and maternal salivary oxytocin. RESULTS: Significant reductions in self-reported scores of anxiety and salivary cortisol were found as a result of SSC at each time point, as well as increased self-reported attachment. No significant differences were found in oxytocin. CONCLUSION: Our findings provide initial evidence of the benefits of SSC as a nurse-led intervention to support maternal attachment and reduce physiologic and psychological stress responses in mothers of infants with critical congenital heart disease before and after neonatal cardiac surgery.