Salivary Diurnal Cortisol Predicts Post-Traumatic Stress Symptoms in Parents of Infants With Congenital Heart Disease.

BACKGROUND: Parents of infants born with congenital heart disease (CHD) who require open heart surgery after birth are at risk for prolonged psychological distress. Even after their infants are discharged, parents may experience anxiety, depressive, and post-traumatic stress (PTS) symptoms; yet, it is unclear which parents are at greater risk for ongoing symptoms. The purpose of this study was to explore whether measures of the biomarker cortisol in parents during their infants' postoperative period were associated with subsequent psychological distress symptoms at three-month post discharge. METHODS: This was a prospective, longitudinal exploratory study of 40 parents of infants with CHD after open heart surgery using consecutive enrollment. Parents provided diurnal saliva samples for two consecutive days in the postoperative period. Six predictors were summarized and generated including waking cortisol, bedtime cortisol, cortisol awaking response, area under curve with respect to the ground (AUCg), cortisol index, and cortisol slope. Self-report outcome measures on anxiety, depressive, and PTS symptoms were collected three-months post-discharge. Linear mixed models examined the associations between each predictor and each outcome while accounting for within-dyad variance using an unstructured covariance matrix. RESULTS: Cortisol AUCg was a predictor of PTS at three-months post-discharge (ß = .34, p = .03, Cohen's d = 2.05). No significant relationships were found with the other cortisol measures. CONCLUSIONS & IMPLICATIONS: Findings suggest that cortisol area under curve may help to identify parents at risk for increased PTS in the months following their infants' hospitalization for cardiac surgery, serving as a foundation for future study in this area.

Developmental Care for Hospitalized Infants With Complex Congenital Heart Disease: A Science Advisory From the American Heart Association.

Developmental disorders, disabilities, and delays are a common outcome for individuals with complex congenital heart disease, yet targeting early factors influencing these conditions after birth and during the neonatal hospitalization for cardiac surgery remains a critical need. The purpose of this science advisory is to (1) describe the burden of developmental disorders, disabilities, and delays for infants with complex congenital heart disease, (2) define the potential health and neurodevelopmental benefits of developmental care for infants with complex congenital heart disease, and (3) identify critical gaps in research aimed at evaluating developmental care interventions to improve neurodevelopmental outcomes in complex congenital heart disease. This call to action targets research scientists, clinicians, policymakers, government agencies, advocacy groups, and health care organization leadership to support funding and hospital-based infrastructure for developmental care in the complex congenital heart disease population. Prioritization of research on and implementation of developmental care interventions in this population should be a major focus in the next decade.

Early growth trajectory is associated with psychological stress in parents of infants with congenital heart disease, but moderated by quality of partner relationship.

PURPOSE: To explore the relationships between growth trajectory, parenting stress and parent post-traumatic stress (PTS), in infants with congenital heart disease, and the moderating role of parents' dyadic adjustment on those associations. DESIGN AND METHODS: A secondary analysis of data from the REACH Telehalth home monitoring multi-site randomized clinical trial. Parents completed the Parenting Stress Index (PSI), Post-traumatic diagnostic scale, and the Dyadic Adjustment Scale. Multivariate logistic regression models were used to examine the associations of interest. RESULTS: During 4-month follow-up after hospital discharge, parents of infants with 'Never recovered' and 'Partially recovered' growth trajectories had 2-5 times higher odds of experiencing higher stress on the Parent Domain (OR = 4.8, CI = 1.3-18.0; OR = 2.5, CI = 1.0-5.9, respectively) than those with stably grown infants. Parents of "Never recovered" infants had 4 times higher odds of PTS symptoms (OR = 3.9; CI = 1.6-9.9). Parental dyadic adjustment moderated the relationships. Parents of 'Partially recovered' infants and having low dyadic adjustment had 3-5 times higher odds of high stress on all PSI domains, while parents with high dyadic adjustment did not have increased stress due to poor infant growth. Parents of "Never recovered" infants had four times higher odds of PTS symptom, even with high dyadic adjustment. CONCLUSIONS: Infant growth trajectory over the first four months is associated with parenting stress and PTS. Quality of partner relationship moderates some of these associations. PRACTICE IMPLICATIONS: Infant growth should serve as a screening aid for identifying parents at psychological risk. Interventions targeting the quality of partner relationship may support parental coping and mitigate stress. CLINICAL TRIAL REGISTRATION: NCT01941667.

New insights on growth trajectory in infants with complex congenital heart disease.

PURPOSE: We aimed to describe the weight-for-age Z-score growth trajectory (WAZ-GT) of infants with complex congenital heart disease (cCHD) after neonatal cardiac surgery in the first 4 months of life and assess potential risk factors. METHODS: We utilized data from a previously reported trial of the REACH telehealth home monitoring (NCT01941667) program which evaluated 178 infants with cCHD from 2012 to 2017. Over the first 4 months of life, weekly infant weights were converted to WAZ. WAZ-GT classes were identified using latent class growth modeling. Multinomial logistic regression models were used to examine the associations between potential risk factors and WAZ-GT classes. RESULTS: Four distinct classes of WAZ-GT were identified: maintaining WAZ > 0, 14%; stable around WAZ = 0, 35%; partially recovered, 28%; never recovered, 23%. Compared with reference group "stable around WAZ=0," we identified clinical and sociodemographic determinants of class membership for the three remaining groups. "Maintaining WAZ > 0" had greater odds of having biventricular physiology, borderline appetite, and a parent with at least a college education. "Partially recovered" had greater odds of hospital length of stay>14 days and being a single child in the household. "Never recovered" had greater odds hospital length of stay >14 and > 30 days, tube feeding at discharge, and low appetite. CONCLUSIONS: This study described distinct classes of WAZ-GT for infants with cCHD early in infancy and identified associated determinants. PRACTICE IMPLICATIONS: Findings from this study can be used in the identification of infants at risk of poor WAZ-GT and in the design of interventions to target growth in this vulnerable patient population.

Quality of Life of Mothers of Infants Subjected to Neonatal Cardiac Surgery: The Importance of Psychosocial Factors.

Background: The World Health Organization acknowledges quality of life (QOL) as subjectively perceived overall well-being by the individual and recognizes it as an essential construct for overall health and wellness. The purpose of this study was to examine the association of infant, environmental, and parental factors with the QOL of mothers of infants at four months post-hospital discharge from cardiac surgery. Methods: Secondary analysis of prospectively collected data from the REACH randomized clinical trial of telehealth home monitoring. The sample included mothers (n = 148) of infants with congenital heart disease who provided data at four months post-discharge. Ten imputations were generated using fully conditional specification methods to address missing data and were combined. All analyses were performed on the imputed data. Mothers' QOL was the main outcome of the analysis, as measured by the Ulm Quality of Life Inventory for Parents. Predictors on QOL were identified based on the World Health Organization QOL framework which recognizes the multidimensional domains influencing QOL that include personal factors, environmental factors, and physical factors related to disease and functioning. Results: The treatment and control groups did not differ on any study variable, thus data were collapsed and analyzed together. Final multivariable model found that the combination of dyadic adjustment, social support, parenting stress, and post-traumatic stress symptoms explained approximately three-quarters of the variance in QOL scores. Conclusions: QOL for mothers of infants with congenital heart disease is largely influenced by psychosocial factors. Future research targeted toward improving maternal QOL should include psychosocial interventions that address social networks and stress.

The Associations of Psychologic and Physiologic Manifestations of Parental Stress in Critical Congenital Heart Disease.

Background: The primary objective of this exploratory, feasibility study was to examine the relationships of self-reported perceived stressors and psychological stress responses with measures of the biomarker cortisol in parents of infants hospitalized after neonatal cardiac surgery for critical congenital heart disease (cCHD). Methods: This was a prospective, cross-sectional study of 28 biological mother-father dyads of neonates with cCHD using consecutive enrollment. In the postoperative period after neonatal cardiac surgery, parents provided awakening and diurnal saliva samples and self-report measures on stress, anxiety, depression, dyadic adjustment, and perceived severity of illness of their neonate. Results: Evaluable data, including salivary cortisol samples, were obtained for 27 of the 28 dyads enrolled in the study. Compared to fathers, mothers exhibited significantly higher mean cortisol values at wakeup (p = .032), 30-minute post-wakeup (p = .024), and bedtime (p = .010) timepoints. Anxiety and depressive symptoms were both significant predictors of awakening cortisol measures. Depressive symptoms were also a predictor of diurnal cortisol (p < .05). Stress arising from infant appearance and behavior was found to significantly predict cortisol awakening response (p = .0403). Conclusions: Findings suggest that cortisol may be an important biomarker in the examination of parent stress in the pediatric cardiac intensive care unit (PCICU), serving as a foundation for future study in this area. Furthermore, we have provided preliminary evidence of feasibility of including saliva collection in studies of highly stressed parents in a challenging environment.

Predictors of Post-traumatic stress symptomology in parents of infants with Congenital Heart Disease post-surgery and after four months.

PURPOSE: To identify predictors of post-traumatic stress symptomology among parents of infants with complex congenital heart defects at hospital discharge and after 4 months. DESIGN & METHODS: A secondary analysis utilizing data from a larger RCT performed in three pediatric cardiac centers in North America. Analysis included 158 parent-infant dyads. Generalized Linear Modeling was used to identify predictors of parental post-traumatic symptomology at hospital discharge, and after 4 months. Considered predictors included demographics/SES, illness, and psychosocial parameters. RESULTS: At discharge, parenting stress, education, and infant's medication number were linked to post-traumatic stress symptomology severity; Parenting stress, education, insurance type, and medications number predicted number of symptoms; Tube-assisted feeding predicted PTSD. At 4 months, parenting stress, ethnicity, and number of ED visits predicted PTSS severity; Parenting stress, ethnicity, and cardiologist visits predicted number of symptoms; Parenting stress, single ventricle physiology, and number of children predicted PTSD. CONCLUSIONS & PRACTICAL IMPLICATIONS: Parental psychosocial factors, additionally to illness and sociodemographic indicators, can potentially risk parents to experience PTSS/PTSD. Nursing and other healthcare professionals can participate in early screening of such factors to determine familial risk. TRIAL REGISTRATION: NCT01941667.

Prevalence of ICU Delirium in Postoperative Pediatric Cardiac Surgery Patients.

OBJECTIVES: The objective of this study was to determine the prevalence of ICU delirium in children less than 18 years old that underwent cardiac surgery within the last 30 days. The secondary aim of the study was to identify risk factors associated with ICU delirium in postoperative pediatric cardiac surgical patients. DESIGN: A 1-day, multicenter point-prevalence study of delirium in pediatric postoperative cardiac surgery patients. SETTING: Twenty-seven pediatric cardiac and general critical care units caring for postoperative pediatric cardiac surgery patients in North America. PATIENTS: All children less than 18 years old hospitalized in the cardiac critical care units at 06:00 on a randomly selected, study day. INTERVENTIONS: Eligible children were screened for delirium using the Cornell Assessment of Pediatric Delirium by the study team in collaboration with the bedside nurse. MEASUREMENT AND MAIN RESULTS: Overall, 181 patients were enrolled and 40% (n = 73) screened positive for delirium. There were no statistically significant differences in patient demographic information, severity of defect or surgical procedure, past medical history, or postoperative day between patients screening positive or negative for delirium. Our bivariate analysis found those patients screening positive had a longer duration of mechanical ventilation (12.8 vs 5.1 d; p = 0.02); required more vasoactive support (55% vs 26%; p = 0.0009); and had a higher number of invasive catheters (4 vs 3 catheters; p = 0.001). Delirium-positive patients received more total opioid exposure (1.80 vs 0.36 mg/kg/d of morphine equivalents; p < 0.001), did not have an ambulation or physical therapy schedule (p = 0.02), had not been out of bed in the previous 24 hours (p < 0.0002), and parents were not at the bedside at time of data collection (p = 0.008). In the mixed-effects logistic regression analysis of modifiable risk factors, the following variables were associated with a positive delirium screen: 1) pain score, per point increase (odds ratio, 1.3; 1.06-1.60); 2) total opioid exposure, per mg/kg/d increase (odds ratio, 1.35; 1.06-1.73); 3) SBS less than 0 (odds ratio, 4.01; 1.21-13.27); 4) pain medication or sedative administered in the previous 4 hours (odds ratio, 3.49; 1.32-9.28); 5) no progressive physical therapy or ambulation schedule in their medical record (odds ratio, 4.40; 1.41-13.68); and 6) parents not at bedside at time of data collection (odds ratio, 2.31; 1.01-5.31). CONCLUSIONS: We found delirium to be a common problem after cardiac surgery with several important modifiable risk factors.

Standardized Feeding Approach Mitigates Weight Loss in Infants with Congenital Heart Disease.

OBJECTIVE: To evaluate the effect of a standardized feeding approach using a clinical nutrition pathway on weight-for-age Z score (WAZ) over hospital length of stay (HLOS) for infants with congenital heart disease (CHD). STUDY DESIGN: A 10-year retrospective cohort study examined eligible infants who underwent neonatal cardiac surgery between July 2009 and December 2018 (n = 987). Eligibility criteria included infants born at least 37 weeks of gestation and a minimum birth weight of 2 kg who underwent cardiac surgery for CHD within the first 30 days of life. Using the best linear unbiased predictions from a linear mixed effects model, WAZ change over HLOS was estimated before and after January 2013, when the standardized feeding approach was initiated. The best linear unbiased predictions model included adjustment for patient characteristics including sex, race, HLOS, and class of cardiac defect. RESULTS: The change in WAZ over HLOS was significantly higher from 2013 to 2018 than from 2009 to 2012 (ß = 0.16; SE = 0.02; P < .001), after controlling for sex, race, HLOS, and CHD category, indicating that infants experienced a decreased WAZ loss over HLOS after the standardized feeding approach was initiated. Additionally, differences were found in WAZ loss over HLOS between infants with single ventricle CHD (ß = 0.26; SE = 0.04; P < .001) and 2 ventricle CHD (ß = 0.04; SE = 0.02; P = .04). CONCLUSIONS: These data suggest that an organized, focused approach for nutrition therapy using a standardized pathway improves weight change outcomes before hospital discharge for infants with single and 2 ventricle CHD who require neonatal cardiac surgery.

Holding and Mobility of Pediatric Patients With Transthoracic Intracardiac Catheters.

BACKGROUND: Nursing care of pediatric patients after cardiac surgery consists of close hemodynamic monitoring, often through transthoracic intracardiac catheters, requiring patients to remain on bed rest and limiting holding and mobility. OBJECTIVES: The primary aim of this quality improvement project was to determine the feasibility of safely mobilizing pediatric patients with transthoracic intracardiac catheters out of bed. Once feasibility was established, the secondary aim was to increase the number of days such patients were out of bed. METHODS AND INTERVENTIONS: New standards and procedures were implemented in July 2015 for pediatric patients with transthoracic intracardiac catheters. After initiation of the new policies, complications were tracked prospectively. Nursing documentation of activity and positioning for all patients with transthoracic intracardiac catheters was extracted from electronic health records for 2 fiscal years before and 3 fiscal years after the new policies were implemented. The Cochran-Armitage test for trend was used to determine whether patterns of out-of-bed documentation changed over time. RESULTS: A total of 1358 patients (approximately 250 to 300 patients each fiscal year) had activity and positioning documented while transthoracic intracardiac catheters were in place. The Cochran-Armitage test for trend revealed that out-of-bed documentation significantly increased after the new policies and procedures were initiated (P < .001). No major complications were noted resulting from patient mobility with transthoracic intracardiac catheters. CONCLUSION: Pediatric patients with transthoracic intracardiac catheters can be safely held and mobilized out of bed.

Telehealth Home Monitoring and Postcardiac Surgery for Congenital Heart Disease.

OBJECTIVES: To test the effect of a 4-month telehealth home monitoring program (REACH), layered on usual care, on postdischarge outcomes in parents of infants recovering from cardiac surgery and their infants. METHODS: Randomized trial of infants discharged from the hospital after cardiac surgery for congenital heart disease. Consecutive infants with complex congenital heart disease undergoing cardiac surgery within 21 days of life were enrolled at 3 university-affiliated pediatric cardiac centers. RESULTS: From 2012 to 2016, 219 parent-infant dyads were enrolled; 109 were randomly assigned to the intervention group and 110 to the control group. At 4 months postdischarge, parenting stress was not significantly different between groups (total Parenting Stress Index in the intervention group was 220 and in the control group was 215; P = .61). The percentages of parents who met posttraumatic stress disorder (PTSD) criteria and parent quality of life inventory scores were also not significantly different between the 2 groups (PTSD in the intervention group was 18% and was 18% in the control group; P =.56; the mean Ulm Quality of Life Inventory for Parents in the intervention group was 71 andwas 70 in the control group; P = .88). Infant growth in both groups was suboptimal (the mean weight-for-age z scores were -1.1 in the intervention group and -1.2 in the control group; P = .56), and more infants in the intervention group were readmitted to the hospital (66% in the intervention group versus 57% in the control group; P < .001). CONCLUSIONS: When added to usual care, the REACH intervention was not associated with an improvement in parent or infant outcomes. Four months after neonatal heart surgery, ∼20% of parents demonstrate PTSD symptoms. Suboptimal infant growth and hospital readmissions were common.

Neurodevelopmental Outcomes Among Children With Congenital Heart Disease: At-Risk Populations and Modifiable Risk Factors.

As survivable outcomes among patients with complex congenital heart disease (cCHD) have continued to improve over the last several decades, more attention is being dedicated to interventions that impact not just survival but quality of life among patients with cCHD. In particular, patients with cCHD are at risk for impaired neurodevelopmental outcomes. In this review summarizing select presentations given at the 14th Annual Pediatric Cardiac Intensive Care Society's Annual Meeting in 2019, we discuss the neurodevelopmental phenotype of patients with cCHD, patients at greatest risk of impaired development, and three specific modifiable risk factors impacting development.

Nursing Practice With Transthoracic Intracardiac Catheters in Children: International Benchmarking Study.

BACKGROUND: Transthoracic intracardiac catheters are central catheters placed in the operating room at the conclusion of cardiac surgery for infants and children. Complications associated with these catheters (eg, bleeding, migration, premature removal, infection, leakage, and lack of function) have been described. However, no researchers have addressed the nursing management of these catheters in the intensive care unit, including catheter dressing and securement, mobilization of patients, and flushing the catheters, or the impact of these interventions on patients' outcomes. OBJECTIVES: To internationally benchmark current nursing practice associated with care of infants and children with transthoracic intracardiac catheters. METHODS: In a cross-sectional, descriptive study of nursing practice in infants and children with transthoracic intracardiac catheters, a convenience sample of bedside and advanced practice nurses was recruited to complete an online survey to benchmark current practice. The survey included questions on criteria for catheter insertion and removal, dressing care, flushing practice, securement, and mobilization of patients. RESULTS: Transthoracic intracardiac catheters are used by most centers that provide care for infants and children after open heart surgery. A wide range of practices was reported. CONCLUSIONS: Standardizing the use and care of transthoracic intracardiac catheters can improve the safety and efficacy of their use in infants and children and promote safe and early postoperative mobilization of patients.

Individualized Family-Centered Developmental Care: An Essential Model to Address the Unique Needs of Infants With Congenital Heart Disease.

BACKGROUND: Infants born with critical congenital heart disease (cCHD) who require surgical intervention in the newborn period are often hospitalized in a cardiac intensive care unit (CICU). Cardiac surgery and the CICU environment are traumatic to infants and their families. Infants are exposed to overwhelming stress, which can result in increased pain, physiologic instability, behavioral disorganization, disrupted attachment, and altered brain development. Individualized Family-centered Developmental Care (IFDC) is a model that can address the unique needs and developmental challenges of infants with cCHD. PURPOSE: The purpose of this article is to (1) clearly describe the uniqueness of the infant with cCHD, including the medical, neurological, and parental challenges, and (2) propose methods to apply IFDC to support recovery of infants with cCHD in the CICU. CONCLUSIONS: The experiences in the CICU shape the developing brain and alter recovery and healing, thus adversely impacting development. Individualized Family-centered Developmental Care is a promising model of care that nurses can integrate into the CICU to promote neuroprotection and development. Nurses can effectively integrate IFDC into the CICU by understanding the unique characteristics of infants with cCHD and applying IFDC interventions that include both maturity and recovery perspectives. CLINICAL IMPLICATIONS: The incorporation of IFDC interventions is essential for the infant with cCHD and should be a standard of care. Applying IFDC with a recovery perspective in all aspects of caregiving will provide opportunities for individualization of care and parent engagement, allowing infants in the CICU to recover from surgery while supporting both short- and long-term neurodevelopment.

Maternal Stress and Anxiety in the Pediatric Cardiac Intensive Care Unit.

BACKGROUND: Mothers whose infants are born with complex congenital heart disease (CCHD) experience stress during their infant's hospitalization in a pediatric cardiac intensive care unit (PCICU). OBJECTIVES: This study addressed 2 research questions: (1) What are the parental stressors for mothers whose infants with CCHD are in the PCICU? And (2) What are the relationships of trait anxiety and 3 parental stressors to the parental stress response of state anxiety in mothers whose infants with CCHD are in the PCICU? METHODS: This descriptive correlational study included 62 biological mothers of infants admitted to a PCICU within 1 month of birth who had undergone cardiac surgery for CCHD. Maternal and infant demographics and responses to the Parental Stressor Scale: Infant Hospitalization and the State-Trait Anxiety Inventory were collected at 3 major PCICUs across the United States. RESULTS: Mothers' scores revealed that infant appearance and behavior was the greatest stressor, followed by parental role alteration, then sights and sounds. The combination of trait anxiety and parental role alteration explained 26% of the variance in maternal state anxiety. Mothers with other children at home had significantly higher state anxiety than did mothers with only the hospitalized infant. CONCLUSIONS: Results from this study revealed factors that contribute to the stress of mothers whose infants are born with CCHD and are hospitalized in a PCICU. Nurses are in a critical position to provide education and influence care to reduce maternal stressors in the PCICU, enhance mothers' parental role, and mitigate maternal state anxiety.

Developmental Care Rounds: An Interdisciplinary Approach to Support Developmentally Appropriate Care of Infants Born with Complex Congenital Heart Disease.

Newborn infants with complex congenital heart disease are at risk for developmental delay. Developmental care practices benefit prematurely born infants in neonatal intensive care units. Cardiac intensive care units until recently had not integrated developmental care practices into their care framework. Interdisciplinary developmental care rounds in our center have helped in the promotion of developmentally supportive care for infants before and after cardiac surgery. This article discusses basic principles of developmental care, the role of each member of the interdisciplinary team on rounds, common developmental care practices integrated into care from rounds, and impacts to patients, families, and staff.

A developmental care framework for a cardiac intensive care unit: a paradigm shift.

Within the past several decades, medical and surgical advancements have dramatically decreased mortality rates in neonates and infants with congenital heart disease. Although patients are surviving in greater numbers, little research is reported on issues related to newborn care for these at-risk infants. A developmental care model was introduced to the nursing staff at the Children's Hospital of Philadelphia, which included 5 core measures to support evidence-based developmental care practices: (1) sleep, pain, and stress assessment; (2) management of daily living; (3) positioning, feeding, and skin care; (4) family-centered care; and (5) a healing environment. The care practices were adapted to the specific issues of the late preterm and full-term infant who has experienced neonatal cardiac surgery. The purpose of this article is to review the process of implementing a development model of care in a cardiac intensive care unit.