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.

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.

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.

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.

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.

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.

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.

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.

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.

Intervention Codesign in the Pediatric Cardiac Intensive Care Unit to Improve Family Meetings.

CONTEXT: Family meetings are encouraged in the pediatric cardiac intensive care unit (CICU) with the expectation of supporting parental shared decision-making (SDM). However, they often fall short of this goal. Additionally, interprofessional team and family meetings are dominated by input from physicians, under-utilizing the skillset of the full clinical team. OBJECTIVES: 1) To determine feasibility of a codesign process to optimize the preparation of the interprofessional team and parents for conducting SDM-oriented family meetings in the CICU, and 2) to describe the resulting elements of the intervention including new support documents for the team and family to prepare for the meeting, team member roles in the meeting, and optimization of communication skills. METHODS: Experience-based codesign was used with CICU clinicians and parents of children hospitalized in the CICU to develop an intervention at a single institution. Sessions were audio recorded and transcribed and analyzed using modified grounded theory. Participants were surveyed about their engagement in the codesign process to assess feasibility. RESULTS: Fifteen professionals and six parents enrolled in the codesign and endorsed engagement in the process and importance of the intervention elements. Participants identified the benefit of complementary parent and team preparation for family meetings noting five distinct types of meetings that occurred frequently. Documents, processes, and skills training were developed to improve interprofessional teamwork regarding shared decision making and support of parents in family meetings. CONCLUSION: A codesign of an intervention with clinicians and parents in the CICU is a feasible and resulted in an intervention with broad support among clinicians in the CICU.

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.

Individualized Family-Centered Developmental Care for Infants With Congenital Heart Disease in the Intensive Care Unit.

BACKGROUND: Individualized family-centered developmental care (IFDC) is considered the standard of care for premature/medically fragile newborns and their families in intensive care units (ICUs). Such care for infants with congenital heart disease (CHD) varies. OBJECTIVE: The Consortium for Congenital Cardiac Care- Measurement of Nursing Practice (C4-MNP) was surveyed to determine the state of IFDC for infants younger than 6 months with CHD in ICUs. METHODS: An electronic survey was disseminated to 1 nurse at each participating center. The survey included questions on IFDC-related nursing practice, organized in 4 sections: demographics, nursing practice, interdisciplinary practice, and parent support. Data were summarized by using descriptive statistics. Differences in IFDC practices and IFDC-related education were assessed, and practices were compared across 3 clinical scenarios of varying infant acuity by using the χ2 test. RESULTS: The response rate was 66% (25 centers). Most respondents (72%) did not have IFDC guidelines; 63% incorporated IFDC interventions and 67% documented IFDC practices. Only 29% reported that their ICU had a neurodevelopmental team. Significant differences were reported across the 3 clinical scenarios for 11 of 14 IFDC practices. Skin-to-skin holding was provided least often across all levels of acuity. Nurse education related to IFDC was associated with more use of IFDC (P < .05). CONCLUSION: Practices related to IFDC vary among ICUs. Opportunities exist to develop IFDC guidelines for infants with CHD to inform clinical practice and nurse education. Next steps include convening a C4-MNP group to develop guidelines and implement IFDC initiatives for collaborative evaluation.

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.

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.

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.

Parent mental health and family functioning following diagnosis of CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative.

Diagnosis of CHD substantially affects parent mental health and family functioning, thereby influencing child neurodevelopmental and psychosocial outcomes. Recognition of the need to proactively support parent mental health and family functioning following cardiac diagnosis to promote psychosocial adaptation has increased substantially over recent years. However, significant gaps in knowledge remain and families continue to report critical unmet psychosocial needs. The Parent Mental Health and Family Functioning Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute to identify significant knowledge gaps related to parent mental health and family functioning, as well as critical questions that must be answered to further knowledge, policy, care, and outcomes. Conceptually driven investigations are needed to identify parent mental health and family functioning factors with the strongest influence on child outcomes, to obtain a deeper understanding of the biomarkers associated with these factors, and to better understand how parent mental health and family functioning influence child outcomes over time. Investigations are also needed to develop, test, and implement sustainable models of mental health screening and assessment, as well as effective interventions to optimise parent mental health and family functioning to promote psychosocial adaptation. The critical questions and investigations outlined in this paper provide a roadmap for future research to close gaps in knowledge, improve care, and promote positive outcomes for families of children with CHD.

Assessment of an Educational Tool for Pediatric Cardiac Nurses on Individualized Family-Centered Developmental Care.

BACKGROUND: Prevention of neurodevelopmental sequelae is a high priority in the care of infants with congenital heart defects. Individualized family-centered developmental care has been identified as a promising approach to promote infant neurodevelopment during hospitalization. OBJECTIVE: To educate nurses on the concept of individualized family-centered developmental care and its application to nursing practice and to reduce perceived barriers to its implementation. METHODS: Two evidence-based visual educational tools called "developmental care flowers" were created and implemented in the inpatient and procedural units of a cardiac center. Each flower petal represented a core component of individualized family-centered developmental care: cue-based care, patient positioning, supportive environment, and parent engagement. Surveys were administered before and after the educational intervention to assess changes in nurses' knowledge and perceptions of individualized family-centered developmental care. RESULTS: Nurses reported that the developmental care flowers improved their understanding of individualized family-centered developmental care. The educational tools reduced some perceived barriers to implementation of this care model and increased nurse-reported inclusion of parents in care. Qualitative feedback from staff members regarding the tools was positive and acknowledged that individualized family-centered developmental care should be an ongoing priority. CONCLUSIONS: The inpatient and procedural developmental care flowers are useful tools for educating nurses about individualized family-centered developmental care. They could be revised into more interactive tools that might be used to educate parents and further support the integration of this care concept into nursing practice.

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.