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Background: Adverse neurodevelopment is a common comorbidity associated with congenital heart disease (CHD). The consequences of adverse neurodevelopment are seen across the life course. The cause of adverse neurodevelopment is multifactorial, and use of a life course perspective can assist with understanding and enhancing neurodevelopment in individualswith CHD. Purpose: The purposes of this article are to (1) apply the Life Course Health Development framework to neurodevelopment in the population with CHD and (2) discuss how exposure to the pediatric cardiac intensive care unit (PCICU) environment during infancy is a point of intervention for improving neurodevelopmental outcomes. Conclusion: Individuals with CHD are at an increased risk for adverse neurodevelopment across the life course. The PCICU environment is a point of intervention for improving neurodevelopmental outcomes. Stress can lead to changes in brain structure and function that are associated with negative outcomes in terms of outward behavioral and functional capacity, and the PCICU environment is a source of stressful stimuli. Infancy is a period of rapid brain growth, and the brain ismore susceptible to stress during this period of the life course, putting infants receiving care in the PCICU at an increased risk of adverse neurodevelopment. Clinical Implications: Interventions to support optimal neurodevelopment should focus on the PCICU environment during infancy. Developmentally supportive caremodels should be explored as a means of modifying the PCICU environment. In addition, more research is needed on the relationship between the PCICU and neurodevelopment. The conceptual model introduced can serve as a starting point for this research. [ABSTRACT FROM AUTHOR]

Background and Purpose: Parents' competencies in coparenting are critical to adaptive and competent caregiving of an infant with complex congenital heart disease. To date, feasible interventions to support parents in working together—coparenting—for caregiving of these infants have not been developed and systematically examined. The purpose of this feasibility study was to examine the efficacy of the participatory teaching/learning intervention, Guided Participation (GP) on parent dyads' competencies in interactive problem-solving tasks in preparation for a randomized controlled trial. Methods: Nurse guides used GP to support mother and father couples in developing coparenting competencies through the first 6 months after birth. Couples, enrolled from two regional heart centers, were randomly assigned either to the usual care group (n = 10) or the GP group (n = 24). Intervention involved nurse guided GP in hospital and, following the infant's discharge, monthly telephone GP sessions between 2-months and 6-months infant age. In-home data collection visits at 2 and 6 months included video-recorded parent interaction problem-solving tasks with two goals, infant caregiving and the parent couple's relationship. The Iowa Family Interaction Rating Scales were used to score observed interactive competencies. Results: Retention was 82%, and results revealed small to moderate effect sizes for GP on problem-solving constructs for mothers and for the parent couple dyad. Implications for Practice: Our findings support further study in a fully powered randomized trial with a more diverse sample, handbook-enhanced GP, and examination of the effect on a broader spectrum of outcomes, including infant growth and development. [ABSTRACT FROM AUTHOR]

Background and Purpose: The prenatal preparing women do for infant caregiving is understudied. In this pilot, multimethods study, we examined motivation for preparing for infant caregiving of women in their third trimester of pregnancy expecting either a healthy infant or an infant with complex congenital heart disease (CCHD). Methods: Eleven women expecting a healthy infant and four expecting an infant with CCHD completed a questionnaire and were interviewed. Preparing was reported in context of expectations, intentions, and goals and in personal, family, and infant conditions. Motivation for preparing was expressed through an interview about caregiving issues women were working on. Intensity of motivation was estimated by self-report of the time infant caregiving issues were in thought or action. Effect sizes were calculated for between group differences in motivation intensity. Interview data were examined with directed content analysis. Results: Intensity of motivation was higher for women expecting an infant with CCHD for issues of Knowing What and How to prepare. Women expecting an infant with CCHD reported uncertainty about how they would feed their babies given their health condition. Interviews yielded new motivations encompassing issues of family and working with the parent partner. Implications: Assessment of issues women are working on prenatally, indicating motivations for preparing for infant caregiving, and of the intensity of motivations advances culturally-attuned and family-centered preparation. Knowledge of these issues and motivation intensity could orient clinical care to supporting women in developing well-informed expectations, intentions, and goals culturally suited to postnatal learning and infant needs. [ABSTRACT FROM AUTHOR]

• Half of CHD patients are affected by overweight/obesity, including one-third of youth. • The prevalence of obesity increases across the lifespan of CHD; the prevalence of obesity is greatest among patients with moderate lesions. • Obesity is associated with elevated blood pressure across the lifespan. Congenital heart disease (CHD) survivors are at risk for cardiovascular comorbidities exacerbated by obesity. Determine relationships between overweight/obesity and medical factors across the lifespan of CHD. Lesion severity, weight, blood pressure, cardiac and other comorbidities, and cardiac medications were abstracted from the medical records of 3790 CHD patients, aged ≥6 years, who attended CHD care in the Midwestern U.S. The proportion of patients with overweight/obesity increased across the lifespan, with 73% of adults affected by overweight/obesity. Obesity was more prevalent among patients with moderate lesions (29%). Overweight/obesity was associated with elevated blood pressure across age and lesion severity. Young adults with obesity and simple or moderate lesions had more comorbidities (simple: IRR = 3.1, moderate: IRR = 2.3) and cardiac medications (simple: IRR = 2.2, moderate: IRR = 1.7). Obesity and its cardiovascular correlates are present across the lifespan for CHD survivors, highlighting the need for early prevention and intervention. [ABSTRACT FROM AUTHOR]

Background: Developmental delay is a significant concern for infants born with complex congenital heart disease (CCHD). Environmental exposures (e.g., excessive light and sound exposure, sleep disruption) in neonatal intensive care are associated with poor developmental outcomes. However, the environmental experience of newborn infants in cardiac care is unknown. Objectives: The aim of the study was to examine the feasibility of continuous environmental data collection (i.e., light and sound exposure, sleep pattern) in pediatric cardiac care units and describe the environmental experience of three hospitalized infants with CCHD. Methods: A case series of three infants undergoing cardiac surgery for CCHD within the first month of life was performed. Measures of light, sound, and sleep were collected in 24-hour periods on three to four separate hospital days. For each day, light and sound meters were attached to the hospital bed, and an actigraphy band was placed on the infant's lower leg to measure sleep/wake states. Feasibility of continuous environmental data collection was assessed through acceptability of data collection for families and clinical staff, usability of data collection equipment for research staff, and study protocol adherence. Descriptive statistics were used to calculate the count and duration of episodes of excessive light and sound exposure, hourly levels of light and sound exposure, total sleep time, duration of individual sleep episodes, and number of arousals from sleep. Results: Although continuous environmental data collection was generally acceptable to families and clinical staff, multiple usability issues were identified by research staff, and study protocol adherence was variable. Missing data were a major limitation. User error during equipment setup was a main contributor to missing data. Infants experienced frequent episodes of sound exposure above recommended maximum levels, whereas light exposure generally remained below recommended maximum levels. Infant sleep patterns were highly fragmented, with frequent arousals and short duration of individual sleep episodes. Discussion: Lessons learned during preliminary data collection with the infants in this case series will inform methods and prevent missing data in future, large-scale studies of this vulnerable, hard-to-recruit population. Data reflect a cardiac care environment characterized by excessive sound exposure and highly disrupted sleep. These environmental stressors may affect developmental outcomes in infants with CCHD. [ABSTRACT FROM AUTHOR]

Background: Pain management is an essential component of care for pediatric patients following surgery. Massage reduces self-reported postoperative pain in adults with heart disease but has received little attention in postoperative pediatric patients with complex congenital heart disease (CCHD). Objectives: The aim of the study was to evaluate the effectiveness of massage compared to a rest period on postoperative pain scores and physiological responses in infants with CCHD. Methods: We used a two-group randomized clinical trial design with a sample of 60 infants with CCHD between 1 day and 12 months of age following their first cardiothoracic surgery. Both groups received standard postoperative care. Group 1 received a daily 30-minute restriction of nonessential caregiving (quiet time), and Group 2 received a daily 30-minute massage. Interventions continued for seven consecutive days. Pain was measured six times daily using the Face, Legs, Activity, Cry, Consolability Pain Assessment Tool (FLACC). Average daily doses of analgesics were recorded. Heart rates (HRs), respiratory rates (RRs), and oxygen saturations (SpO2) were recorded continuously. Daily averages, pre- and postintervention FLACC scores, and physiological responses were analyzed using descriptive statistics, generalized linear mixed models repeated measures, latent growth models, and/or regression discontinuity analysis. Fentanyl-equivalent narcotic values were used as a time-varying covariate. Results: Adjusted pain scores were lower for the massage group on all days except Day 7. Overall, there were no group effects on level of pain or differential rate of change in pain. However, the massage group had lower daily pain scores with small to medium effect size differences, largest at Days 4, 5, and 6, and lower average daily HR and RR. There was little difference between groups in SpO2. Infants demonstrated immediate effects of massage, with HR and RR decreasing and oxygen saturations increasing. Discussion: This study provides beginning evidence that postoperative massage may reduce pain and improve physiological parameters in infants with congenital heart disease. This nonpharmacological adjunct to pain management may provide a particular benefit for this population by reducing demand on the cardiorespiratory system. [ABSTRACT FROM AUTHOR]

Purpose: Describe collaborative caregiving of the parents of an infant with congenital heart disease (CHD) with partner, health‐care clinicians, and substitute caregivers (SC). Design and Methods: In a national online survey, 53 mothers and 12 fathers described collaborative caregiving for infants after CHD intervention with respect to facets of Bowlby's concept of the internal working model of caregiving. Parents identified concern for 24 everyday common problems or goals (i.e., issues; 10 for partner, 9 for clinician, 5 for SC), rated issue importance and difficulty, indicated an intention for seeking and using help (help use), and identified help source. Results: All survey items were a concern to at least 11 parents. Most prominently, all five of the SC items were identified by at least 44% of the parents as a concern. Everyday, common problems and goals were generally reported to be more important than difficult. Two items identified as partner issues, "Talking about life change" and "Handling stress," were a concern for about 50% of parents and identified by at least 74% as very important and 72% as moderately to greatly difficult. Help use was highest for SC items followed by items related to the partner. The partner was most frequently identified as a help source. Practice Implications: Nurses are in a position to assess and support parent collaboration within partner, clinician, and SC relationships for everyday problems and goals. The survey questions, with further development and testing, could be used for clinician assessment and tailoring of intervention to support parents' collaborative caregiving for infants with CHD. [ABSTRACT FROM AUTHOR]

Worldwide, more than 400,000 infants are born each year with complex congenital heart disease (CCHD) requiring surgical intervention within the first months of life. Although improvements in perioperative care have resulted in increased rates of survival, more than half of infants with CCHD have neurodevelopmental impairments affecting subsequent educational achievements, job opportunities, and mental health. Brain maturity and impaired outcomes in infants with CCHD are similar to those of prematurely born infants. Developmentally supportive care, including foundational application of kangaroo care (KC), improves neurodevelopment in premature infants. Provision of developmentally supportive care with KC during the early hospitalization of infants with CCHD has the potential to similarly improve neurodevelopment. The purposes of the article are to describe common congenital heart defects, describe developmentally supportive care with an emphasis on KC, and to offer specific recommendations for KC and research in infants with CCHD. [ABSTRACT FROM AUTHOR]

Background: Infants with complex congenital heart disease (CCHD) often develop neurodevelopmental disabilities. Cognitive abilities are associated with vagally mediated autonomic function. Skin-to-skin contact (SSC) interventions enhance infant neurodevelopment and autonomic function in other high-risk populations. Aim: To examine the effects of a neonatal SSC intervention on learning and autonomic function in 3-month-old infants: infants with CCHD who received neonatal SSC (n = 10), typically developing (TD) infants (n = 16), and infants with CCHD without SSC (n = 10). Methods: This secondary data analysis measured cognitive function using the mobile paradigm (MP), a classic measure of learning based on operant conditioning. Autonomic function was assessed with heart rate (HR) and HR variability (HRV). Data were analyzed with repeated-measures general linear mixed modeling with α =.10 for this exploratory study. Results: Learning rates were TD = 75%, cardiac-SSC = 70%, and cardiac-control = 40%. Learners demonstrated significant reductions in HRV during the MP; nonlearners exhibited no change. TD and cardiac-SSC groups exhibited increases in HR and reductions in HRV during the MP. No significant changes occurred in the cardiac-control group. Nonlinear HRV during the MP differed only in the TD group. Conclusions: Findings suggest improvements in cognitive and autonomic development in 3-month-old infants with CCHD who received neonatal SSC. Learning and autonomic function results in infants with CCHD who had not received SSC suggest reduced capacity to muster the physiologic resources to carry out this cognitive task. Findings provide preliminary evidence in support of implementation of SSC with infants with CCHD and support additional research. [ABSTRACT FROM AUTHOR]

Background: Congenital heart disease (CHD) survivors have an elevated risk for obesity-related comorbidities, but little is known about racial differences in obesity rates for this population. Objective: The authors aimed to compare rates of obesity in CHD survivors to national estimates using National Health and Nutrition Examination Assessment Survey (NHANES) and to characterize racial disparities in obesity among CHD survivors across age ranges. Methods: Retrospective chart review included 4496 CHD survivors (4050 white and 446 black) with a range of lesion severities from a pediatric and an adult medical center. Results: White children with CHD had a higher prevalence of obesity compared with NHANES estimates. In contrast, white young adults with CHD had a lower prevalence of obesity compared with NHANES. Blacks with CHD had a 58% increased risk of obesity in young adulthood and a 33% increased risk in late adulthood compared with whites with CHD. Conclusions: Obesity interventions are needed among CHD survivors across the lifespan, particularly among adult non-Hispanic blacks. [ABSTRACT FROM AUTHOR]

This study described co-parenting motivations and quality of co-parenting features for parents of infants with complex congenital heart disease (CCHD), including differences over time by illness severity. Existing transcripts of parenting experience at infant age 1 and 12 months for 23 parent couples were analyzed using directed content analysis. Data were quantitized for additional description. Six co-parenting motivations and five co-parenting features were identified. Two co-parenting motivations had not been previously described: Developing the Co-Parenting Relationship and Maintaining the Couple Relationship. Variability in quality of co-parenting features was evident. However, the majority of parents showed high ratings. Motivations and quality of co-parenting features changed over time and were related to illness severity. Our findings increase the understanding of what parents are working on as a couple to parent an infant with CCHD and the quality of this co-parenting. Several questions for further study are presented. [ABSTRACT FROM AUTHOR]

Background: Infants with complex congenital heart disease (CCHD) demonstrate impaired autonomic nervous system (ANS) regulation, which may contribute to commonly observed impairments in feeding, growth, and development. Close mother-infant physical contact improves ANS function in other high-risk infant populations. Objective: Our purposes were to examine feasibility of a 2-week daily skin-to-skin contact (SSC) intervention and to describe change in ANS function in response to the intervention. Methods: Feasibility was assessed by recruitment and retention rates, safety, and acceptability. Autonomic nervous system function was measured with linear and nonlinear measures of heart rate variability (HRV) during a feeding before the 14-day SSC intervention and 3 times during a 4-week follow-up. Results: Recruitment rate was 72%; retention rate was 55.5%. Mothers were universally positive about SSC. Ten mothers and infants completed a daily mean of 77.05 minutes of SSC during the 14-day intervention with no adverse events. Baseline high-frequency HRV, reactivity to challenge, and recovery after challenge improved during the 6-week study. Nonlinear measures demonstrated abnormally high sympathetic activity, especially after feeding, in most infants. Conclusions: Skin-to-skin contact is feasible in infants with CCHD. Linear measures of HRV suggested improvements in ANS function with this intervention. This article is one of the first to describe nonlinear HRV measures in infants with CCHD. Additional research is needed to identify variations in linear and nonlinear effects based on specific cardiac conditions and with varying intervention doses and timing. This low-cost, low-risk intervention has the potential to improve outcomes in infants with CCHD. [ABSTRACT FROM AUTHOR]

Background: Infants with complex congenital heart disease are at high risk for developmental delays. Although the etiology of these delays is multifactorial, the physical environment may be a contributory factor. Extensive studies have been conducted in neonatal intensive care units measuring environmental influences on development, resulting in policy and practice changes. Cardiothoracic intensive care units and cardiac step-down units are new environments in which newborns with heart disease receive care. No environmental studies have been conducted in units caring for newborn infants recovering from cardiac surgery. Objective: The aim of this study is to examine the environmental experience of a newborn infant with heart disease after surgical intervention within the first month of life. Methods: Measurements of illumination, sound levels, and sleep were recorded on 1 infant for 2 consecutive postoperative days in the cardiothoracic intensive care unit and 2 consecutive days in the step-down unit. Results: Although average daily noise exposure remained below recommended guidelines on 3 of 4 days, the infant experienced intermittent periods of excessive noise (Q55 dBA) during 59 of 87 hours and 110 episodes of acute noise events greater than 70 dBA. Average daily light exposure was below the recommended guidelines. However, light levels were more than twice the recommended levels at multiple points daily. For each of the 4 observation days, the infant experienced 66 to 102 awakenings during sleep, and sleep durations were less than 30 minutes 90% of the time. Conclusions: This study provides the first report of potential environmental stressors in newborn infants cared for in cardiac specialty units. Excessive levels of light and noise as well as frequent interruptions for medical and nursing care may contribute to disorganized sleep and increased patient distress and may impact subsequent neurodevelopment. Studies are needed to identify potentially adverse aspects of the intensive caregiving environment for newborn infants who have undergone cardiac surgery. [ABSTRACT FROM AUTHOR]

Background: Infants with complex congenital heart disease requiring surgical intervention within the first days or weeks of life may be the most seriously ill infants needing intensive nursing and medical care. Skin-to-skin contact (SSC) is well accepted and practiced as a positive therapeutic intervention in premature infants but is not routinely offered to infants in cardiac intensive care units. The physiologic effects of SSC in the congenital heart disease population must be examined before recommending incorporation of SSC into standard care routines. Objective: The purpose of this case study was to describe the physiologic response to a single session of SSC in an 18-day-old infant with hypoplastic left heart syndrome. Methods: Repeated measures of heart rate, respiratory rate, oxygen saturation, blood pressure, and temperature were recorded 30 minutes before SSC, during SSC (including interruptions for bottle and breast feedings), and 10 minutes after SSC was completed. Results: All physiologic parameters were clinically acceptable throughout the 135-minute observation. Conclusion: This case study provides beginning evidence that SSC is safe in full-term infants after surgery for complex congenital heart disease. Further research with a larger sample is needed to examine the effects of SSC on infant physiology before surgery and earlier in the postoperative time period as well as on additional outcomes such as length of stay, maternal-infant interaction, and neurodevelopment. [ABSTRACT FROM AUTHOR]

The purpose of this study was to examine learning, short-term memory and general development including cognitive, motor, and language domains in infants with Complex Congenital Heart Defects (CCDH). Ten infants with CCHD (4 males, 6 females) and 14 infants with typical development (TD) were examined at 3 months of age. The mobile paradigm, where an infant's leg is tethered to an overhead mobile, was used to evaluate learning and short-term memory. The Bayley Scales of Infant Development 3rd edition (Bayley-III) was used to evaluate general development in cognitive, motor, and language domains. Infants with CCHD and infants with TD both showed learning with significant increase in kicking rate ( p < 0.001) across periods of the mobile paradigm, but only infants with TD demonstrated short-term memory ( p = 0.017) in the mobile paradigm. There were no differences on cognitive, motor, and language development between infants with CCHD and infants with TD on the Bayley-III. Early assessment is necessary to guide targeted treatment in infants with CCHD. One-time assessment may fail to detect potential cognitive impairments during early infancy in infants with CCHD. Supportive intervention programs for infants with CCHD that focuses on enhancing short-term memory are recommended. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: Explore relationships among autonomic nervous system (ANS) function, child behavior, and maternal sensitivity in three-year-old children with surgically corrected transposition of the great arteries (TGA) and in children healthy at birth. Background: Children surviving complex congenital heart defects are at risk for behavior problems. ANS function is associated with behavior and with maternal sensitivity. Method: Child ANS function (heart rate variability) and maternal sensitivity (Parent–Child Early Relational Assessment) were measured during a challenging task. Mother completed the Child Behavior Checklist. Data were analyzed descriptively and graphically. Results: Children with TGA had less responsive autonomic function and more behavior problems than healthy children. Autonomic function improved with more maternal sensitivity. Conclusion: Alterations in ANS function may continue years after surgical correction in children with TGA, potentially impacting behavioral regulation. Maternal sensitivity may be associated with ANS function in this population. Continued research on relationships among ANS function, child behavior, and maternal sensitivity is warranted. [Copyright &y& Elsevier]

An introduction is presented in which the guest editors discuss the theme of the issue, understanding and intervening to improve outcomes of infants and children born with chronic, complex health conditions.

Background: Infants with complex congenital heart defects (CCHDs) experience alterations in growth that develop following surgical intervention and persist throughout early infancy, but the roles of nutritional intake and method of feeding require further exploration as their roles are not fully explained. Objectives: The purpose of this study was to characterize trends in growth and nutritional intake during the first 6 months of life in infants with CCHD. Methods: We conducted a secondary analysis of growth and nutritional data from a pilot study designed to test the feasibility of nurse-guided participatory intervention with parents of infants with CCHD. Measures included demographic data, anthropometric data at birth, hospital discharge, and 6 months of age, nutritional intake at 2 and 6 months of age from parent-completed 24-hour nutrition diaries, and assessment of oral-motor skills between 1 and 2 months of age. Descriptive statistics and correlation and group differences were examined. Results: Data for 28 infants were analyzed. Infants demonstrated a decrease in weight-for-age z score (WAZ) and length-for-age z score (LAZ) from birth to hospital discharge and an increase in WAZ and LAZ by 6 months of age. Many of the infants developed failure to thrive. Across the study period, one third of the infants were receiving enteral nutrition. Infants who were orally fed had better growth WAZ and LAZ at 6 months of age when compared to infants who were enterally fed. Discussion: Infants with CCHD exhibit growth faltering throughout early infancy. Reliance on enteral nutrition did not improve growth outcomes in these infants. Findings suggest nutritional intake may not be enough to meet the nutrient requirements to stimulate catch-up growth. [ABSTRACT FROM AUTHOR]

Date Presented 3/30/2017 The objectives of this study were to characterize the feeding skills of infants with complex congenital heart disease and to measure physiological parameters during feeding. Results suggest clinical signs of decreased feeding skill and physiological changes that remain up to 60 min after the feeding. Primary Author and Speaker: Kelly Tanner Additional Authors and Speakers: Lauren Justice Contributing Authors: Tondi Harrison, Maria Anderson, Brian F. Joy [ABSTRACT FROM AUTHOR]