Cheryl L. Brosig

Infant end-of-life care: the parents' perspective

Objective:The purpose of this study was to identify factors important to parents in their infants end-of-life care.Study Design:Participants were parents (n=19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infants end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS).Results:Parents scored significantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identified the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers.Conclusions:Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families.

Risk and Prevalence of Developmental Delay in Young Children With Congenital Heart Disease

BACKGROUND AND OBJECTIVE: Children with congenital heart disease (CHD) are at risk for developmental delay (DD). Changes in cognitive, language, and motor skills in early childhood have not been described. We report the results of a structured approach using longitudinal testing to identify problems and ensure early intervention in accordance with published guidelines. METHODS: Bayley Scales of Infant Development, Third Edition, were used to assess cognitive, language, and motor skills in 99 children with CHD. Subjects were evaluated 3 to 6 times in the first 3 years of life. DD was defined as scores >1 SD below the population mean. RESULTS: Cardiac anatomy was single ventricle (1V) in 34 subjects and 2 ventricles (2V) in 65. Medical comorbidities were present in 21% and genetic syndromes in 19%. Most subjects (75%) had DD in ≥1 area at ≥1 assessments. Subjects with 1V anatomy had equivalent outcomes to those with 2V. Cognitive and language scores declined in subjects with genetic syndromes but were stable and within the average range for subjects with 1V and 2V. Motor scores improved for subjects with 1V and 2V but remained low for those with genetic syndromes. In addition to age, need for supplemental tube feeding, longer cardiopulmonary bypass time, and shorter time since last hospitalization were significant predictors of developmental outcomes. CONCLUSIONS: DDs in young children with CHD are both common and dynamic. Providers should encourage longitudinal surveillance for children with CHD because exposure to risk and prevalence of DD change over time.

Psychological distress in parents of children with severe congenital heart disease : the impact of prenatal versus postnatal diagnosis

Objective:The purpose of the study was to evaluate coping and psychological functioning of parents of children prenatally or postnatally diagnosed with congenital heart disease.Study Design:Parents of 10 infants prenatally diagnosed by fetal echocardiogram and 7 infants postnatally diagnosed with severe congenital heart disease completed the Brief Symptom Inventory (BSI) at the time of diagnosis, at the time of birth and 6 months after birth. Prenatal and postnatal groups were compared to each other and to BSI norms.Result:Although both groups scored higher than test norms at the time of diagnosis, they did not differ significantly from each other. Six months after birth, the postnatal group scores did not differ from test norms, but the prenatal group scores were still significantly higher than test norms. The severity of the childs heart lesion at diagnosis was related to parental distress levels; parents with children with more severe lesions had higher BSI scores.Conclusion:Results suggest the need to provide parents with psychological support, regardless of the timing of diagnosis. Parents of children with more severe lesions may be at risk for higher levels of psychological distress, particularly over time.

Practicing psychologists' interpretations of and compliance with child abuse reporting laws.

Despite mandatory reporting laws, several studies have found that 30%–40% of professional psychologists have elected not to report suspected child abuse at some time. In this study, we surveyed 226 licensed psychologists from two states concerning factors related to reporting suspected abuse. Thirty-two percent of participants indicated having not reported suspected abuse. Comparisons between participants who have consistently and inconsistently reported indicated that psychologists who have consistently reported rated legal factors as more important than those who have inconsistently reported. Additionally, clinicians who have inconsistently reported were more likely to indicate evidence of abuse as being important in reporting, and less likely to report subjective suspicions of abuse. Results show that a number of factors influence reporting decisions. Implications for public policy and professional training are discussed.

Use of a HeartWare Ventricular Assist Device in a Patient With Failed Fontan Circulation

We present a successful case of the use of a HeartWare ventricular assist device as a bridge to transplantation in an 11-year-old with a hypoplastic left heart and failed Fontan circulation.

Risk Factors for Abnormal Developmental Trajectories in Young Children With Congenital Heart Disease

Background— Children with congenital heart disease are at risk for developmental delay. This study sought to identify early risk factors for abnormal developmental trajectories in children with congenital heart disease. Methods and Results— Children with congenital heart disease at high risk for developmental delay, without known genetic abnormality, and with ≥3 assessments by the use of the Bayley Scales of Infant and Toddler Development, Third Edition, were studied. Logistic regression was used to assess the impact of patient and clinical factors on cognitive, language, and motor score trajectories; classified as: average or improved if all scores were ≥85 (<1 standard deviation below the mean) or increased to ≥85 and never decreased; or abnormal if all scores were <85, fell to <85 and never improved, or fluctuated above and below 85. Data on 131 children with 527 Bayley Scales of Infant and Toddler Development, Third Edition assessments were analyzed. Subject age was 5.5 to 37.4 months. Overall, 56% had cognitive, language, and motor development in the average range. Delays occurred in single domains in 23%. Multiple domains were delayed in 21%. More cardiac surgeries, longer hospital stay, poorer linear growth, and tube feeding were associated with worse outcomes in all domains (P<0.05). In the multivariable model, the need for tube feeding was a risk factor for having an abnormal developmental trajectory (odds ratio, 5.1–7.9). Minority race and lack of private insurance had significant relationships with individual domains. Conclusions— Longitudinal developmental surveillance identified early factors that can help quantify the risk of developmental delay over time. Strategies to improve modifiable factors and early therapeutic intervention can be targeted to children at highest risk.

The start of the transplant journey: Referral for pediatric solid organ transplantation

The focus of the majority of the psychosocial transplant literature is on post‐transplant outcomes, but the transplant journey starts much earlier than this, at the point when transplantation is first considered and a referral for transplant evaluation is made. In this review, we cover information regarding the meaning of the referral process for solid organ transplantation. We discuss various factors of the referral for transplantation including the impact of referral on the pediatric patient and the family, potential expectations and misconceptions held by pediatric patients and parents, the role of health literacy, decision‐making factors, and the informational needs of pediatric patients and parents. We elucidate steps that providers can take to enhance transplant referral and provide suggestions for much needed research within this area.

Evolution of an Inpatient Pediatric Psychology Consultation Service: Issues Related to Reimbursement and the Use of Health and Behavior Codes

The purpose of this study was to evaluate an inpatient pediatric psychology consultation service, with particular focus on issues related to financial reimbursement for services. Information was gathered over a four year period (2001–2005) regarding number of consults, referral source and referral question, type of insurance, and reimbursement rates for health and behavior codes versus mental health codes. The financial impact of hiring an insurance verification specialist was also explored. Results indicated that reimbursement rates for health and behavior codes were higher than reimbursement rates for mental health codes. Health and behavior codes were rejected in 31% of cases that they were billed; the primary reason for rejection was that these codes were not a covered service by Medicaid. Hiring an insurance verification specialist was found to be a cost-effective method for improving the financial “bottom-line” for psychology services. Implications for practice are discussed.

Psychological functioning of pediatric lung transplant candidates/recipients: a review of the literature.

Although lung transplants are performed in children, experience with the pediatric population remains limited. There is growing interest in studying the psychological functioning and quality of life in these patients following transplant. There is a body of literature about quality of life in adult lung transplant recipients, but little is known about how pediatric patients and their families function psychologically after transplant. The current article summarizes the pediatric literature with respect to psychological outcomes for transplant recipients and their parents and points to areas where additional research is needed.

Preschool Neurodevelopmental Outcomes in Children with Congenital Heart Disease

Objective To describe preschool neurodevelopmental outcomes of children with complex congenital heart disease (CHD), who were evaluated as part of a longitudinal cardiac neurodevelopmental follow‐up program, as recommended by the American Heart Association and the American Academy of Pediatrics, and identify predictors of neurodevelopmental outcomes in these children. Study design Children with CHD meeting the American Heart Association/American Academy of Pediatrics high‐risk criteria for neurodevelopmental delay were evaluated at 4‐5 years of age. Testing included standardized neuropsychological measures. Parents completed measures of child functioning. Scores were compared by group (single ventricle [1V]; 2 ventricles [2V]; CHD plus known genetic condition) to test norms and classified as: normal (within 1 SD of mean); at risk (1‐2 SD from mean); and impaired (>2 SD from mean). Results Data on 102 patients were analyzed. Neurodevelopmental scores did not differ based on cardiac anatomy (1V vs 2V); both groups scored lower than norms on fine motor and adaptive behavior skills, but were within 1 SD of norms. Patients with genetic conditions scored significantly worse than 1V and 2V groups and test norms on most measures. Conclusions Children with CHD and genetic conditions are at greatest neurodevelopmental risk. Deficits in children with CHD without genetic conditions were mild and may not be detected without formal longitudinal testing. Parents and providers need additional education regarding the importance of developmental follow‐up for children with CHD.