Maternal Reaction and Psychological Coping After Diagnosis of Congenital Heart Disease.

OBJECTIVES: A diagnosis of congenital heart disease (CHD) during fetal life or infancy can be devastating for parents, resulting in significant psychological stressors. The goals of this study were to (1) assess maternal resolution and adaptation to a new diagnosis of CHD, (2) explore how maternal resolution and adaptation relates to psychological well-being and (3) evaluate whether specific illness parameters impact resolution status. METHODS: This cross-sectional study evaluated resolution to diagnosis in the first 6 months of life for mothers of children with CHD. Mothers completed a Reaction to Diagnosis Interview (RDI) and psychological surveys assessing stress, depression, and coping skills. The RDI invites parents to discuss the diagnosis, changes in their thoughts and feelings since the diagnosis, and reflections on why they think they have a child with a medical condition. A chart review of the child recording illness parameters was also performed. RESULTS: Thirty-six mothers participated in this study. Twelve of their children had a prenatal diagnosis of CHD (33.3%). Seventeen mothers (47.2%) were unresolved to the diagnosis of CHD in their child, regardless of the timing or severity of the diagnosis. Twenty-four participants (68.6%) had significant or highly significant life stress and 9 participants (25.7%) had clinical concerns or met criteria for Post-Traumatic Stress Disorder. Nineteen mothers (55.9%) were at risk for clinical depression. Mothers unresolved to the diagnosis had higher rates of post-traumatic stress than those resolved to the diagnosis (47.1% vs. 10.5%, p = 0.03). Mothers of infants with a prenatal diagnosis of CHD reported significantly lower rates of life stress despite higher severity of heart defects (p = 0.02). CONCLUSIONS FOR PRACTICE: Mothers of infants with CHD have similar proportions of resolution to diagnosis compared to mothers of children with other chronic diseases. They experience a high rate of symptoms of life stress, post-traumatic stress and clinical depression. Symptoms of post-traumatic stress are higher in mothers unresolved to the diagnosis. Identification of those at highest risk for poor adaptation to the diagnosis may allow for targeted psychological support services for those most vulnerable.

A diagnosis of congenital heart disease can result in significant parental stress and negatively impact parental and child bonding. Our study demonstrates that parents of infants with cardiac disease experience high rates of life stress, post-traumatic stress and clinical depression. Mothers unresolved to the diagnosis have higher rates of post-traumatic stress. Those who received a prenatal diagnosis had lower life stress despite greater disease severity. Identification of mothers at highest risk for poor adaptation to the diagnosis may allow for targeted psychological support services for those most vulnerable.

Describing Perceived Racial Bias Among Youth With Sickle Cell Disease.

Objectives: Sickle cell disease (SCD) predominately affects Black Americans. This is the first study of its kind to describe the racial bias experiences of youth with SCD and their reactions to these experiences. Methods: Participants were 20 youth with SCD (ages 13-21 years) who were asked to describe any racial bias events they experienced, as recorded on the Perception of Racism in Children and Youth measure (PRaCY). Interviews were recorded, transcribed, and analyzed by two independent raters using a conventional content analysis approach. Results: All participants reported at least one incident of racial bias. Content analysis of racial bias events (n = 104) yielded 4 categories and 12 subcategories as follows: Perpetrator (Peers, Authority Figures, and General Public), Type of Racial Bias (Explicit, Implicit), Behavioral Reaction (Approach, Avoidant), and Emotional Response (Dysphoria, Anger, Unconcerned, Inferior, Anxious). Discussion: This study provides a description of racial bias experiences within community and medical settings and highlights the need for further evaluation of the impact of racial bias among youth with SCD.

Parents' Experience of Hope When Their Child Has Cancer: Perceived Meaning and the Influence of Health Care Professionals.

OBJECTIVE: This study examined the role and importance of hopefulness for parents of children with cancer, how hope relates to parents' experience with the diagnosis, and the influence nurses and other health care professionals have on parents' hope. METHOD: Using an interview format, 50 parents of children diagnosed with cancer were given the Reaction to Diagnosis Interview, and asked 5 open-ended questions about hope. Answers were analyzed using content analysis. Parents' adaptation to their child's diagnosis was compared with answers to the hope questions. RESULTS: Parents defined hope as a knowing, belief, or wish regarding their child's health. They emphasized the importance of hope over the course of their child's treatment. Staff increased parents' hope by providing care to children and families, educating parents, and by connecting with and providing a positive outlook for families. Most parents felt there was nothing staff did to decrease their hope. CONCLUSION: Understanding parents' experiences validates the quality care and connections we make with children and families, and encourages us to consider the effects of our interactions. This underscores the importance of education and support as a means of instilling hope in parents, who are valued, critical members of their child's health care team.

Perceived Racial Bias and Health-Related Stigma Among Youth with Sickle Cell Disease.

OBJECTIVE: Little is known about the role of perceived racial bias and health-related stigma on the health of youth with sickle cell disease (SCD). The purpose of this study was to investigate the occurrence of perceived racial bias and health-related stigma among youth with SCD and its relationship with psychological and physical well-being. METHODS: Twenty-eight youth with SCD, ages 13 to 21, were recruited from outpatient and inpatient settings at an urban children's medical center. Participants completed measures of perceived racial bias, perceived health-related stigma, depression, quality of life, and pain burden. RESULTS: Most participants endorsed occurrences of racial bias and health-related stigma. The findings indicate that greater perceived racial bias was associated with greater pain burden, and greater perceived health-related stigma was related to lower quality of life. CONCLUSION: Perceived racial bias and health-related stigma may be important to consider for future research investigating the psychological and physiological features of SCD for youth.

Parents' Experience With Their Child's Cancer Diagnosis: Do Hopefulness, Family Functioning, and Perceptions of Care Matter?

OBJECTIVES: This study assessed the experience of parents who have a child diagnosed with cancer and whether parental hope, family functioning, and perceptions of care distinguish those parents who have adapted to the diagnosis versus those who have not adapted. METHODS: Fifty parents completed an interview about the diagnosis experience and questionnaires about hopefulness, family functioning, and family-centered care. RESULTS: A majority of parents had come to terms with the diagnosis; however, a subset indicated feeling emotionally disengaged from the experience and having persistent thoughts about why this had happened to them. In addition, parents who were having a difficult time adapting reported lower hopefulness and felt that they received more information about support services from medical providers compared with parents who had come to terms with the diagnosis. CONCLUSIONS: By recognizing families who continue to struggle with the diagnosis, nurses may be better equipped to approach families and evaluate their needs, including coping and adaptation. Asking parents about their experience can also lead to more appropriate and timely care and referral and allows nurses to provide care that engenders hopefulness.

Abdominal CT Does Not Improve Outcome for Children with Suspected Acute Appendicitis.

INTRODUCTION: Acute appendicitis in children is a clinical diagnosis, which often requires preoperative confirmation with either ultrasound (US) or computed tomography (CT) studies. CTs expose children to radiation, which may increase the lifetime risk of developing malignancy. US in the pediatric population with appropriate clinical follow up and serial exam may be an effective diagnostic modality for many children without incurring the risk of radiation. The objective of the study was to compare the rate of appendiceal rupture and negative appendectomies between children with and without abdominal CTs; and to evaluate the same outcomes for children with and without USs to determine if there were any associations between imaging modalities and outcomes. METHODS: We conducted a retrospective chart review including emergency department (ED) and inpatient records from 1/1/2009-2/31/2010 and included patients with suspected acute appendicitis. RESULTS: 1,493 children, aged less than one year to 20 years, were identified in the ED with suspected appendicitis. These patients presented with abdominal pain who had either a surgical consult or an abdominal imaging study to evaluate for appendicitis, or were transferred from an outside hospital or primary care physician office with the stated suspicion of acute appendicitis. Of these patients, 739 were sent home following evaluation in the ED and did not return within the subsequent two weeks and were therefore presumed not to have appendicitis. A total of 754 were admitted and form the study population, of which 20% received a CT, 53% US, and 8% received both. Of these 57%, 95% CI [53.5,60.5] had pathology-proven appendicitis. Appendicitis rates were similar for children with a CT (57%, 95% CI [49.6,64.4]) compared to those without (57%, 95% CI [52.9,61.0]). Children with perforation were similar between those with a CT (18%, 95% CI [12.3,23.7]) and those without (13%, 95% CI [10.3,15.7]). The proportion of children with a negative appendectomy was similar in both groups: CT (7%, 95% CI [2.1,11.9]), US (8%, 95% CI [4.7,11.3]) and neither (12%, 95% CI [5.9,18.1]). CONCLUSION: In this uncontrolled study, the accuracy of preoperative diagnosis of appendicitis and the incidence of pathology-proven perforation appendix were similar for children with suspected acute appendicitis whether they had CT, US or neither imaging, in conjunction with surgical consult. The imaging modality of CT was not associated with better outcomes for children presenting to the ED with suspected appendicitis.

Maternal distress influences young children's family representations through maternal view of child behavior and parent-child interactions.

Distress of a parent is a key influence on the quality of the child's experience in the family. We hypothesized that maternal distress would spill over into more negative views of their children's behaviors and less emotional availability in their relationships. Further, we investigated whether these cumulative experiences contributed to children's emerging narratives about mothers and family life. In this longitudinal study, mothers of young twin children reported their distress on three occasions in relation to: self, the marital relationship, and the family climate. Mothers also reported on their children's externalizing behavior problems. Mother-child interaction was observed focusing on maternal sensitivity and child responsivity. Children responded to story stem beginnings about challenging situations in the family and their narratives were scored for family conflict and cohesion themes. Actor-partner interdependence model methods of dyadic data analysis accounted for the inclusion of both twins in the analysis. Results from structural equation models supported the hypothesized cumulative experience of maternal distress on children's family life representations for both family conflict and family cohesion. A family environment in which children are exposed to persistent maternal distress early in life may have cumulative effects, influencing how mothers interact with and view their children's behavior at later developmental stages. Moreover, exposure to repeated distress for longer periods of time may contribute to an intergenerational continuity of distress for the child that may become rooted in negative affective bias in their own view of family relationships.

Parent adaptation and family functioning in relation to narratives of children with chronic illness.

BACKGROUND: This study assessed the experience of parents who have a child diagnosed with chronic illness and whether children's narratives mirror these experiences. METHOD: A total of 66 parents completed assessments about adaptation and family functioning. Children with type 1 diabetes or asthma participated in a story-stem narrative task. RESULTS: Forty-one percent of parents were unresolved about their child's diagnosis, regardless of time since diagnosis. Unresolved parents reported lower family functioning, and children in these families had more family conflict themes. CONCLUSIONS: Parental/Child narratives may provide unique insights into family adjustment. Future work may consider interventions related to family communication and expression of emotion.

Simulation training for surgical residents in pediatric trauma scenarios.

INTRODUCTION: Pediatric trauma requires several medical professionals working together as a highly functioning team. Since critical pediatric medical events are rare, routine practice can be one method of ensuring that all members communicate and provide quality care. The goal of this study was to evaluate whether high-fidelity simulation training improved surgery residents' knowledge and self-efficacy in relation to pediatric trauma scenarios. METHODS: Participants attended training that included initial assessments of knowledge and self-efficacy, lecture, and practice with three trauma scenarios. After the training, residents completed pretest measures again. RESULTS: Findings indicated that resident knowledge and self-efficacy significantly increased afterthe simulation training. CONCLUSION: The current study suggests that for the adequate care of pediatric patients during trauma/emergency situations, high-fidelity simulation training may be beneficial. This may be particularly true for emergencies that are less frequent and not well practiced by clinicians and students.