Interpersonal relationships after prenatal diagnosis of congenital heart disease: Social stressors and supports.

Objective: To identify social stressors and supports for expectant parents after prenatal diagnosis of congenital heart disease (CHD) and inform interventions to reduce distress.

Method: Parents of children diagnosed prenatally with CHD (N = 37) were purposively sampled across eight health systems. Qualitative data were collected using crowdsourcing methods and coded/analyzed using thematic analysis.

Parent and Primary Care Clinician Perceptions About Pediatric Hypertension.

Importance: Despite published guidelines and a prevalence of pediatric hypertension of approximately 3%, less than 25% of affected children are identified, with 60% not receiving any intervention despite detection. Understanding the knowledge and perceptions of parents or caregivers and health care teams is crucial to identify factors that may contribute to these unacceptably low detection rates.

Objective: To examine the knowledge and perceptions of parents and health care teams regarding pediatric hypertension to identify common themes contributing to low hypertension detection.

Disease-modifying therapies for sickle cell disease: Decisional needs and supports among adolescents and young adults.

Background: Shared decision-making is one promising solution to addressing barriers in use of disease-modifying therapies for adolescents and young adults (AYAs) with sickle cell disease (SCD). A thorough understanding of decisional needs can guide the development of decisional supports and promote shared decision-making.

Procedure: Informed by the Ottawa Decision Support Framework (ODSF), we conducted a qualitative analysis to assess decisional needs and supports reported by AYAs with SCD, their caregivers, and healthcare providers.

User-Centered Development of HEARTPrep, a Digital Health Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease.

User-centered models for the development of digital health interventions are not consistently applied in healthcare settings. This study used a five-phase, user-centered approach to develop HEARTPrep, a psychosocial intervention delivered via mobile app and telehealth to mothers expecting a baby with congenital heart disease (CHD) to promote maternal, family, and child well-being. Phases of intervention development were: (I) establishing partnerships; (II) creating content; (III) developing prototype and testable intervention; (IV) conducting think-aloud testing; and (V) completing beta testing.

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.

Experiences of fetal care, social support, and emotional functioning during the COVID-19 pandemic in women carrying a fetus with CHD.

Objective: To explore how the COVID-19 pandemic affected fetal care, social support, and emotional functioning for women carrying a fetus with CHD.

Method: This was a single-centre qualitative study of 31 women who received a prenatal diagnosis of CHD during the pandemic. Patients completed semi-structured interviews about their experiences with fetal care, social support, and perceptions of risk to themselves and their fetus.

Priorities for Well Child Care of Families Affected by Parental Opioid Use Disorder.

Background And Objectives: Parenting women in treatment for opioid use disorder (OUD) report a lack of family centeredness and anticipatory guidance within well child care (WCC), and WCC utilization is low among affected children. We explore priorities for WCC visit content to inform primary care recommendations for this population.

Methods: This study is a qualitative study of parenting women from one urban, academic OUD treatment program and pediatric primary care clinicians from a nearby affiliated pediatric practice.

Group Well Child Care for Mothers with Opioid Use Disorder: Framework for Implementation.

Objective: For parents with opioid use disorder (OUD) and their children, group well child care (WCC) is an under-studied intervention that may reduce stigma, increase quality of care, and improve clinical outcomes. We explored barriers and facilitators to this intervention using an implementation science framework.

Methods: A qualitative study was conducted from October 2020-March 2021 as part of the planning phase of a cluster-randomized trial of group WCC.

Virtually Delivered Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease: Feasibility and Acceptability of HEARTPrep.

Prenatal diagnosis of congenital heart disease (CHD) often leads to anxiety, depression, and traumatic stress in expectant mothers, with long-term implications for the child and family. However, psychosocial intervention is rarely incorporated into prenatal care. HEARTPrep is a virtually delivered psychosocial intervention aimed at reducing distress and social isolation and increasing parenting self-efficacy and hope for mothers expecting a baby with CHD to promote long-term child/family well-being.

A Psychosocial Care Model for Families Affected by Congenital Heart Disease.

Objectives: To develop a model of family-based psychosocial care for congenital heart disease (CHD).

Design: Qualitative study using crowdsourced data collected from parents of young children with CHD who received care across 42 hospitals.

Setting: Yammer, a social networking platform used to facilitate online crowdsourcing and qualitative data collection.

Development of the data registry for the Cardiac Neurodevelopmental Outcome Collaborative.

Children with congenital heart disease (CHD) can face neurodevelopmental, psychological, and behavioural difficulties beginning in infancy and continuing through adulthood. Despite overall improvements in medical care and a growing focus on neurodevelopmental screening and evaluation in recent years, neurodevelopmental disabilities, delays, and deficits remain a concern. The Cardiac Neurodevelopmental Outcome Collaborative was founded in 2016 with the goal of improving neurodevelopmental outcomes for individuals with CHD and pediatric heart disease.

The Child Healthcare at MATER Pediatric Study (CHAMPS): a 2-arm cluster randomized control trial of group well child care for mothers in treatment for opioid use disorder and their children.

Background: Studies suggest that group-based well child care-a shared medical appointment where families come together as a group to receive pediatric primary care-increases patient-reported satisfaction and adherence to recommended care. Evidence supporting the use of group well child care for mothers with opioid use disorder, however, is lacking. The overall objective of the Child Healthcare at MATER Pediatric Study (CHAMPS) trial is to evaluate a group model of well child care for mothers with opioid use disorder and their children.

Prevalence and associated factors of post-traumatic stress disorder in parents whose infants have single ventricle heart disease.

Introduction: Post-traumatic stress disorder occurs in parents of infants with CHD, contributing to psychological distress with detrimental effects on family functioning and well-being. We sought to determine the prevalence and factors associated with post-traumatic stress disorder symptoms in parents whose infants underwent staged palliation for single ventricle heart disease.

Materials And Methods: A large longitudinal multi-centre cohort study evaluated 215 mothers and fathers for symptoms of post-traumatic stress disorder at three timepoints, including post-Norwood, post-Stage II, and a final study timepoint when the child reached approximately 16 months of age, using the self-report questionnaire Impact of Event Scale - Revised.

Pediatric and Congenital Cardiovascular Disease Research Challenges and Opportunities: JACC Review Topic of the Week.

The National Heart, Lung, and Blood Institute convened a workshop in August 2021 to identify opportunities in pediatric and congenital cardiovascular research that would improve outcomes for individuals with congenital heart disease across the lifespan. A subsidiary goal was to provide feedback on and visions for the Pediatric Heart Network. This paper summarizes several key research opportunities identified in the areas of: data quality, access, and sharing; aligning cardiovascular research with patient priorities (eg, neurodevelopmental and psychological impacts); integrating research within clinical care and supporting implementation into practice; leveraging creative study designs; and proactively enriching diversity of investigators, participants, and perspectives throughout the research process.

The Relationship of Family Factors to Psychosocial Outcomes in Children with Hypoplastic Left Heart Syndrome at 6 Years of Age.

Objective: The objective of this study was to describe the relationships between family factors and outcomes for children with hypoplastic left heart syndrome (HLHS).

Study Design: This cross-sectional study was ancillary to the Pediatric Heart Network Single Ventricle Reconstruction Extension Study to examine family factors including parental mental health, quality of life (QOL), family resources, function and management, and their relationships to child psychosocial outcomes (adaptive behavior, internalizing and externalizing behaviors and health-related quality of life [HRQOL]) at 6 years of age.

Results: Participants were parents (115 mothers, 71 fathers) of children with HLHS.

Opportunities to Increase Well-Child Care Engagement for Families Affected by Maternal Opioid Use Disorder: Perceptions of Mothers and Clinicians.

Objective: Previous research suggests gaps in well-child care (WCC) adherence, quality, and effectiveness for children impacted by parental opioid use disorder (OUD). The objective of this study was to gather in-depth information regarding maternal and clinician-reported factors that enhance ("facilitators") or hinder ("barriers") WCC engagement as well as mothers' experiences during WCC visits.

Methods: Thirty mothers who were in treatment for OUD and 13 clinicians working at a pediatric primary care clinic participated in this qualitative study.

Meeting Parents' Needs for Education and Preparation following Congenital Heart Disease Diagnosis: Recommendations from a Crowdsourced Study.

Objective: This article characterizes the educational needs of parents following fetal or neonatal congenital heart disease (CHD) diagnosis and generates recommendations for meeting these needs.

Study Design: Online crowdsourcing methods were used to collect qualitative data from 95 parents of children with CHD regarding their needs for education and preparation following fetal or neonatal diagnosis. Data were analyzed using qualitative methods and themes were organized around the substructure of met and unmet needs.

Establishing a Valid, Reliable, and Efficient Chart Review Process for Research in Pediatric Integrated Primary Care Psychology.

Retrospective chart review is an accessible form of research that is commonly used across medical fields but is underutilized in behavioral health. As a relatively newer area of research, the field of pediatric integrated primary care (IPC) would particularly benefit from guidelines for conducting a methodologically sound chart review study. Here, we use our experiences building a chart review procedure for a pediatric IPC research project to offer strategies for optimizing reliability (consistency), validity (accuracy), and efficiency.

Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease.

Input from diverse stakeholders is critical to the process of designing healthcare interventions. This study applied a novel mixed-methods, stakeholder-engaged approach to co-design a psychosocial intervention for mothers expecting a baby with congenital heart disease (CHD) and their partners to promote family wellbeing. The research team included parents and clinicians from 8 health systems.

Opportunities to enhance parental well-being during prenatal counseling for congenital heart disease.

Prenatal diagnosis of congenital heart disease (CHD) can be a life-altering and traumatic event for expectant parents. Parental anxiety, depression, and traumatic stress are common following a prenatal cardiac diagnosis and if untreated, symptoms often persist long-term. During prenatal counseling, parents must try to manage psychological distress, navigate uncertainty, process complex medical information, and make high-stakes medical decisions for their unborn child and their family.

COVID-19 Exposure and Family Impact Scales for Adolescents and Young Adults.

Objective: To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA.