When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals.

Provider moral distress in caring for tracheostomy and ventilator dependent children: A single institution cross-sectional evaluation.

Objective: To determine levels of moral distress in a pediatric unit caring for patients with tracheostomy/ventilator dependence.

Hypothesis: Moral distress will be significant in a dedicated pediatric trach/vent unit.

Methods: The Moral Distress Survey-Revised (MDS-R) is a 21-question survey measuring moral distress in pediatrics.

A novel behavioral health program for family caregivers of children admitted to a transitional chronic ventilator unit.

Background: The care of mechanically ventilated pediatric patients is complex and burdensome. It is essential to adequately support the family caregivers of these children to optimize outcomes; however, there is no literature describing interventions for caregivers in this population.

Research Question: This study described a novel behavioral health program and examined its impact on family caregiver engagement and psychological distress on a pediatric inpatient chronic ventilator unit.

Executive functioning in pediatric cystic fibrosis: A preliminary study and conceptual model.

Background: Research has shown that broad cognitive functioning in individuals with CF is intact. Specific executive functioning (EF) deficits have been identified, however, and adults with CF report more symptoms of ADHD than the general population. EF skills are critical to the management of a complex disease like CF although studies have not adequately examined EF mechanisms in CF.

Preparing families to care for ventilated infants at home.

Advances in neonatal care have led to increased survival of infants with complex medical needs and technology dependence. Transition of the ventilator-dependent infant from hospital to home is a complex process that requires extensive coordination between the medical team and family. Home caregivers must be prepared to provide routine care for the ventilator-dependent child and respond to life-threatening emergencies.

Psychological predictors of nutritional adherence in adolescents with cystic fibrosis.

Background & Aims: The CF medical regimen is notoriously burdensome, comprised of respiratory treatments, oral medications, and nutritional demands. Adequate caloric intake has been identified as a challenge over the lifespan; however, we lack detailed information about nutritional adherence in teens, and the contextual drivers of these behaviors. Adolescence is a time of increased responsibility, reduced parental monitoring, and growing peer connections.

Assessing psychosocial risk in pediatric cystic fibrosis.

Background: Psychosocial risk factors are known to impact quality of life, treatment adherence, and health outcomes. No standardized comprehensive psychosocial risk screener is routinely utilized in cystic fibrosis (CF) care. The objectives of the study were to describe the range and severity of psychosocial risk within this CF population, investigate the reliability of a comprehensive psychosocial screener in pediatric CF clinical care, and explore relationships between psychosocial risk and key factors affecting health outcomes.

Caregiver Daily Experiences Associated with Child Asthma Symptoms.

Objective: In this study, we used ecological momentary assessment (EMA) delivered via smart- phones to determine how the daily experiences (comfort in neighborhood, ability to manage child's asthma, positive/negative affect) of 59 caregivers (90% African-American/black) living in an urban setting are associated with asthma symptoms in children ages 7-12 years (M = 9.56 years).

Methods: Caregivers and their children with asthma completed a baseline research ses- sion, followed by 14 days of EMA surveys completed on smartphones.

The influence of comorbid asthma on the severity of symptoms in children with attention-deficit hyperactivity disorder.

Objective: The current study examined the association between asthma and attention-deficit hyperactivity disorder (ADHD) symptoms in a clinical pediatric sample.

Methods: Demographic and neuropsychological data for children with a billing diagnosis of ADHD were extracted from a clinical database. Families completed standard rating scales.

Acculturation and quality of life in urban, African American caregivers of children with asthma.

Objective: Racial/ethnic minority caregivers of children with asthma are at risk for low levels of quality of life (QOL). Limited research has identified factors that contribute to lower QOL among African American caregivers. This study examined associations between acculturation (e.

Disease disclosure in individuals with cystic fibrosis: Association with psychosocial and health outcomes.

Background: This study aimed to quantify cystic fibrosis (CF) disclosure and examine associations between disclosure and psychosocial and health outcomes.

Methods: Participants completed measures assessing disease disclosure and psychosocial outcomes. Data from chart reviews and pharmacy records were obtained.

Health disparities among youth with type 1 diabetes: A systematic review of the current literature.

Introduction: Research in pediatric Type 1 diabetes (T1D) has reliably identified differences in health outcomes based on race/ethnicity and socioeconomic status (SES). Racial/ethnic minority and/or low-SES youth consistently display poorer physical health and psychological functioning than racial/ethnic majority and higher-SES youth. The purpose of this review is to better understand health disparities in T1D by race/ethnicity and SES, and to provide recommendations for researchers based on these findings.

Quality of Life in Children With Asthma: A Developmental Perspective.

Objective: The current study investigated whether factors associated with quality of life (QOL) in children with asthma (e.g., family functioning, asthma routines, asthma severity) differed by child age.

Family Functioning and Treatment Adherence in Children and Adolescents with Cystic Fibrosis.

Cystic fibrosis (CF) is one of the most challenging pediatric illnesses for families to manage. There is, however, limited research that considers the associations between family functioning and treatment adherence in children and adolescents with CF. Nineteen children with CF (mean age=12.