Parents' Views on Autopsy, Organ Donation, and Research Donation After Neonatal Death.

Importance: Parents who experience neonatal loss have the option to participate in autopsy, organ donation, and research donation. However, clinicians are uncomfortable discussing autopsy and may not be aware of research and organ donation opportunities.

Objective: To capture the perspectives of parents who had experienced neonatal loss about autopsy, organ donation, and research donation.

Teaching Death Disclosure: A Mixed-Method Comparison of Resident Self-Assessment and Standardized Patient Assessment.

Objective: To characterize how pediatric resident self-evaluation compares to standardized patient evaluations in simulated child death disclosure scenarios.

Methods: This was a prospective, observational, mixed-methods study in which 18 second-year pediatric residents delivered the news of a death of a child to a trained standardized patient (SP) couple. The SPs evaluated residents via a quantitative global rating (1-3 scale) and via qualitative comments.

The neurocognitive impact of Fabry disease on pediatric patients.

Fabry disease (FD) is an X-linked lysosomal storage disorder that results in progressive multisystemic organ complications. Several studies have examined neurocognitive impairments in adults; however, there is a paucity of research examining neurocognitive functioning in children with FD. This is the first exploratory study to examine the neurocognitive functioning of pediatric patients with FD and to evaluate the effects of enzyme replacement therapy (ERT) on neurocognitive functioning within this population.

Inborn errors of metabolism: psychosocial challenges and proposed family systems model of intervention.

Inborn errors of metabolism result in psychosocial crises that challenge individual and familial modes of functioning across the life cycle. Increased stress, mood disorders, interpersonal challenges, decreased quality of life, and grief reactions are all common for patients and their families. To effectively care for these patients, a holistic approach to their care, which incorporates their social context, is essential.