ABSTRACT
OBJECTIVES: To determine factors associated with bedside family presence in the PICU and to understand how individual factors interact as barriers to family presence. DESIGN: Mixed methods study. SETTING: Tertiary children's hospital PICU. SUBJECTS: Five hundred twenty-three children of less than 18 years enrolled in the Seattle Children's Hospital Outcomes Assessment Program from 2011 to 2017. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Quantitative: Family was documented every 2 hours. Exposures included patient and illness characteristics and family demographic and socioeconomic characteristics. We used multivariable logistic regression to identify factors associated with presence of less than 80% and stratified results by self-reported race. Longer PICU length of stay (LOS), public insurance, and complex chronic conditions (C-CD) were associated with family presence of less than 80%. Self-reported race modified these associations; no factors were associated with lower bedside presence for White families, in contrast with multiple associations for non-White families including public insurance, C-CD, and longer LOS. Qualitative: Thematic analysis of social work notes for the 48 patients with family presence of less than 80% matched on age, LOS, and diagnosis to 48 patients with greater than or equal to 95% family presence. Three themes emerged: the primary caregiver's prior experiences with the hospital, relationships outside of the hospital, and additional stressors during the hospitalization affected bedside presence. CONCLUSIONS: We identified sociodemographic and illness factors associated with family bedside presence in the PICU. Self-reported race modified these associations, representing racism within healthcare. Family presence at the bedside may help identify families facing greater disparities in healthcare access.
Subject(s)
Health Services Accessibility , Hospitalization , Child , Humans , Retrospective Studies , Hospitals, Pediatric , Intensive Care Units, PediatricABSTRACT
Pediatric palliative care providers often care for children with rare, poorly understood diseases. In addition to grappling with a life-limiting diagnosis, families face complexity in decision making stemming from the prognostic uncertainty surrounding their child's rare condition. We discuss several unique challenges, illustrated through case studies of three children who shared the rare diagnosis of congenital disorder of glycosylation.
Subject(s)
Congenital Disorders of Glycosylation/psychology , Congenital Disorders of Glycosylation/therapy , Hospice Care/methods , Hospice Care/psychology , Palliative Care/methods , Palliative Care/psychology , Peptide-N4-(N-acetyl-beta-glucosaminyl) Asparagine Amidase/deficiency , Rare Diseases/therapy , Adolescent , Child , Child, Preschool , Decision Making , Female , Humans , Infant , Infant, Newborn , Male , Professional-Family RelationsABSTRACT
The reported incidence of cerebral embolic or hemorrhagic complications related to mechanical circulatory support in children is high, even while subjects are managed with aggressive antithrombotic therapy. The safety and utility of endovascular treatment for stroke in the pediatric VAD population has not been established in the published literature. We describe a nine-yr-old patient on BiVAD support who experienced threatened AIS on two separate occasions. He was treated successfully via mechanical embolectomy on both occasions and survived to transplantation with minimal neurologic deficits.
