Sociodemographic risk factors, parental stress and social support in the neonatal intensive care unit.

Objective: Investigate relationships among neonatal intensive care unit (NICU) parent demographics, reported stress and social support.

Design: Cross-sectional observation.

Setting: Tertiary referral NICU in Mid-Atlantic USA.

Length of Stay and Barriers to Discharge for Technology-Dependent Children During the COVID-19 Pandemic.

Background And Objective: During the coronavirus disease 2019 pandemic, technology-dependent children are at risk of encountering barriers to hospital discharge because of limits to in-home services. Transition difficulties could increase length of stay (LOS). With this study, we aim to (1) evaluate change in LOS and (2) describe barriers to hospital discharge between prepandemic and early pandemic periods for technology-dependent children.

Parental resilience and psychological distress in the neonatal intensive care unit.

Objective: To evaluate the associations between parental resilience and psychological distress during the neonatal intensive care unit (NICU) hospitalization.

Study Design: Observational cohort study of parents of preterm infants (n = 45) admitted to a NICU between December 2017-October 2019. Data on resilience and psychological distress were collected using validated scales.

Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases.

Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of their child's illness, goals of care, and what mattered most to their child from the parent's perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention.

Giving parents support: a randomized trial of peer support for parents after NICU discharge.

Background: Peer support during inpatient hospitalization has been recommended for NICU parents and can improve maternal mental health. Less is known about the impact of peer support after NICU discharge on parental mental health and infant healthcare utilization.

Methods: Three hundred families of infants approaching discharge from a Level IV NICU were randomized to receive a care notebook (control) or care notebook plus peer support for 12 months (intervention).

Paying for Pediatric Home Health Care: How Families of Children With Medical Complexity Navigate Gaps in Coverage.

Limited private and public financing of home health care for children with medical complexity can have harmful and costly consequences. Little is known of how parents and professionals in the United States navigate coverage for these services or how payer restrictions are shaping service quality. Qualitative interviews were conducted with families and professionals (eg, prescribers, providers, administrators of pediatric home health care [PHHC]) caring for children with medical complexity.

Simulation for Neonatal Endotracheal Intubation Training: How Different Is It From Clinical Practice?

Introduction: Neonatal endotracheal intubation is a critical skill that is difficult for learners to acquire even with simulation-based training (SBT). Trainees prefer clinical experiences over SBT. The objective of the study was to explore the differences between SBT and clinical practice in acquiring neonatal intubation skills to inform mannequin design and to improve fidelity.

Parental Depression Symptoms at Neonatal Intensive Care Unit Discharge and Associated Risk Factors.

Objective: To investigate the prevalence and risk factors associated with parental depressive symptoms at neonatal intensive care unit (NICU) discharge and determine the relationships among depressive symptoms, stress, and social support.

Study Design: Parents participating in the Giving Parents Support trial (n = 300) were surveyed before NICU discharge. Depressive symptoms, stress, and social support were assessed using the Center for Epidemiological Studies Depression Scale (CESD-10), Parental Stressor Scale: Neonatal Intensive Care Unit (PSS:NICU), Perceived Stress Scale (PSS-10), and Multidimensional Scale of Perceived Social Support (MSPSS).

Chronic Pancytopenia due to Centrally Mediated Hypothermia in Two Children with Severe Neurological Impairment.

We report on recurrent pancytopenia over five years in two children with severe impairment of the central nervous system. Assessment by hematology did not identify an etiology, including bone marrow biopsy in one. Both patients had sustained normalized blood cell counts following interventions to maintain or return to a temperature above 33 °C.

Lived Experience of Pediatric Home Health Care Among Families of Children With Medical Complexity.

. For children with complex medical conditions, pediatric home health care is a chronic need. It is a clinical service delivered entirely outside of clinical settings, granting families unparalleled expertise regarding service quality.

The Pediatric Home Health Care Process: Perspectives of Prescribers, Providers, and Recipients.

Background And Objectives: Children with medical complexity (CMC) often require pediatric home health care (PHHC) to meet their daily intensive care needs. Pediatricians are central to planning, implementing, and maintaining quality PHHC for CMC, yet a comprehensive road map for this process is lacking. With this national study, we aim to fill that gap.

Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention.

Objective: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)).

Methods: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; Respecting Choices Next Steps pACP intervention sessions 3 and 4).

The Giving Parents Support Study: A randomized clinical trial of a parent navigator intervention to improve outcomes after neonatal intensive care unit discharge.

Parents of infants hospitalized in a neonatal intensive care unit (NICU) experience increased anxiety and stress, which may persist after discharge. The rationale and design of a randomized clinical trial assessing the impact of a 1-year, post-discharge, peer support intervention (parent navigation) on parental mental health and infant health care utilization is described. Qualitative methods guided the adaptation of an existing parent support program to target emotional and resource-related needs of NICU families.

Learning to deliver care in a medical home: a qualitative analysis of residents' reflections on practice.

Objective: We used online structured reflection to improve residents' understanding of care delivery in the medical home.

Methods: Third-year pediatric residents participated in an online curriculum on delivering effective, patient-centered primary care in the medical home to children with special health care needs. Residents were prompted to respond to questions designed to stimulate reflection.