Management of Uncertainty in Everyday Pediatric Care.

Medicine is filled with uncertainty. Clinicians may experience uncertainty due to limitations in their own or existing medical knowledge. Uncertainty can be scientific, practical, or personal, and may involve issues related to probability, ambiguity, and complexity.

Parent Perspectives on the Child Experience of Pediatric Home Ventilation via Tracheostomy.

Background And Objective: Parents facing the decision of whether to initiate pediatric mechanical ventilation via tracheostomy ("home ventilation") report wanting information about what to expect for life at home for their child. The study objective is to explore parent descriptions of the child experience of home ventilation to increase awareness for clinicians in the inpatient setting caring for these children.

Methods: Semistructured interviews were conducted using purposive sampling of parents with children who initiated home ventilation within the previous 5 years from 3 geographically diverse academic medical centers.

Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation.

Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation.

Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values.

Family-Reflections.com: Creating a parent-to-parent web-based tool regarding pediatric home ventilation.

Background: The decision to initiate pediatric mechanical ventilation via tracheostomy ("home ventilation") is complex and parents often desire information from other parents who have faced this decision. However, parent-to-parent communication is challenging as it is difficult to connect new families to experienced families in ways that optimize informed, balanced decision-making.

Objective: Create a parent-to-parent web-based tool to support decision-making about pediatric home ventilation.

"What Would Give Her the Best Life?": Understanding Why Families Decline Pediatric Home Ventilation.

Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown about the families who decline. To describe the rationales of families who decline home ventilation.

Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling.

Aim: To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home mechanical ventilation (HMV).

Method: Inductive thematic analysis was performed on data from telephone interviews with parents who chose for and against HMV for their child with SNI at three academic children's hospitals across the USA.

Results: Twenty-six parents/legal guardians of 24 children were interviewed.

Parent perspectives on facilitating decision-making around pediatric home ventilation.

Rationale: Deciding about pediatric home ventilation is exceptionally challenging for parents. Understanding the decision-making needs of parents who made different choices for their children could inform clinician counseling that better supports parents' diverse values and goals.

Objectives: To determine how clinicians can meet the decisional needs of parents considering home ventilation using a balanced sample of families who chose for or against intervention.

Life with pediatric home ventilation: Expectations versus experience.

Objectives: To explore the family experience of home ventilation through a comparison of anticipated home life changes with subsequent experiences.

Study Design: Guided interviews with parents across three states who chose home ventilation for their child within the last 5 years.

Patient-subject Selection: Purposive sampling of parents who chose home ventilation for their child within the last 5 years.

Family Experiences Deciding For and Against Pediatric Home Ventilation.

Objective: To understand what considerations drive family decisions for, and against, pediatric home ventilation.

Study Design: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3 geographically dispersed institutions.

Results: In total, 38 families (42 parents) were interviewed; 20 families opted for pediatric home ventilation, and 18 families opted against.

Material Hardship and Indoor Allergen Exposure among Low-Income, Urban, Minority Children with Persistent Asthma.

Traditional measures of socioeconomic status (SES) are associated with asthma morbidity, but their specific contributions are unclear. Increased exposure to indoor allergens among low SES children is an important consideration. Material hardship, a concept describing poor access to basic goods and services, may explain the relationship between low SES and indoor allergen exposure, and thereby, the increased risk of asthma morbidity.