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Screening for Family Psychosocial Risk in Pediatric Hematopoietic Stem Cell Transplantation with the Psychosocial Assessment Tool

Family psychosocial risk screening is an important initial step in delivering evidence-based care in hematopoietic stem cell transplantation (HCT). Establishing an evidence-based screening approach that is acceptable, reliable, and valid is an essential step in psychosocial care delivery. This is a 3-institution multimethod study. In part 1, caregivers of children about to undergo HCT (n = 140) completed the Psychosocial Assessment Tool-Hematopoietic Cell Transplantation (PAT-HCT), a brief parent report screener adapted for HCT, and validating questionnaires.

Mon, 01/16/2023 - 11:26

Preserving privacy for pediatric patients and families: use of confidential note types in pediatric ambulatory care

Objective: This study evaluates and characterizes the use of a confidential clinic note type as part of the implementation of open notes at a free-standing children's hospital. We describe how this electronic health record feature which disables patient and family access to selected notes in the patient portal is used across our institution, which clinicians are using this feature, and the type of data our clinicians consider confidential.

Mon, 01/16/2023 - 09:26

Family resources moderate the relationship between seizure control and health-related quality of life in children with drug-resistant epilepsy

Objective: Pediatric drug-resistant epilepsy (DRE) is associated with poor health-related quality of life (HRQOL). Achieving seizure control, however, does not improve HRQOL in all children. This study sought to evaluate whether (1) baseline caregiver and family factors are associated with child HRQOL at 1-year follow-up over and above epilepsy characteristics, treatment, and seizure outcome; and (2) baseline family factors moderate the association between seizure outcome and child HRQOL at 1-year follow-up.

Wed, 01/11/2023 - 15:58

Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study

Introduction: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children.

Wed, 01/11/2023 - 13:43

Discharge Practices for Children with Home Mechanical Ventilation across the United States. Key-Informant Perspectives

Rationale: In 2016, the American Thoracic Society released clinical practice guidelines for pediatric chronic home invasive ventilation pertaining to discharge practices and subsequent management for patients with invasive ventilation using a tracheostomy. It is not known to what extent current U.S. practices adhere to these recommendations. Objectives: Hospital discharge practices and home health services are not standardized for children with invasive home mechanical ventilation (HMV). We assessed discharge practices for U.S. children with HMV.

Thu, 01/05/2023 - 15:20

Using Address Information to Identify Hardships Reported by Families of Children Hospitalized With Asthma

Objective: Socioeconomic hardship is common among children hospitalized for asthma but often not practically measurable. Information on where a child resides is universally available. We sought to determine the correlation between neighborhood-level socioeconomic data and family-reported hardships. Methods: Caregivers of 774 children hospitalized with asthma answered questions regarding income, financial strain, and primary care access.

Thu, 12/29/2022 - 15:16

Milk allergy most burdensome in multi-food allergic children

Background: Food allergy is a substantial health burden, which disproportionately affects children. Among children with food allergy, as many as 70% have multiple food allergies. Whereas the overall burden of food allergy on quality of life has been described, little is known about the burden of individual allergens.

Wed, 12/28/2022 - 17:04

Tracheostomy Education for Parents Utilizing Simulation: A New Paradigm In Parental Education

Easing the transition from hospital to home after a tracheostomy with discharge planning is a goal of family-centered patient care in pediatric settings. Proper tracheal tube maintenance and emergency management improves outcomes and reduces re-admissions. We hypothesized that family members caring for children with new tracheostomies will report greater knowledge, confidence, and preparedness after simulated training with high-fidelity mannequins.

Tue, 12/20/2022 - 13:53

Reliability and validity of a Japanese version of the psychosocial assessment tool for families of children with cancer

Background: Patients with childhood cancer and their families frequently experience psychosocial distress associated with cancer and its treatment. We thus examined the reliability and validity of a Japanese version of the Psychosocial Assessment Tool, which was designed to screen for psychosocial risk factors among families of children with cancer.

Tue, 12/20/2022 - 12:27

Improving the Readability of Pediatric Hospital Medicine Discharge Instructions

Background: Readable discharge instructions may help caregivers understand and implement care plans following hospitalization. Many caregivers of hospitalized children, however, have limited literacy. We aimed to increase the percentage of discharge instructions written at 7th grade level or lower for hospital medicine patients from 13% to 80% in 6 months.

Tue, 12/20/2022 - 12:18

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