Overwhelmed to ownership: The lived experience of parents learning to become caregivers of children with tracheostomies.

BACKGROUND: Caring for a child with a tracheostomy is challenging and requires parents to master advanced medical skills, often without prior medical training. Tracheostomy education programs are well-established, yet the experience of parents becoming competent caregivers is unexplored. Providing effective education may impact long-term child and caregiver outcomes and mitigates preventable hospital readmissions. OBJECTIVE: This study aimed to explore parents' experience completing tracheostomy education within a children's hospital and understand the factors that promote or hinder learning. METHODS: We conducted a qualitative descriptive study on twenty-three purposively sampled parents of children with new tracheostomies from 2020 to 2021 who were admitted to the Transitional Intensive Care Unit (TICU) at a quaternary pediatric hospital. Semi-structured interviews were conducted after parents completed tracheostomy education and before discharge. Inductive thematic analysis was employed to identify themes and subthemes. RESULTS: Five major themes emerged: decision making, balancing benefits, becoming a caregiver, healthcare providers (HCPs) as barriers and facilitators for learning, and recommendations for tracheostomy education programs. Parents described becoming a caregiver in four stages: initial realization, overwhelmed, owning care, and role transition. Learning tracheostomy management in a positive, collaborative, supportive environment helped parents be more confident in their skills and eased their transition to home. Previous life experience, learning style, and healthcare professional behaviors influenced parents' transition into the caregiver role. CONCLUSIONS: Findings will inform interventions for improving pediatric tracheostomy education programs, including the HCP's role in supporting families. Equipping caregivers with the skills to provide tracheostomy interventions in the home could decrease preventable readmissions and improve outcomes in this medically fragile, high-risk pediatric population.

Utilizing a Behavioral Health Bundle to Improve Patient and Clinician Safety for Hospitalized Children.

Due to limited psychiatric hospital availability, increasing numbers of pediatric patients with behavioral health (BH) needs are hospitalized in medical units in the US Patients and staff are at increased risk for safety events like self-harm or aggression. Our study aimed to decrease safety events by 25% over a year among hospitalized children with BH diagnoses by implementing an intervention bundle. METHODS: A multidisciplinary team developed and implemented a BH intervention bundle that included a BH equipment cart, an electronic medical record tool for BH patient identification/stratification, a de-escalation team, daily operational BH phone call, and staff training with a safety checklist. The primary outcome measure was the number of reported safety events in BH patients. Process measure was "medically avoidable days", wherein a medically cleared patient remained hospitalized awaiting transfer to inpatient psychiatric units; balance measure was staff perception of the workflow. RESULTS: Although not statistically significant, we noted a downward trend in safety events per 1,000 patient days from 0.47 preintervention to 0.34 postintervention (28% decrease). Special cause variation was not achieved for BH safety events or medically avoidable days. Although one-third of staff members felt the BH bundle was helpful, many reported it as impeding workflow and expressed ongoing discomfort caring for BH patients. CONCLUSIONS: The implementation of a BH intervention bundle requires significant institutional support and interdisciplinary coordination. Despite additional training, equipment, and staff support, we did not achieve measurable improvements in patient safety and care coordination. Additional studies to measure impact and improve care for this population are needed.

Automated summaries of serious adverse events in the hepatitis C antiviral long-term treatment against cirrhosis trial.

BACKGROUND: Even though adverse event (AE) collection and official accounting are mandatory for clinical trials, there are limited detailed guidelines specifying how to summarize the event for reporting in a timely and expeditious manner. This article details the AE and serious adverse event (SAE) reporting summary developed for a large multi-center National Institutes of Health (NIH)-sponsored clinical trial. PURPOSE: To review and analyze the large volume of AE data reported by 10 sites (806 SAEs and 19,034 AEs from August 2000 to May 2007) the automated SAE summary was developed. It was designed to ensure timeliness and clarity in the complex process of AE review and reporting. METHODS: The AE and SAE case report forms (CRFs) as well as the automated SAE summary were developed within a database management system developed by the Data Coordinating Center (DCC) which allowed for web-based data entry at the DCC and 10 sites and offered immediate overall and site-specific reports accessible by the DCC, site, and NIH project staff. RESULTS: The automated SAE summary pulled data from multiple CRFs to create a succinct and informative summary and allowed for prompt and easy reporting to the regulatory agencies. The summary was adaptable to the needs of reviewers because of the availability of multiple search options.