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.

Pediatric and Neonatal Tracheostomy Caregiver Education with Phased Simulation to Increase Competency and Enhance Coping.

PURPOSE: Infants and children with medically complex needs depend on their caregivers for activities of daily life and specialized care of various devices they need to survive. Caregiver education is a primary goal in discharge planning to ensure safe, competent home care for these medically fragile children. Standard of care is bedside teaching. The Family Tracheostomy Program complements traditional training with a phased process of simulation. The purpose of this QA/QI project was to increase caregiver competency and decrease anxiety level for pediatric tracheostomy care through simulation training. METHOD: For two years, the pediatric and neonatal intensive care units trained twenty caregivers of new tracheostomy patients with the supplementation of simulation to standard bedside training. Using a five-point rating scale, caregivers completed pre- and post- tests for separate skills and scenario training sessions. RESULTS: Skills scores were hypothesized to increase after simulation training. In a small sample (n = 20), scores increased from pre-test (µ = 11.45, SD = 4.88) to post-test (µ = 22.6, SD = 2.01). This change was significant (t(19) = 10.78, p < 0.001). Scenario scores were hypothesized to increase after simulation training. In another small sample (n = 15), scores increased from pre-test (µ = 23.40, SD = 7.11) to post-test (µ = 28.73, SD = 2.31). This change was significant (t(14) = 3.78, p < 0.001). CONCLUSION: Simulation as a complement to bedside caregiver education increased caregiver competency and decreased anxiety levels for these samples. PRACTICE IMPLICATIONS: Organizations caring for neonatal and pediatric tracheostomy patients might consider providing additional support with a phased method of simulation as part of caregiver education.