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

Abstract

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.

Keywords: Caregiver education; Family caregivers; Tracheostomy; Tracheostomy education.