188 - A mixed-methods study: What are the educational needs and challenges experienced by caregivers of pediatric patients with tracheostomies?

Poster Number: 188
Publication Number: 188.143

Adrianne Frankel, Golisano Children's Hospital at The University of Rochester Medical Center, Pittsford, NY, United States; Laine E. DiNoto, Golisano Children's Hospital at The University of Rochester Medical Center, Rochester, NY, United States; Desirae Smith, Golisano Children's Hospital at The University of Rochester Medical Center, Ontario, NY, United States; Christina Dalo, Golisano Children's Hospital at The University of Rochester Medical Center, Rochester, NY, United States; Teresa Harrington, University of Rochester School of Medicine and Dentistry, Webster, NY, United States; Taylor Wheaton, University of Rochester Medical Center, Syracuse, NY, United States; Kimberly Buholtz, Golisano Children's Hospital at The University of Rochester Medical Center, West Henrietta, NY, United States; Kathryn Palumbo, University of Rochester School of Medicine and Dentistry, Rochester, NY, United States; Rita Dadiz, University of Rochester School of Medicine and Dentistry, Rochester, NY, United States

Background: Pediatric tracheostomy (trach) patients are a complex population with high morbidity and mortality, yet there is no standardized training for caregivers. Limited studies have explored caregiver preparedness and experience after transitioning to the home environment.

Objective: To explore educational gaps, skills, preparedness, and challenges experienced by caregivers caring for children with a tracheostomy.

Design/Methods: We conducted a single center, mixed-methods study, surveying and interviewing caregivers of children who had a tracheostomy tube placed during 2015-2020. We enrolled participants via convenience sampling until attaining thematic saturation from interviews. Caregivers completed an anonymous survey via REDCap, using a 6-point Likert scale to rate their preparedness and self-efficacy performing 13 tracheostomy care skills. Caregivers participated in an audio-recorded interview regarding their in-hospital training and experiences caring for their child at home. We used descriptive statistics to present survey data. Interview transcripts were transcribed verbatim and analyzed using grounded theory to identify and verify emergent themes.

Results: Survey results revealed that caregivers (n=10) felt more prepared to perform routine daily care (e.g., changing trach dressing, suctioning, etc.) than assess for signs of infection, respiratory distress and trach tube dislodgement at hospital discharge (Table 1). Their confidence of performing these skills improved with experience at home (Table 1). Data analysis of interviews (n=9) revealed significant themes pertaining to educational gaps and the challenges of caring for children at home: (1) dual caregiver roles as learners and teachers, (2) caregivers as employers and supervisors of private duty nurses, (3) variable in-hospital expertise, resources and training, (4) lack of simulation-based training of home emergencies, (5) staff regard of patients as diagnoses rather than children, and (6) lack of a caregiver-to-caregiver support system.Conclusion(s): Caregiver experiences underscore the educational needs and ways healthcare professionals may better support caregivers caring for tracheostomy-dependent children as they transition from the hospital-to-home environment.  Future directions include developing a standardized approach to in-hospital training and community-based resources to provide ongoing caregiver support.
Caregivers’ level of preparedness and confidence of performing tracheostomy care
Themes and interview excerpts of educational gaps and caregiver challenges of caring for children with a tracheostomy tube