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Navigating a New Normal: A Mixed-Methods Study of the Pediatric Tracheostomy Parent-Caregiver Experience
Laine DiNoto1, Adrianne Frankel2, Taylor Wheaton2
1Department of Otolaryngology and Pediatrics, University of Rochester Medical Center, Rochester, NY 14642, USA.
Children (Basel, Switzerland)
|July 29, 2025
Summary
Parent-caregivers gain confidence in tracheostomy care with experience, but need more support for medical emergencies. Education is key to their new identity and family well-being.
Area of Science:
- Pediatric Nursing
- Family Caregiving
- Medical Technology
Background:
- Caring for a child with a tracheostomy tube presents unique challenges for parent-caregivers.
- Understanding their experiences is crucial for developing effective support systems.
Purpose of the Study:
- To explore the lived experiences of parent-caregivers managing a child's tracheostomy.
- To assess the self-efficacy of these caregivers in performing tracheostomy care.
Main Methods:
- Utilized surveys and semi-structured interviews with parent-caregivers.
- Analyzed survey data using descriptive statistics.
- Conducted thematic analysis of interview transcripts.
Main Results:
- Parent-caregivers reported increased self-efficacy in routine care over time.
- Triage of medical status changes remained a challenge.
- Identified themes included identity shifts, continuous education needs, psychosocial support, and establishing normalcy.
Conclusions:
- Parent-caregiver experiences highlight significant psychosocial needs and challenges.
- Further research into lived experiences is essential for supporting families with medically complex children.
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