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Identifying Caregiver Needs for Children With a Tracheostomy Living at Home
Journal article   Peer reviewed

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Katherine Mai, Renee K Davis, Sue Hamilton, Candace Robertson-James, Sharon Calaman and Renee M Turchi
Clinical pediatrics, v 59(13), pp 1169-1181
Nov 2020
PMID: 32672065

Abstract

Adolescent Adult Aged Caregivers - psychology Caregivers - statistics & numerical data Child Child, Preschool Family - psychology Female Home Nursing - methods Home Nursing - psychology Home Nursing - statistics & numerical data Humans Infant Male Middle Aged Needs Assessment - statistics & numerical data Tracheostomy - nursing Tracheostomy - psychology Tracheostomy - statistics & numerical data Urban Population Young Adult
This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.

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Collaboration types
Domestic collaboration
Web of Science research areas
Pediatrics
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