Registered Nurse Ann & Robert H. Lurie Children's Hospital of Chicago; Rush University Chicago, Illinois, United States
Background: Children with invasive mechanical ventilation (IMV) often live at home, but in order to do so safely, parents must be prepared to assume primary responsibility for all aspects of their medically complex care. Therefore, parent education and training are critical components of preparing a child for discharge from the hospital with a ventilator. Although prior studies have described detailed discharge training programs, the perspectives of parents with lived and recent experience transitioning home are needed to optimize future education and interventions. Objective: To describe parent perspectives on hospital-based education when anticipating discharge home with a child with IMV. Design/Methods: This study is a secondary analysis of 23 parent interviews completed between February 2019 to January 2022 on a variety of topics related to caring for a child with IMV. Each semi-structured interview was coded independently and discussed to consensus by two coders using MAXQDA for qualitative data management. Study investigators came to consensus on main and sub-themes. This analysis focuses on parents’ perspectives on the education and training they received. Results: Parents of 23 children with IMV participated in semi-structured interviews that occurred a month after hospital discharge. Children were 35% Non-Hispanic White, 39% Non-Hispanic Black and 26% Hispanic. Seventy percent of children were survivors of prematurity and all children utilized a tracheostomy, ventilator, and feeding tube. Four main themes were identified: (1) Training context: The hospital can be a stressful and difficult learning environment, (2) Training characteristics: Parents receive thorough training from interdisciplinary providers during their child’s hospitalization to prepare for care at home, (3) Learner characteristics: Parents are motivated and active learners who independently seek out knowledge to fill gaps, and (4) Post-discharge education: Parents become even more confident in their skills and expertise after navigating an emergency at home.
Conclusion(s): Parents of children with IMV who have transitioned from hospital-to-home describe thorough education; many felt trained to perform as capably as nurses. Participation in critical events in and out of the hospital solidified training and competency confidence. However, parents experienced in-hospital training as inflexible and stressful. Opportunities for improving family-centered care exist in these critical training programs. These parent perspectives may help to reform the hospital learning environment for training for the care of children with IMV at home.
