Parent perspectives on education to support hospital discharge for children with invasive mechanical ventilation

Children with invasive mechanical ventilation (IMV) often live at home, but for safety, parents must be prepared to assume primary responsibility for all aspects of their child's medically complex care. Prior studies have described discharge education programs, however often without perspectives of parents with lived experience transitioning home.

To describe parent perspectives on hospital-based education for discharging home a child with IMV.

A secondary qualitative analysis of 23 parent interviews between February 2019 to January 2022 on topics related to caring for a child with IMV. Each interview was coded independently and discussed to consensus. Data from codes related to parent education and training were analyzed to identify themes and sub-themes.

Parents of 23 children with IMV participated in the primary interviews a month after hospital discharge. Four main themes in the secondary dataset 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; (3) Learner characteristics: Parents are motivated learners who independently seek out knowledge; (4) Post-discharge education: Parents gain confidence in their expertise after navigating an emergency.

Parents who have transitioned from hospital-to-home describe sufficiently detailed hospital-based education; many felt trained as capably as nurses. However, parents experienced in-hospital training as inflexible and stressful.

Parents of children with IMV are eager learners but parent education is not always family-centered. Reforming the hospital learning environment to match parent needs will improve family experiences and training.