Building clinician-parent partnerships to improve care for chronically critically Ill children: A pilot project

Objective: Multicenter pilot to assess feasibility, acceptability, and educational value of videos for families and clinicians regarding unique inpatient challenges of pediatric chronic critical illness. Methods: Videos were developed for 3 hospitalization timepoints: 1) chronic critical illness diagnosis, 2) transfers, 3) discharge. Parents of hospitalized children, and interdisciplinary clinicians, were recruited to watch videos and complete surveys. Results: 33 parents (16 English-speaking, 17 Spanish-speaking) and 34 clinicians participated. Enrollment was better for families than clinicians (78% vs. 43%). Video acceptability was high: families and clinicians endorsed verisimilitude of depicted hospitalization challenges for chronic critical illness. All families felt the videos would help other families, all clinicians felt they would help other clinicians. Families gained expectations for the hospital course, discovered resources for hospitalization challenges, and learned there are other families in similar situations. Clinicians learned to recognize chronic critical illness, and how families experience hospitalizations, transfers, and discharges. Conclusion: Educational videos about pediatric chronic critical illness were overall feasible, acceptable, and educational for hospitalized families and clinicians. Practice implications: Just-in-time hospital education about pediatric chronic critical illness is valuable to families and clinicians; next steps are to assess potential to reduce gaps in care of children with chronic critical illness.