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Building clinician-parent partnerships to improve care for chronically critically Ill children: A pilot project
Renee D Boss1, Katherine Maddox2, Dorte Thorndike3
1Johns Hopkins School of Medicine, 600 N. Wolfe St, Baltimore, MD 21287 USA; Johns Hopkins Berman Institute of Bioethics, 1801 Ashland Ave, Baltimore, MD 21287 USA.
Insights
Educational videos on pediatric chronic critical illness (PCCI) are feasible and acceptable for families and clinicians. These videos provide valuable just-in-time education, improving understanding of PCCI hospitalization challenges.
Area of Science:
- Pediatric critical care medicine
- Medical education technology
- Family-centered care
Background:
- Pediatric chronic critical illness (PCCI) presents unique inpatient challenges for families and clinicians.
- Effective communication and education are crucial for managing PCCI during hospitalization, transfers, and discharge.
- Existing educational resources may not adequately address the specific needs of PCCI patients and their families.
Purpose of the Study:
- To assess the feasibility, acceptability, and educational value of videos for families and clinicians.
- To develop and pilot video resources for key hospitalization timepoints in PCCI.
- To understand the impact of video education on expectations, knowledge, and resource awareness.
Main Methods:
- A multicenter pilot study involving the development of three videos for distinct hospitalization phases: diagnosis, transfers, and discharge.
- Recruitment of parents of hospitalized children and interdisciplinary clinicians to view videos and complete surveys.
- Data collection on video acceptability, perceived educational value, and participant learning outcomes.
Main Results:
- High acceptability of videos by both families (33 participants) and clinicians (34 participants).
- Families reported gaining expectations, discovering resources, and feeling less alone.
- Clinicians improved recognition of PCCI and understanding of family experiences during hospitalization, transfers, and discharge.
Conclusions:
- Educational videos are a feasible, acceptable, and valuable tool for educating families and clinicians about PCCI.
- Just-in-time video education can enhance understanding and potentially improve care for children with PCCI.
- Further research should explore the impact of these videos on reducing care gaps for children with PCCI.
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.
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