Two years ago, we conducted a pilot study at the American Family Children’s Hospital.
Families in this study received a tablet that allowed them to read the daily ‘notes’ written by their child’s doctors during their hospital stay. Notes included the admission and daily progress notes.
What did we learn?
There were benefits for families. The information in notes:
- Provided a recap of the “game plan” and goals of care
- Improved knowledge about their child’s plan of care
- Improved communication with the child’s care team, their child, and others who were not present
- Helped families feel more a part of their child’s care team
- Helped answer questions so that families did not have to rely on staff as much
- Built families’ confidence in the care team
There were also challenges:
- Some medical terms were hard for families to understand
- Confusion when information in the notes did not match in-person conversation
- Problems with some note content, such as incomplete or outdated information
- Some families experienced negative feelings, such as when the diagnosis was “bad” or unclear, or when medical terms were confusing
It is important to note that families felt the benefits of having the notes far outweighed the challenges. All of the families wanted access to notes during future hospital stays.
What’s happening now?
- Now, we are conducting a multisite randomized controlled trial to see if the Bedside Notes intervention increases the frequency of families accessing their child’s medical notes. We also want to see if the intervention leads to families identifying more safety concerns and experiencing decreased anxiety by the end of their child’s hospitalization.
- Families enrolled are asked to complete two surveys, one at the time of their child’s admission and one at the time of their child’s discharge.
- Half of the families receive access to their child’s medical notes on a bedside tablet. They also watch an informative video about notes and receive a handout with the definitions of common terms they may encounter. The other half of families receive the normal standard of care.
- This study will take place at the American Family Children’s Hospital (Madison, WI), Seattle Children’s Hospital (Seattle, WA), and Children’s Hospital Los Angeles (Los Angeles, CA).
- We will enroll 200 families at each site, or 600 families total.
- We will also interview families and hospital staff to learn more about their experiences.
- You can learn more about the study’s protocol here: https://shmpublications.onlinelibrary.wiley.com/doi/10.1002/jhm.70155