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- Problems with some note content, such as incomplete or outdated information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 next?
We are now gathering ideas from families and clinicians on ways to make notes more accessible, readable, and useful for everyone.