By Katie Taylor, CCLS
My favorite go-to tool for parents is the classic white board on the wall of every hospital room. The family can see it, the staff can see it, and I encourage parents to use the white board to write down questions as they pop up. No need to wait for the team to return, go ahead and write the question down so you remember to address it with the team. I also encourage parents to take pictures, at least daily, of the white board to keep track of who was on the care team and what was happening that day.
Child Life Specialists help relay messages from the family to the care team and vice versa. They are skilled at identifying the question/concern and representing both parties on an equal playing field. While medical information should always come directly from the provider, Child Life Specialists make sure the message was received accurately.
The Child Life On Call app allows parents to track their child’s pain with the click of a button from the home screen, take notes about symptoms and doctor visits and includes prompted questions for the care team so that family can stay informed ahead of time. Encouraging the family to take advantage of a patient-focused-tool on a device that they already are using encourages families stay informed and engaged on their own terms.
On the app, parents can search procedures and find specific ways to advocate for their child as it relates to their experience. Being prepared ahead of time equips families with the ability to focus more on their child during the experience, rather than having their head spinning about what is happening next.
Another way to help families feel informed is by encouraging them to reach out to vetted, experienced organizations that specialize in their issue. See more about when and how to provide resources to families here.
