Karen Cheng, Ph.D., Estrellita Co-Principal Investigator, University of California, Irvine
About two months ago, we did our first baseline interview. So far, four parents have started in the intervention group (and have received mobile devices with our app) and two parents in the comparison, or control, group. Two more participants are scheduled to start the study by the end of this week.
So far, our intervention participants have given us very positive feedback that they enjoy using the Estrellita system. The two families with the sickest babies seem to be the most consistent in recording their observations of daily living (ODLs), and one of those families even reported using their baby’s ODL data during an appointment with a specialist.
Not surprisingly, most of our participants identify themselves as early adopters of new technology — even if they cannot afford (and therefore do not have) the newest technology. They report being drawn to this study for the opportunity to use the latest technology.
One interesting discovery was that parents were concerned about weighing their babies when the weather became colder. We were not seeing weight data come in regularly for most of the babies, and we gently reminded parents to let us know if they were having any trouble with the scales. One parent finally responded, explaining that her baby had been sick and she was reluctant to put him naked on a cold scale. An EDAC case manager contacted the parent and explained how to zero out the scale with a blanket and then put the baby on the scale. Problem solved, and weight data came in the next day!
As difficult as recruiting has been, scheduling the interviews has been just as difficult and maybe even more difficult. I spent much of last Friday afternoon in my car in the parking structure of CHOC Children's Hospital, waiting for a participant to return from an unexpected errand for our scheduled interview. My colleague, Karen Tang, spent all of Friday afternoon in a parking lot in another part of Orange County, waiting for a different participant. That participant missed her scheduled interview as well.
I look forward to our upcoming mid-study interviews, and hope to learn more about parents’ experiences with the Estrellita system and their overall strategies for managing their children’s health information in the midst of such hectic lives.
Creative Commons photo by biblicone.