Like you, many families are interested in the straightforward findings of our research and how it affects their day-to-day lives. Here are the key takeaways of our recent studies and what’s happening next:
ACTIV
In this study, 75 parents of children in Complex Care Programs at the University of Wisconsin, Boston Children’s and UCLA, texted with us every two weeks for three months. Parents reported that the texting was simple. Additionally, parents predicted hospitalizations within two weeks for their child. We’re figuring out how to build on this, and how to have the clinical team connect to families based on text messages.
@HOME App Design
In the first study, a group of parents of children in the UW Complex Care Program met several times to design a prototype for an app to help with daily and g-tube care. The prototype was built for iPhones. Kinks are being worked out through testing and we hope to make it freely available soon.
@HOME App Testing
In the second study, 30 parents of children in the UW Complex Care Program used the @HOME app for a month. We are almost done and will report back soon.
Meds@HOME App Design
Growing from our earlier @HOME app design, in this study a group of caregivers of children in the UW Pediatric Complex Care Program met several times over the span of 6 months to re-design the initial @HOME prototype into an app that families can use to help keep track of their child’s medications and care routines. This app will be available on both Apple and Android phones in 2023.
Meds@HOME App Testing
In this upcoming study, over 150 families and other caregivers for children with complex medical needs seen at UW Health will be enrolled into a clinical trial where participants will use the Meds@HOME app for 6 months. We will study the effectiveness of this app with the goal of supporting parents and families with their child’s medication routines. This study will last take place through 2025, and we hope to make a version of the app publicly available after the study is done. We will update this with a link to the study’s webpage before long.
RE-PACT
This was a study that looked at an intervention named “RE-PACT” for kids with severe cerebral palsy. RE-PACT stands for Respiratory Exacerbation Plan for Action and Care Transitions. The intervention has three main activities: action planning, weekly text messages, and “Just-in-Time” clinical response. We held group discussions with family members and caregivers as well as healthcare professionals to learn about their thoughts and experiences using RE-PACT.
Check out a video describing RE-PACT here (o en español).
What did we learn?
- Families want to be able to adjust the intervention to match their needs and preferences – this means we need to identify their current skill set, knowledge, and confidence levels – and go from there.
- Action plans are only valuable tools if they are built well and kept up to date!
- Digital health tools (like apps and texting) should be easy for a family to add to their regular routines.
- Real-time clinical response is most valuable when it is part of a trusted physician-family relationship where the family caregiver is seen as an equal member of the care team.
What’s happening next?
Currently, RE-PACT is being used by a small group of families from our program. We will continue to learn about how this tool can provide value to both families and healthcare professionals. In the future, we hope to include this as a regular part of clinical care for families.
ReSET
This set of projects studies the experiences of families and caregivers of children with medical complexity from across the Midwest throughout the COVID-19 pandemic, testing, and school safety. Please see our full team webpage here.
A summary of one of our studies on family experiences with in-home COVID-19 testing is available here!
Bedside Notes: Giving Families Access to Clinical Notes during Hospitalization
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 didn’t 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 very 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.
Shared Plans of Care
Goal-setting
Updates to come.