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 this video describing RE-PACT (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.