To improve home monitoring engagement, treat people as partners
Taking a newborn home is an exciting and often scary time for parents. Add in that your baby has a heart condition and has needed surgery before they were even a month old, and the stress can be incredible as you leave the hospital setting and go home. Single ventricle nurses can help parents while they are at home in the first few months of life by proactively monitoring the infants.
Since we started using our home-monitoring app in March of 2014, none of the babies with single ventricle (SV) heart disease in our Cardiac High Acuity Monitoring Program (CHAMP) has died at home – during what is normally a high-risk period. During the interstage, typically the first four to six months of the baby’s life, as many as 20 percent of SV infants don’t survive.
The positive outcomes of CHAMP in recent years wouldn’t have been possible without the engagement of the babies’ parents.
After an SV infant’s first surgery, we ask parents to enter data such as heart rate and oxygen saturation readings into our award-winning CHAMP app on a Microsoft Surface. That data is instantly analyzed in a secure Azure cloud and we’re alerted if any of their baby’s numbers are outside the ranges we’ve set.
We also ask parents to send us a 15-second video of their baby each day. From the video, we can see what the infant’s coloring looks like, if he or she is happy or not feeling well, and count his or her breathing rates.
The technology we’re using now not only captures more information more often, it’s also easier to use than our old system when parents had to document their baby’s data in a three-ring binder and call us weekly with a summary. But it’s still a daily commitment that we’re asking of parents who are going through the emotional strain and stress of having a highly fragile newborn — along with all of their other daily demands.
So we’ve put a lot of thought into how best to keep these parents engaged.
The CHAMP team is not a club any parent ever wants to be part of. We acknowledge this from the beginning and work to understand how we can create the best possible experience with home monitoring as they go through this very difficult time in their and their babies’ lives.
One of our core guiding principles is to treat parents as partners. As nurses, we know that successful home monitoring starts with how we educate people before we send them home with the tools we want them to use — but it doesn’t end there. We’ve learned that developing ongoing, give-and-take relationships with families is crucial.
In my next blog, I’ll share my top tips for how to foster partnerships with those you seek to engage in home monitoring based on what we’ve learned in our CHAMP program. Stay tuned for that soon.
In the meantime, please let the nurses’ blog team know if you have any questions or comments — or if you have your own patient or family engagement success story. You can reach them via email, Facebook, or Twitter.
Read more in this series from Lori…
