Anyone who has had a baby knows how stressful it can be to prepare for its arrival. But for parents who learn that their child will be born with a serious medical condition, the emotional and mental burden can be overwhelming.
That’s why with Masonic support, Anne Chevalier McKechnie, Ph.D., R.N., part of the U’s nursing faculty, and Matt Ambrose, M.D., part of the pediatrics faculty, are developing a program to give parents the support they need to get through this life-changing experience.
Preparing Heart and Mind™
“There are many questions that expectant parents have when faced with the news of a fetal anomaly, from what skills they’ll need to take care of their infant, to how to handle hospitalizations or serious surgeries,” says McKechnie. “It’s a very scary time for these families...for parents, there are not only high levels of depressive symptoms and anxiety, but sometimes traumatic stress that begins in pregnancy and continues for months or even years.”
The program that McKechnie and Ambrose are developing, called Preparing Heart and Mind™, includes an app specifically designed for pregnant individuals and their caregiving partners who learn that their fetus has a serious heart condition. Each week, the app, which they created based on research and clinical care with these parents, will offer several chapters with content for the pre- and postnatal periods. The program will also connect families with specially trained nurses on a regular basis through pre- and postnatal phone or video conferences. Additionally, nurses will have a dashboard to monitor patient interaction with the app content, which will help them determine how frequently and urgently to reach out to specific parents.
“Our goals with this program are to meet the emotional and cognitive needs of parents and, ultimately, help them feel confident in their ability to take on an expanded caregiving role as they enter this whole new world,” McKechnie explains.
Ambrose, a pediatric cardiologist at University of Minnesota Masonic Children’s Hospital who often sees up to a dozen pregnant individuals per day, believes Preparing Heart and Mind™ will significantly improve the care that his team is able to provide to their patients.
“I want to leverage this platform to improve my ability as a clinician to teach and prepare families for pregnancy and beyond in the context of a major fetal anomaly,” he says. “There is only so much I can accomplish in an in-person visit, and the incredible utility of an engagement tool in between clinical ‘touches’ will really further those goals.”
A new model of care
While telemedicine and virtual visits are not new to health care, using technology such as patient engagement apps to provide education to patients dealing with serious health conditions is just beginning to catch on.
“This is something that’s taking off in Europe, but also in the U.S. more and more, the idea that we can use technology to extend our reach beyond the clinic to support our patients and families during difficult times to improve health outcomes,” says McKechnie.
“Our approach, in particular, is novel in that we are using patient engagement that incorporates psychosocial content in addition to condition-specific education in the care program. We have also designed the care program to be moderate to high touch, with frequent nurse-family interaction.”
But because such care is new for high-risk patients and is being developed by stakeholders in very different sectors—academia, health care, and technology—there have been numerous hurdles for McKechnie and Ambrose to overcome in launching Preparing Heart and Mind™. From determining if the technology needs FDA approval, to modifying a nondisclosure agreement for testing the program with health care providers and parents, to making new considerations for testing in light of the COVID-19 pandemic, the list is extensive.
“Having an academic, clinical, and private sector partnership that involves health care for a vulnerable population is very difficult,” says McKechnie. “If we were just in the private sector or clinical world, I don’t think we’d need to do as much trouble-shooting.”
In spite of these challenges, the care program has been built, usability testing has started, and McKechnie and Ambrose plan to start piloting Preparing Heart and Mind™ with patients in 2020.
With strong collaborations in place with research partners from Texas Children’s Hospital and UCLA Mattel Children’s Hospital, the plan is to enroll nearly 100 participants in the clinical trial, including 48 pregnant mothers and their caregiving partners. Two-thirds of the participants will be in the intervention group that uses Preparing Heart and Mind™, while the other third will be in the control group that receives standard in-clinic care.
McKechnie and Ambrose are also gaining traction on a related project that would expand a Preparing Heart and Mind™ program focused on evidence-based human milk feeding. If all goes well, they hope to seek funding from the National Institutes of Health to conduct a clinical trial on how effective the program is in different languages.
“There are all kinds of possibilities,” says McKechnie. “We’re really excited about this!”
A lasting impact
Without the support of Minnesota Masonic Charities, Preparing Heart and Mind™ would not have come to fruition.
Masonic funds are fully supporting the pilot study, McKechnie explains, providing “the essential stepping stone we need to generate data-driven evidence that what we are doing can make a positive difference for families with these vulnerable infants.”
Even more important, says McKechnie, is that the program has real potential to make a lasting impact, especially since the tech company that she and Ambrose are partnering with has a keen interest in moving Preparing Heart and Mind™ into the market nationally, and possibly internationally.
“What’s unique about this initiative is that it’s not just a grant that will come and go with a project that comes and goes,” McKechnie says. “It has the promise of real staying power.”
And, ultimately, that staying power will affect patients for generations to come, says Ambrose.
“I’m incredibly grateful for the generosity and vision of Minnesota Masonic Charities for helping us grow this project to maturity,” he reflects. “Our goal is to ultimately improve parent, child, and family health through these interventions, and these will pay dividends over decades and decades.”