Two years ago, Sabrina Barba was at BC Children's Hospital with her spouse, Simon and brand-new daughter, Billie.
They learned Billie has a complex heart condition that requires myriad hospital visits, consultations and treatments – which was especially daunting because the Barbas live in Revelstoke, about seven hours' drive away from their specialists at BC Children's Hospital in Vancouver.
"It often felt overwhelming," said Sabrina. "You're trying to comfort your child, understand her medically complex care needs, schedule appointments and listen to your specialists – it's so much to juggle."
After a couple months of care, the Barbas' cardiologist, Dr. Katey Armstrong, suggested they enrol in a pilot research project using texting to connect care providers with parents.
Simon and Sabrina with Billie
"Following a diagnosis of complex congenital heart disease, our families receive an overwhelming amount of information, not only about the diagnosis itself, but also about the prognosis, medications and management. This can be very daunting especially when the diagnosis has come as a shock," explained Katey.
"We needed a better way to provide support, information and communicate with parents through those often-challenging early months and years."
Katey and team at BC Children's Hospital Heart Centre were
researching how to support teen patients, using a secure two-way texting platform.
The Heart Centre team saw that communicating over text could have broader applications, and launched a research project to explore how texting might help parents and caregivers of medically complex babies.
Weekly, parents participating in the research get texts asking, "How are you?"
When they reply, a team of clinicians at BC Children's Hospital reads and triages responses, to address care concerns or questions, provide encouragement, or schedule in-person or virtual appointments if needed.
Suk and Dan Yer are also enrolled in the project, receiving texts to support care for their now one-year-old daughter, Coralie. "It was a very easy process to setup, and it's better than any prior tools we'd had," said Suk. "It's more convenient than phone calls, more efficient than routine check-in appointments, and easier than email."
The weekly text check-ins mean Suk and Dan feel comfortable and supported to reduce the frequency of their appointments. "Before texting, we scheduled regular check-ins every three months. Now, we are scheduled every six months, because the texting lets us give updates and ask questions weekly," explained Suk.
Suk and Dan with Billie
Especially during the COVID-19 pandemic, the texting helps tie the family and their care team together. "We feel much more connected to our doctors," said Suk. "Even when it's not an in-person checkup, we can send pictures and show Katey and the Heart Centre team how big our daughter is getting, how she's growing."
Texting has also made managing Billie's health feel more manageable for the Barba family. Sabrina can text questions and updates about Billie's health, and quickly get input, information and reassurance from their team of BC Children's specialists.
"For parents or caregivers of medically complex children, care can feel like a full-time job, especially if you always have to go through the secretary of a doctor's office for scheduling and calls," said Sabrina. "With texting, we can receive and discuss things like bloodwork results so much more quickly and easily."
Beyond just the logistics, Sabrina said texting feels qualitatively different than other clinical communication.
"Every time we text, it makes us feel like – even though we're so far away – the BC Children's care team knows who we are," explained Sabrina.
"There's just something about texting that's more manageable, casual, more personalized. It doesn't make everything feel such a big deal, because you can chit-chat, versus having to send a formal email or schedule a phone call."
When Sabrina, Simon and Billie have rushed to their local emergency department for urgent care, texting provides a crucial way to keep their BC Children's care team informed and ask key questions. "Texting is such a helpful tool for parents connect the dots in those situations where you're totally stressed out, and you could easily get overwhelmed," said Sabrina.
The BC Children's Heart Centre team is continuing to learn and build the evidence base for how to best support patients, parents and caregivers using innovative communications tools like texting.
Sabrina hopes that soon, more parents in B.C. will benefit from the texting, too.
"In those ER situations, it can be so stressful. Being able to text Katey and the team that we're at the hospital and share what's happening – it's a huge comfort because it feels like we're bringing our trusted care team with us, in our pocket. And we know they're just a quick text away."
BC Children's Hospital Research Institute is part of BC Children's Hospital and the Provincial Health Services Authority, supported by BC Children's Hospital Foundation and working in close partnership with the University of British Columbia. With more than 350,000 square feet devoted to research, our institute is the largest of its kind in Western Canada - in terms of people, productivity, funding and size.
Cardiac Services BC works to ensure all British Columbians have access to the best possible cardiac care by working with the health authorities to improve the way cardiac services are managed and accessed throughout the province. It also ensures quality access and sustainability within B.C.'s cardiac care system and promotes knowledge translation and system transformation.