Jennifer Belyea knows all too well the challenges facing families with complex health needs, the desperate need for information and support, the feelings of being overwhelmed and helpless.
Her teenage son, Cameron, has Angelman Syndrome, a rare genetic disorder that disrupts the nervous system and can involve frequent seizures. Serious ailments over the years have nearly taken his life.
Today, she works to aid families across New Brunswick much like her own as program coordinator for NaviCare/SoinsNavi, a navigation and support centre for families of youngsters with complicated and chronic health challenges.
Ms. Belyea is coordinating the centre directed by its two founders – Dr. Shelley Doucet, Jarislowsky Chair in Interprofessional Patient-Centred Care at UNB’s Saint John campus, and Dr. Rima Azar of Mount Allison University.
At the heart of the NaviCare service is the patient navigator Jennifer Splane. She advocates for children and their families while also serving as a resource for the care team.
A number of students and trainees are conducting research through the centre headquartered at the Saint John campus, including UNB’s first Purdy Crawford/Stephen Jarislowsky Postdoctoral Fellow in Health Policy, Dr. Alison Luke. She is overseeing evaluation of the centre.
Launched in January 2017, NaviCare/SoinsNavi is funded by a generous $750,000 donation by the New Brunswick Children’s Foundation – the largest single grant the organization has ever awarded.
The service, accessible through a toll-free telephone number, is free and available in both French and English.
Dr. Doucet, an assistant professor in nursing and health sciences at UNB, says the service helps by improving access to care that is timely and collaborative.
“NaviCare/SoinsNavi has the potential to significantly improve health care for children with complex health conditions in New Brunswick,” she says, “by ensuring that they have access to integrated collaborative care that is timely, convenient and meets their unique needs.”
