Navigating a child’s medical journey can be difficult on any parent. But for a mother or father not familiar with the U.S. healthcare system or whose first language isn’t English, the journey is much more complex.
Just ask one of the attendees at Fuente de Luz (“Fountain of Light”), the monthly informational group for Spanish-speaking families at Boston Children’s Hospital. On the first Tuesday of every month, around eight to ten Latino mothers — and occasionally fathers — get together to share their experiences and receive support from each other. There are hands to pass tissues and hold onto others; una familia formed from shared experiences.
Educating and empowering parents
Knowing first-hand that foreign-born parents have to work harder to understand the U.S. health care system, program coordinator Cecilia Matos and parent Sara Diaz — both originally from Latin America — came up with the idea to host a monthly group for Spanish-speaking families.
“When a parent knows how to navigate the system, the child benefits,” says Sara, whose 22-year old son, Nicolas, has Down syndrome and has been cared for at Boston Children’s for 18 years. “The key is to educate and empower parents so they can advocate for their kids.”
A thoughtful agenda
Cecilia, Sara and Esterlina Macinnes, Boston Children’s Family Partnerships Coordinator, work with other parents and social workers to select the topics for the meeting. Recent conversations have focused on sibling support, confronting difficult situations and changes in health care.
“We identify the needs and concerns of our Latino families and create projects and programs to fulfill those needs,” says Esterlina. Originally from the Dominican Republic, Esterlina and her family live close to Boston Children’s, where their 5-year old son, Ian, receives care for Lowe syndrome, a rare genetic disease that affects the brain, kidneys and eyes.
“We’re really good at telling parents what’s important to know,” adds Cecilia. “Now the parents can tell us what’s important to them.”
A community formed from a shared experience
But the most valuable learning here is about the power of relationships. “The workshops and talks aren’t as important here as is the opportunity to share stories, sorrows and concerns,” says Esterlina. “Every meeting is different, but we’re always focused on giving each other support.”
Marlenne, whose three children are patients at Boston Children’s, finds Fuente de Luz to be incredibly helpful. “The group teaches me about how to take care of my children,” she says. “Each meeting is something different and every mother brings her own advice and experience to the group. Everyone here has helped me so much and they’re all doing great things.”
This feedback is exactly what Cecilia was hoping for when she and Sara started the support group. “This is a dream that I’ve had for many years,” says Cecilia. “To be there to guide our Latino families when they’re lost.”