As physicians in the Johns Hopkins Hospital Neonatal Intensive Care Units (NICUs), Renee Boss and Sara Muñoz--Blanco know their patients’ outcomes following discharge are often directly linked to effective communication with parents. Making the transition from hospital to home can be overwhelming and frightening for any parent, and even more so when the parents can’t effectively ask questions or receive information because of a language barrier. 

To help address this problem among Latinos ­— the fastest-growing ethnic group in both Maryland and the United States — Boss and Muñoz-Blanco collaborated with the Dracopoulos-Bloomberg Bioethics iDeas Lab at the Johns Hopkins Berman Institute of Bioethics to develop “Nos Vamos a Casa” (“We Are Going Home”), a novel web-based interface that enables patient families and their doctors to overcome barriers of language and literacy to exchange vital information. 

“We care for a substantial number of Latino Spanish-speaking children and their families across our health care system who often have medical complexity and ongoing health care needs after NICU discharge,” says Boss, the Rembrandt Foundation Professor of Pediatric Palliative Care.

“Our tool will increase a family’s knowledge about their child’s medical big picture, being a NICU parent, and preparedness of anticipated challenges after NICU discharge,” she says. “We believe it will help improve communication between families and medical teams during their admission, and promote family-centered care, as well as better prepare families for life at home.”

Available at the patient’s bedside, “Nos Vamos a Casa” contains a question prompt list (QPL) that Boss and Muñoz-Blanco developed in a pilot study by conducting focus groups with NICU and primary care providers, as well as Spanish-speaking parents of NICU patients. As parents review the QPL, accessible in Spanish in both print and audio, they can flag the questions they need to have addressed. Members of their care team, including doctors, nurses, case managers and social workers, then access that list of highlighted questions electronically, in either English or Spanish, and use it as a guide for discussion with parents. 

Earlier this year, families and medical teams at the Children’s Center began using “Nos Vamos a Casa.” Preliminary data is very promising. For example, almost 60% of families reported discussing website questions with their baby’s medical team and reported initiating those conversations. All families reported the website content helped them cope with being a NICU parent, thinking of and asking questions to the medical team, and preparing for life at home.

Research is ongoing. Boss and Muñoz-Blanco hope to share the tool with families and NICUs across the country, at first in Spanish and then in other languages as well.

“We’re doing implementation science,” says Boss. “It’s not just studying patients and families, it’s doing medical research that will benefit those patients and families and then making sure it’s available to them.”