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Teen Parents of Critically Ill Newborns Don't Get Severity of Illness

MEDIA CONTACT: Ekaterina Pesheva
EMAIL: epeshev1@jhmi.edu
PHONE: (410) 502-9433

May 02, 2009
Renee Boss_detail

Neonatologist Renee Boss


Pediatricians should ensure that parents fully grasp situation

New research led by the Johns Hopkins Children's Center shows that teen parents of critically ill newborns often do not fully grasp the severity of their baby's condition. The findings should alert physicians to find ways to better gauge parents' comprehension of the scope of their child's illness and its implications, which is critical for the parents' ability to make informed decisions about their child's medical care, investigators say.

"It really boils down to: Make two-way communication with parents a top priority. Period," said lead researcher Renee Boss, M.D., a neonatologist at Johns Hopkins Children's. "Ask probing follow-up questions to make sure they do get it. Ask them to summarize what they got out of the conversation and how they think it would affect their baby in the short term and in the long term."

Boss and her colleagues interviewed 45 mothers under the age of 21 whose critically ill newborns were being treated in the Johns Hopkins Children's neonatal intensive care unit (NICU). The investigators found that while most (97 percent) could accurately name at least one of their baby's diagnoses and two-thirds could name a treatment, among other details, they often did not realize the full scope of the condition, its severity and its implications. In fact, only 17 percent agreed with the healthcare providers about the seriousness of their infant's condition. Teens were also reluctant to ask questions when they did not understand medical terms, researchers found.

Parental age and educational level did not affect understanding, which suggests the real issue may be provider communication rather than parental capacity, researchers said.

Co-investigators include Pamela Donohue, M.D., of Johns Hopkins; and Robert Arnold, M.D., of Montefiore University Hospital, Pittsburgh, Pa.

Founded in 1912 as the children's hospital at Johns Hopkins, the Johns Hopkins Children's Center offers one of the most comprehensive pediatric medical programs in the country, with more than 92,000 patient visits and nearly 9,000 admissions each year. The Johns Hopkins Children's Center is Maryland's largest children's hospital and the only state-designated Trauma Service and Burn Unit for pediatric patients. It has recognized Centers of Excellence in dozens of pediatric subspecialties, including allergy, cardiology, cystic fibrosis, gastroenterology, nephrology, neurology, neurosurgery, oncology, pulmonary, and transplant. For more information, visit www.hopkinschildrens.org.