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Focused on the family

Sara Rosenthal is the Ellen Levi Zamoiski Doctoral Fellow and a Johnson & Johnson Community
Health Care Scholar Photo by Renee Fischer

In her second year of college, Sara Rosenthal learned that she had Type I diabetes. For many, the dietary restrictions and lifestyle changes that come with diabetes pose a serious challenge. For Rosenthal, Nurs '08, the diagnosis literally changed her life.

"I learned how important health care providers are - and particularly nurses - in terms of educating patients about their health," she says. That emphasis on patient control and responsibility in managing one's disease led first to a decision to attend nursing school, and later to her current nursing doctoral thesis work, finding ways to help parents make informed decisions in caring for critically ill newborns. It is, she explains, an area where good nursing can make a world of difference.

"There's very little training on how to provide good family-centered care," she says, "and even less for families making those types of critical decisions."

Studies have shown that parents of children in neonatal intensive care units often experience a sense of being cut off from care decisions regarding their baby. "They feel like they're not really the parent yet," says Rosenthal, a nurse in the Johns Hopkins Hospital NICU.

All too often, there is a tendency to place family members in the role of passive observers rather than active care-givers, but her research suggests ways to connect parents with their child's care.

"I try to get them as involved as much as possible by having them change the diaper, asking them questions about their baby, about their baby's personality, finding out, for instance, was the baby like this in utero?" she says. "Parents will tell me their baby was really feisty in utero and seems to be that way now."

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