Ali Barbieri occupies just a sliver of her grown-up bed at the Johns Hopkins Children's Center, her 5-month-old legs suspended in a miniature traction rig that holds in place the hips she dislocated at birth.
Most days Ali's mother, Natalia, sits with her all day, caressing her, distracting her with the toys that share her bed, trying to introduce her to solid foods. Barbieri knows just how well her daughter is sleeping, eating and feeling.
So it makes sense to involve her in Ali's care - and to have her on hand when the doctors do their early-morning rounds. The large circle of white coats has traditionally stopped in front of each child's room to discuss her case, her prognosis and the plan of care for the day. But the circle didn't include parents.
Hopkins and other teaching hospitals are changing that by inviting parents to be full participants in their children's medical rounds each day - to hear the full truth about how their children are progressing and to jump in with questions or comments when they have something valuable to ask or add. Parent involvement, according to those involved, is improving the care that professionals provide.
"The parents know the children better than anyone else. They can say, `Something's not right,'" said nurse Melissa Roman, who helped establish these so-called "family-centered rounds" on the infant and toddler floor at Hopkins in March.
"What the families said to us is, `We hear what you're talking about anyway, so you might as well involve us,'" said Loretta Wall, a social worker who chairs the children's center's patient- and family-centered initiative.
"We have to no longer view them as visitors. They're our partners. They need us and we need them ... to achieve the best outcome for their child."
Medical matters are still the portfolio of the doctors and nurses. Parents don't have medical degrees and don't know how to diagnose their children or what the best treatments should be.
But professionals can and should call on parents to help make decisions based on options provided to them, said Dr. Stephen E. Muething, a pediatrician at Cincinnati Children's Hospital, a pioneer in family-centered rounds.
"In the old days, it was more, `You're the doctor, you decide,'" Muething said. "Families want to be involved in decisions. It switches the control."
