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May 2006
Feature Story
Working toward true family-centered care
Involve and consult with mom, dad, siblings and other family members in the care of a child patient? Of course! It seems natural, easy, a given.
Being open to input and questions from family members seems simple but is a concept that's taken a long time to understand and embrace, says John Sanders, administrator of MUSC's Children's Hospital. And it will take some time for the hospital to achieve true "family-centered" care.
"The way that the practice of medicine was set up in the past was not necessarily focused on having families involved," says Sanders.
The term "family-centered care" was a phrase used in the past to describe a physical environment created to make families feel comfortable.
"Yet the idea has evolved and deepened to mean that families are involved in the care of and decision-making for the child patient while he or she is in the hospital," says Sanders. "We now know that we can learn so much more than we previously realized from the families of our patients."
This parent/family involvement encompasses many things. One of the most visible is the Family Advisory Council. This advisory group is made up of parents who have had a child in the hospital in the past, as well as those parents who, due to conditions such as diabetes, sickle cell or asthma, visit the hospital on a regular basis.
"We share with them our plans for policies, explain how we want to interact with families, and they keep us on the right path," explains Sanders.
Family members of Children's Hospital patients also serve on committees for hospital operations and take part in task forces, helping the hospital plan for new units, new services and programs for children.
For example, families who have had babies in the hospital's Neonatal ICU are actively helping the hospital develop and fine-tune a new NICU.
"They're looking at design concepts and offering advice and feedback about what they think will work best for patients and families," says Sanders.
As the Children's Hospital begins to plan its new emergency department, Sanders says it will use the same approach, reaching out to past and present patients and their families to learn what works and what doesn't in an ER. Similar contributions by patient families have resulted in the creation of a booklet that provides information on the hospital and what to expect, and helps parents tracks treatments for kids who visit the ER or hospital often.
"These parents know the hospital protocol, and having these booklets allows everybody to be on the same page about the child's treatments and medical history," explains Sanders. "It keeps us from having to reinvent the wheel each time the child comes into our facility."
Soon parents and other family members may even be involved in doctor rounds. "We're currently trying to work out a way that families can contribute to rounding activities with attendings and residents in the morning," says Sanders.
The dynamics of a teaching hospital--with a steady and inquisitive stream of nursing and medical students, residents, and all kinds of disciplines coming into patient rooms-does add an extra challenge for parents, admits Sanders.
"But in the long run, we know we're preparing these students to practice family-centered care when they come out of their training," he explains.
Giving parents a feeling of control is essential.
"Often parents feel they're giving up their child when they come into the hospital," explains Sanders. "It can be intimidating, and family members might not feel comfortable asking or questioning staff. But we're trying to teach physicians and parents that that's exactly what we want them to do. We want to make sure parents understand that we need them to ask--and we need them to answer questions, too.
"By being involved, by knowing they can say and ask what they need to-that returns the feeling of having some control over the pathway of care being provided to their child," Sanders says. "And that helps everybody involved.
"The bottom line is better communication between nurses, physicians and parents," Sanders continues, "which results in us being able to treat the child in the best way possible.
"No matter how much you think you know, nobody knows a child better than his parent…how he's going to react to medicine, treatment, approach - some of those things our staff would never be able to figure out on their own," states Sanders. "Family members provide vital information that improves care."
As the Children's Hospital continues to work towards providing care not just for the child but also for the family, Sanders says it hopes to become a model for the rest of MUSC.
"We are in the beginning stages of really being able to provide family-centered care," he says. "We're not there yet, but we're on the journey, and it's an exciting time of change, especially in the way we provide education to our students and residents."
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