November 8, 1996

VCH educational program stresses empathy for families

VCH educational program stresses empathy for families

Their stories are from the heart and often tragic.

They are stories of experiences that are far more powerful than words on a chalkboard.

More than 40 family members of children with chronic illnesses and disabilities have signed up to participate in a new Vanderbilt Children's Hospital (VCH) program which will link these family members with Vanderbilt undergraduates, graduate students, medical students and residents who are learning about issues related to children with chronic illnesses and disabilities.

Those involved in implementing the program, which begins this month, believe that medical students and other professionals who hear the families' stories will be better equipped to offer the best of care to these children and their families.

The program is called F.A.C.T. (Families As Classroom Teachers) and is offered through the Junior League Center for Chronic Illnesses and Disabilities at VCH. About 42 family members will be listed in a directory which will be mailed to instructors at Vanderbilt University as well as VUMC who teach courses pertaining to the care of children with chronic illnesses and disabilities.

When a class touches on issues relating to a condition listed in the directory, the professor can make a phone call to someone listed in the directory and have a family member available to speak to the class about personal experiences with the illness.

"We feel like these family members will have so much to offer students, especially medical students and residents," said Carol Kirshner, program assistant. "We hope the course instructors will utilize the directory we are sending out to them."

Dr. Rachel L. Mace, assistant professor of Pediatrics, said she has been involved in the education program at Vanderbilt University School of Medicine for several years, helping to coordinate the curriculum and working with residents to help them learn how to become good physicians.

"It's one thing watching a faculty member write on the chalkboard, 'do this or don't do that,' but it is not in any way as meaningful as having a family or patient tell us their experience.

"Our goal is to train doctors to know everything they need to know so they can take very good care of patients," Mace told about 20 of the family members gathered last week for orientation.

"We want to train them how to be lifelong learners, but we recognize there's a lot more to being a good doctor than just being smart and knowing all the facts. We want our medical students and residents here to learn how to care for people. We want them to have all the answers, to know all of the medicines and what tests to do, but we want them to be able to really care.

"Being a good listener and being available is every bit as important as knowing the right answers."

Mace said she is hopeful that families participating in the F.A.C.T. program will have an influence not only on undergraduate students at Vanderbilt, but also medical students, residents, and even physicians who have completed their training.

"You all have the unique ability to hold up a mirror to us and show us what we do that is good for families and what we should practice more of. But we also need to know the things that aren't good, things we do that might be hurtful to families, things that aren't useful at all. We look forward to your input. It's incredibly important," she told the group.

Laura Loyd, the mother of a six-year-old son diagnosed with autism, said she hopes the program can teach physicians the importance of compassion and listening.

"I've spoken to a class that included third-year medical students and they wanted to know what they could do to help a child with autism," she said. "Autism is not a medical condition. There are no pills for it and they're not going to find anything to help make it go away. But these are young people who really want to fix things.

"What they (health care professionals) can do is be kind to us and call us every now and then just to see how we're doing. Our kids may not often be sick and our pediatricians may not see us, but we're squirming out there in the world. We're getting those 'bad parenting' looks from people at the grocery when our kids fall apart. We rely on our sense of humor. If some of this stuff wasn't funny, it would be so incredibly tragic I couldn't go on."

Holly lu Conant Rees, the mother of a 13-year-old son with multiple disabilities, is another participant in the program.

Rees told the group that stage fright will "melt away" when they begin to speak to a captive audience about their children.

She said she is excited about the involvement of families in this program at Vanderbilt.

"It is based on the realization that families are the constant in their child's life. All families have strengths that are grounded in the unique practical and emotional expertise which rises out of our day-to-day parenting experience," she said. "The only knowledge we have is knowledge that can be earned in the trenches, in reality.

"Children don't live in a clinic or a classroom. A child's natural habitat is the family. We are the experts in our children's needs and disabilities. When professionals and service providers have access to our expertise, especially if you can catch them early on when they're just preparing for their professional lives, the quality of services our children receive can only improve."

For additional information, please call the Family Resource Center at 936-2558.