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Stanford Report, November 20, 2002

Doctors team with parents to tackle eating disorder


Anna doesn’t like turkey and she won’t eat potatoes. Or bread. Or vegetables. But she’ll be an uninvited, and perhaps unnoticed, guest at tens of thousands of Thanksgiving feasts across the country — maybe even yours.

Anna’s not a real person. She was evoked by a young girl who was explaining in an essay what it feels like to be "inhabited" by anorexia nervosa, a life-threatening eating disorder.

Booting Anna out of the dining room, and out of a sufferer’s life, is a high-stakes game that requires the participation of the whole family. But ongoing research by Pamela Carlton, MD, indicates that parents sometimes feel overwhelmed and confused by their newfound jobs as bouncers.

"Parents are extraordinarily frustrated that they can’t get their kid to eat," said Carlton, a staff physician at Lucile Packard Children’s Hospital’s eating disorders program. "We’ve found that although we’re taking care of their kids, they’re not learning what they can do in the hospital and at home to help their children."

Carlton is spearheading a new effort to teach parents about the medical, psychiatric and nutritional treatment their child will receive as an inpatient of the program.

The eating disorders staff will also help parents manage their child’s condition at home after discharge and will organize weekly support groups for parents of children with eating disorders, a first for the area. The support groups, led by a social worker, may also invite speakers to address common parental questions.

The plan arose from two focus groups Carlton conducted a year ago, as well as a recent survey of 97 families of Packard Children’s Hospital eating disorder inpatients.

Carlton asked the parents of children who had been hospitalized for anorexia, bulimia and other eating disorders to list concerns they had about their child’s disorder and its treatment. She found that parents frequently underestimate the severity of the threat to their child’s health.

"What was very interesting to us," said Carlton "was that hospitalization was the first time the parents realized how sick their kids actually were." About 10 percent of anorexia patients will eventually die from complications of their disease. "This is worse than many kinds of cancer," said Carlton. "We want parents to realize how serious the situation is and why we are taking it seriously. They may think ‘she seemed fine when I brought her into the clinic, so it can’t really be that bad.’ "

Carlton also found that parents are often confused about the rationale and enactment of their child’s treatment plan and feel anxious about their ability to care for their children after discharge.

Within the focus groups the parents were unanimous in their desire to have more information about all aspects of their child’s disease and treatment, and both groups asked to stay behind after the session to compare notes with each other about their experiences.

"One thing that really frustrates parents is that they have no idea how to feed their child at home," said Carlton. "They’re looking at the nutritional guidelines and asking ‘What does this mean? What is a serving?’ "

As part of the new education campaign, every parent will receive a binder of information about eating disorders and the types of treatment their child can expect to receive. After reviewing the information, the parents will meet weekly with Carlton for two hours to discuss the material.

Parents will learn, for example, that children who are less than 75 percent of their ideal body weight or whose heart beats fewer than 50 times a minute have a drastically increased risk of sudden cardiac death even though they may look fine.

They will be instructed to look for danger signs, including fainting and blue hands or feet that may signal a medical emergency. And they will meet Anna, described in an essay by the young patient. Finally, the binder includes basic information about food groups and menus for balanced, nutritionally complete meals to feed their child.

In addition to the written information and the weekly question-and-answer sessions, Carlton hopes to set up a resource room for parents at the eating disorder program’s future home at El Camino Hospital.

The room will likely offer educational materials and computer terminals with lists of reputable Web sites about eating disorders.

Carlton plans to evaluate the effectiveness of the new program by surveying parents upon admission and again when their child is discharged. "If their knowledge and comfort levels about eating disorders and their treatment don’t increase, then we’ll adjust the program to better meet their needs," she said.

New anorexia therapy makes family a key to recovery (11/15/00)