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Chronically Ill Kids Reach for the Camera

American children are struggling with two diseases that have reached epidemic proportions: asthma and obesity. With some current treatment strategies coming up short, doctors are struggling to find the best ways to deal with these serious health problems.

For doctors at Children's Hospital Boston, some solutions are turning up on videos. Doctors there have given their young patients video cameras, and the tapes are revealing a side of their lives doctors rarely see, but probably should. Madge Kaplan, from member station WGBH in Boston, reports.

For the past eight years, Dr. Michael Rich has been asking young people to create their own video narratives so doctors could better understand what it's like to live with a chronic disease. Through a project called Video Intervention/Prevention Assessment, Rich has sent 36 of his patients home with video cameras and an order to film everything -- their homes, their schools and their daily activities.

The information is crucial, he says, because whether patients improve, deteriorate or stagnate is largely dependent on what happens outside the doctor's office.

"We don't see how isolated they are, how it separates them from their friends, how they want to play basketball, but can't," he says. "Maybe they can't physiologically, but maybe they can't because they're fearful of something going wrong."

His patients, selected from diverse backgrounds, have created 700 hours of videotape focusing on their health problems. In addition to filming the environment around them, they interviewed friends and family members and talked to the camera themselves, often sharing their innermost feelings.

"With this disease (obesity) comes a lot of work," Tyrika Allen, now 17, said during a session she taped in her bedroom when she was 15. "I think sometimes the reason why I eat the way I eat is because either I'm mad or sad or people look me at me strange. It's like I'll eat even if I'm not hungry. If I'm hurtin', I'll eat the most, you know what I'm saying?"

Dr. Rich says a statement like this reminds doctors of the psychological causes and consequences of chronic health problems. They're a big part of what young patients are dealing with day-to-day and they're often out of view.

For asthma patients, the tapes help doctors identify what may be triggering attacks at a patient's home.

"It will catch things they may not realize are important elements," says Rich, "but when we screen it, we say, 'Oh my god, look at the cockroach,' or the dust, or the mold."

Tapes also revealed how often children were misusing their medications and to discover that home conditions weren't at all the way they were described during doctor's appointments. Whether it was a kitten or second-hand smoke, the camera captured it all, including one house that was filled top to bottom with plants and fish tanks.

"It was kind of shocking for me to see that entering into his house," says the boy's allergist, Dr. Lynda Schneider, "it practically looked like a forest there were so many plants. I'm sure I had asked him multiple times if there was mold in the home but for whatever reason we hadn't connected that this could be a problem with his asthma."

Dr. Schneider is now revising her strategies for getting accurate information about children's homes, realizing that young people often say what they think the doctor wants to hear. Parents, too, try to give the "right" answers.

"For example, you ask the question 'Does anyone smoke in the house?'" says Rich. "The kid says no, the mom says no, 'I only go outside.' But on video, she turns off the camcorder with a cigarette in her hand. So we see that."

While young adults with spina bifida and sickle cell anemia are the latest patients he's given video cameras to, Rich doesn't advocate patient videotaping as a routine part of medical practice -- it's too costly and time-consuming. Instead, he's using the tapes as teaching tools, hoping to startle other doctors into realizing that children and families have unique views about their ordeals that are medically relevant.

Copyright 2022 NPR. To see more, visit https://www.npr.org.

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