Speedy treatment is essential to saving lives and preventing brain damage during a stroke. But the rapid pace of events also can leave patients and family members confused about what has happened and what to expect.
That's especially true for children whose parents or grandparents have a stroke, according to Mark P. Goldberg, M.D., professor of neurology and director of the Hope Center for Neurological Disorders at Washington University School of Medicine in St. Louis. Caring for a recuperating family member can make it challenging to find time to explain to kids the causes and effects of a stroke, which adults may only partially understand themselves.
"For kids, this can be very frightening," Goldberg comments. "The stroke patient's changes in mood and ability to communicate are scary to a child who doesn't understand that this is a manifestation of the stroke that often will get better. We looked, but there was very little available in the way of kid-friendly books or websites that could help."
Now a new resource is available for children through the Internet Stroke Center at Washington University School of Medicine, a stroke information web site founded and directed by Goldberg.
The narrator, a young girl named Janie, describes her experiences when her grandfather moves in with the family after a stroke. Included are brief, child-friendly explanations of what causes stroke; why stroke can lead to changes in mood, verbal and physical ability and behavior; and what can be done to reduce the risk of stroke.
As Janie watches her grandfather and her parents struggle with new limitations imposed by the stroke, she moves beyond her initial resentment of those changes and develops her own ways of helping her grandfather celebrate and cope with the ups and downs of recovery.
Ami Wilson, a student at Maryville University, wrote the story during an internship at the Internet Stroke Center under the mentorship of David Murray, editor of the Stroke Center internet site. Another intern and student at Maryville, Christine Warner, provided the watercolor illustrations that accompany the text. Jing Shi, a web designer for the center, combined the text and illustrations in a format that simulates the turning pages of a book.
In addition to "When Grandpa Comes Home...," the Internet Stroke Center contains a national registry of clinical stroke trials and extensive information for adult family members and patients on the causes of stroke, what to expect after a stroke and how to help patients during the recovery process.
"Adult caregivers need a tremendous amount of support too," Goldberg says. "For them, it's a huge amount of stress and change. And with 750,000 strokes occurring each year in the United States, there is an urgent need to make important information — such as how to prepare your home for the arrival of a recovering stroke patient — available in an easily accessible format."
The center is supported by grants from the National Institutes of Health, the American Heart Association and the McDonnell Center for Higher Brain Function.