News from Upstate
Darryl Geddes 315 464-4828
Cystic fibrosis patients collect Beads of Courage
SYRACUSE, N.Y.— In 2010 Beads of Courage Program was launched at Upstate Golisano Children’s Hospital for pediatric oncology patients, sponsored by Maureen’s Hope Foundation. Having seen the success and great strides this program has offered the oncology children and their families; the program is now being launched for cystic fibrosis patients. Maureen’s Hope is a local nonprofit that offers practical support and assistance to people in the community facing the challenges of a cancer diagnosis or other life altering disease.
Cystic fibrosis, or CF, is an inherited chronic disease whereas a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Upstate Golisano Children’s Hospital cares for about 150 children with CF, with about five new patients diagnosed annually. During the past decade, most children have been diagnosed through newborn screening. Due to infection control issues, children with cystic fibrosis are not allowed to participate in camps or support groups involving interpersonal contact. Searching for another way to provide support and positive coping, the nonprofit anticipates the Beads of Courage for the CF patients to be an overwhelming success, just as it has been for the pediatric oncology patients.
The program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program, children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.
Throughout history, beads have symbolized courage and strength. Arts in medicine programs like Beads of Courage have been shown to have a positive emotional impact for parents of chronically ill children and the patients themselves. The beads help create a narrative for the child and family to communicate about their disease and the medical treatment they have to endure.
Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name and a Maureen’s Hope bead. Then, colorful beads, each representing a different treatment milestone are given to the child by their health care provider to add to their Beads of Courage collection throughout their treatment as determined by the Beads of Courage Bead Guide. Ongoing evaluation of the Beads of Courage program indicates that the program helps to decrease illness-related distress, increase the use of positive coping strategies, helps children find meaning in illness and restore sense of self in children coping with serious illness.
The program also provides something tangible the child can use to tell about their experience during treatment and after. In October, training was provided to the Upstate Golisano Children’s Hospital staff inclusive to the cystic fibrosis patients, which included nurses, child life specialists, nutritionists, respiratory aides, physicians, social workers and researchers. Susan Bertrand founded Maureen’s Hope Foundation as a tribute to her sister, Maureen, who succumbed to cancer in 2003 after a brave battle.
An oncology patient displays his Beads of Courage. Patients with cystic fibrosis being treated at Upstate Golisano Children’s Hosptial, now have a beads program of their own.
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