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Delaware Amps Participate in National Research Study
"You think you've had it rough until you sit down with someone who has had it rougher," says Charlie Ulbinsky, of Elsmere, Delaware, but he's no armchair philosopher.
As a member of the Amputee Support Group of Delaware, Ulbinsky and his fellow members are out and about, building momentum in their communities for broader awareness and access to services for amputees.
Their activism and that of their founder, Gloria Price, drew support group members to participate this spring in the Promoting Amputee Life Skills (PALS)
research study sponsored by the Centers for Disease Control and Prevention in Atlanta.
PALS among us
The Amputee Coalition of America is collaborating with Johns Hopkins Bloomberg School of Public Health and the University of Washington in this
one-year, first ever nationwide study The Amputee Support Group of Delaware is one of 49 support groups to participate in PALS.
| "The need for
medical and healthcare professionals to re-evaluate the current system
of managed care managed amputees is great. "
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Some 250 adults, ages 18 and older, who are living with limb loss, have enrolled. Groups are randomly assigned to participate in their regularly scheduled/ formatted support sessions (over three months) or to be part of a 10-week self-management course to learn skills that build on individual strengths. Study group meetings began in March 2005.
Telling it straight
"The need for medical and health care professionals to re-evaluate the current system of managed care for amputees is great," says Price, a 60-year-old from Wilmington who had her right leg amputated below the knee in 2001 after an auto accident. "When you become an amputee, it's fight or flight, and every aspect of one's life is affected."
Price believes managed care should also include psychological care, access to resources, and prosthetic education to give the amputee the best possible chance for a complete recovery.
"Those of us in the support group are still fighting through the experience, having to learn mostly on our own how to manage our personal lives." She facilitated group meetings for the PALS study, following the self-management model. The group met on Thursdays at the Center for Rehabilitation at Wilmington Hospital.
Volunteering was second nature
Christiana Care Occupational Therapist Diane Bristow, COTA/L, volunteered for training to help lead the PALS sessions. She spent three days in Las Vegas, learning her role, and two to three hours every week of her personal time, meeting with and guiding the group during the two-month program.
"I enjoy working with amputees, and the PALS study gave me an opportunity to contribute in a somewhat unique way," Bristow says.
"I think PALS has helped put the focus on issues of empowerment and socialization that are so important to all people but particularly persons learning to live with a long-term illness or disability."
As a trainer, Bristow serves as an educational resource, but participants are encouraged to discuss and strategize among themselves about topics assigned each week.
"The program is really about teaching self-management skills to help participants take control of their health and well being," Bristow explains. "The participants also network with one another and help each other to problem solve individual challenges. They are the experts."
Topics for discussion included managing limb loss related pain, increasing positive mood and developing coping skills; and communicating with your health care team. Participants also learned to improve networking skills as well as interactions with family and friends.
Spreading the word
"We're all unique individuals from different backgrounds who come to the table every week," Ulbinsky adds. "None of us is afraid to voice an opinion." Besides that he says, "The camaraderie is great, and I, personally, have benefited a great deal from my involvement."
Ulbinsky had both legs amputated in December 2003 as the result of complications following an abdominal aneurysm. He hopes study investigators will publish the collective experiences and information presented during the group discussions so that amputees everywhere can access it prior to or after surgery. "I think we all have important knowledge to share," he says.
Price agrees. "The value of the information learned during the PALS Study would be immensely beneficial to an individual who has just become a new amputee," she adds. "The Amputee Support Group of Delaware will be working very actively and diligently to get this information implemented as part of our medically managed care."
Currently the Amputee Support Group of Delaware is working on several legislative issues important to amputees. These include helping to draft a Prosthetic Health Care Parity Law for Delaware and securing Senate approval for Delaware State Senate Bill 3, the Personal Mobility and Vehicular Navigational Access Act.
Reprinted with permission from the Christiana Care Health System 'Rehab Report'
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