image: A woman sits in a wheelchair next to a male personal care assistant at an outdoor table surrounded by greenery. Both are smiling widely.
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Credit: Kessler Foundation
East Hanover, NJ – August 15, 2023 – “Understanding Spinal Cord Injury: A Course for Personal Care Assistants,” a new interactive online course designed to enhance the training of personal care assistants (PCAs) for individuals with spinal cord injuries, was unveiled today at Paralyzed Veterans of America Healthcare ( PVA) Summit + Expo at Renaissance Orlando at the SeaWorld Hotel in Orlando, Florida, by Jeanne Zanca, MPT, PhD, FACRM, Assistant Director of the Kessler Foundation Spinal Cord Injury Research Center and Chair of the Foundation’s Institutional Review Board . The course, the first specifically designed to familiarize personal care assistants with spinal cord injuries, is available for free at https://www.kflearn.org, the Foundation’s site for educational and training resources for consumers and professionals.
Spinal cord injury is a life-changing condition that creates a need for hands-on help from other people for important daily tasks. However, obtaining reliable, high-quality personal care services is often challenging due to high turnover rates among paid caregivers and insufficient knowledge among home health workers about the unique needs of people living with spinal cord injury.
In response to these challenges, the web-based Understanding Spinal Cord Injury course was developed as an essential resource to help prepare PCAs for their integral role in the daily lives of people with spinal cord injury. The core course modules describe the types of spinal cord injuries, common physical needs, personal and social challenges and potential secondary complications, as well as common misunderstandings about the condition. Four modules address special topics including building positive assistant-client relationships, managing blood pressure, understanding assistive technology and medical equipment, and safely transferring clients to and from their wheelchairs.
“For people with spinal cord injuries, routine personal assistance is vital to prevent medical complications and facilitate their participation at home, work and school,” said Cheryl Vines, director of research and education at PVA. “However, obtaining reliable, high-quality services is often a challenge due to high turnover rates among paid caregivers and insufficient knowledge among home health workers about the unique needs of people living with spinal cord injury.” Collaboration is central to the development of the course, according to Dr. Zanca, project director. Led by a steering committee of people with real-world experience with spinal cord injury—including PCAs, home health agency leaders, educators, family members, and rehabilitation clinicians—the modules were developed by the Kessler Foundation in collaboration with the Shepherd Center. The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) and the Paralyzed Veterans of America (PVA) Educational Foundation provided funding.
“Focus groups and interviews were conducted with people with spinal cord injury, family carers, clinicians and experienced PCAs,” explained Dr Zanca, “to ensure that the modules reflect the priorities of people with spinal cord injury. spinal cord as well as the educational needs of aides.”
Recognizing its focus on client-centered spinal cord injury care, the North American Spinal Cord Injury Consortium (NASCIC) endorsed the new course. “We at NASCIC strongly believe in the principle that people with spinal cord injury should work in partnership with their caregivers, clinicians and researchers,” said Barry Munro, NASCIC Treasurer. “As a quadriplegic who is dependent on caregivers, I feel that all caregivers of people with spinal cord injury should take this course,” Munro advised. “I only wish such a valuable resource had been available years ago.”
The course was pilot tested by personal care assistants with no previous experience of spinal cord injury care. “Their feedback was positive,” said Dr. Zanka, “indicating that they gained practical information by completing the course and felt equipped to work effectively with clients with spinal cord injury.”
“Understanding Spinal Cord Injury: A Course for Personal Assistants” is a significant step towards ensuring the quality of personal care services provided to individuals living with spinal cord injury, emphasized Dr. Zanka. “We are now working with our partners to bring this resource to the wider community of individuals, families and professionals who are invested in improving the quality of life after spinal cord injury.”
Dr. Zanca’s presentation will also be offered at the annual meetings of the Academy of Spinal Cord Injury Specialists in San Diego, California (September 3-6) and the American Congress of Rehabilitation Medicine in Atlanta, Georgia (October 28-November 1 ).
This initiative was funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (Grant NIDILRR #90IF0115) and the Paralyzed Veterans of America Education Foundation (Grant #862).
About the Kessler Foundation
The Kessler Foundation, a major nonprofit disability organization, is a world leader in rehabilitation research. Our scientists strive to improve cognition, mobility and long-term outcomes, including employment, for adults and children with neurological and developmental disabilities of the brain and spinal cord, including traumatic brain injury, spinal cord injury, stroke, multiple sclerosis and autism . The Kessler Foundation also leads the nation in funding innovative programs that expand employment opportunities for people with disabilities. For more information, visit KesslerFoundation.org.
Press contacts at the Kessler Foundation:
Deborah Hauss, DHauss@kesslerfoundation.org;
Carolann Murphy, CMurphy@KesslerFoundation.org.
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