New online course helps personal care assistants better understand spinal cord injury

"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 injury, was presented today at the Paralyzed Veterans of America Healthcare (PVA) Summit + Expo at the Renaissance Orlando at SeaWorld Hotel in Orlando, FL, by Jeanne Zanca, MPT, PhD, FACRM, assistant director of the Center for Spinal Cord Injury Research at Kessler Foundation, and chair of the Foundation's Institutional Review Board. The course, the first specifically designed to introduce personal care assistants to spinal cord injury, is available at no cost 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 others for important daily tasks. However, obtaining reliable, high-quality personal care assistance services is often challenging due to the high turnover rates among paid caregivers and insufficient knowledge among home health care workers about the unique needs of individuals living with spinal cord injury.

In response to these challenges, the web-based course, "Understanding Spinal Cord Injury," was developed as a basic resource to help prepare PCAs for their integral role in the daily lives of people with spinal cord injury. The course's core modules describe the types of spinal cord injury, 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 transferring clients safely to and from their wheelchairs.

"For people with spinal cord injuries, routine personal care assistance is vital to preventing medical complications and facilitating their involvement at home, work, and school," said Cheryl Vines, Director of Research and Education at PVA. "However, obtaining reliable, high-quality services is often challenging due to the high turnover rates among paid caregivers and insufficient knowledge among home health care workers about the unique needs of individuals living with spinal cord injuries." Collaboration was fundamental to the course's development, according to Dr. Zanca, the project's director. Guided by a steering committee of people with real-world experience with spinal cord injury-;including PCAs, home health care agency leaders, trainers, family members, and rehabilitation clinicians-;the modules were developed by Kessler Foundation in collaboration with Shepherd Center. The National Institute on Disability, Independent Living, and Rehabilitation Research NIDILRR) and the Paralyzed Veterans of America (PVA) Education Foundation provided funding.

"Focus groups and interviews were conducted with people with spinal cord injury, family caregivers, clinicians, and experienced PCAs," Dr. Zanca explained, "to ensure that the modules reflect the priorities of individuals with spinal cord injury as well as the educational needs of assistants."

Recognizing its focus on client-centered care for spinal cord injury, the North American Spinal Cord Injury Consortium (NASCIC) has endorsed the new course. "We at NASCIC firmly believe in the principle of people with lived experience of spinal cord injury working in partnership with their caregivers, clinicians, and researchers," said Barry Munro, treasurer of NASCIC. "As a person with tetraplegia who is dependent on attendant care, I feel all caregivers for people with spinal cord injury should take this course," advised Munro. "I only wish such a valuable resource had been available years ago."

The course was pilot tested by personal care assistants without prior experience with spinal cord injury care. "Their feedback was positive," Dr. Zanca said, "indicating that they gained practical information by completing the course and felt prepared 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 assistance services provided to individuals living with spinal cord injury," Dr. Zanca emphasized. "Now we are working with our partners to disseminate this resource to the wider community of individuals, families, and professionals who are invested in improving 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 Professionals in San Diego, CA (Sept. 3-6), and the American Congress of Rehabilitation Medicine in Atlanta, GA (Oct. 28-Nov 1).

This initiative was funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR Grant #90IF0115) and the Paralyzed Veterans of America Education Foundation (Grant #862).