PVA Healthcare Summit + Expo breakout session highlights new course
For many people with a spinal-cord injury (SCI), caregivers and personal care assistants make it possible to live independently in their communities or at home. But often, hired aides have little or no knowledge of how to care for someone with SCI. A new free, online education course is aiming to change that.
The course, called Understanding Spinal Cord Injury: A Course for Personal Care Assistants was presented on Monday’s first day of the PVA Healthcare Summit + Expo at the Renaissance Orlando Monday at SeaWorld in Orlando, Fla. It’s a free resource to enhance the training of professional care assistants and is supported in part by grants from the Paralyzed Veterans of America (PVA) Education Foundation and the National Institute on Disability, Independent Living and Rehabilitation Research.
Jeanne Zanca, MPT, PhD, chair, Institutional Review Board and assistant director for the Center for Spinal Cord Injury Research at Kessler Foundation in East Hanover, N.J., says getting good quality help has become more difficult, especially after the novel coronavirus (COVID-19) pandemic and with more people leaving the field.
“Whether it’s someone you hired through an agency or someone you privately hired, it’s very common that they have not had prior experience working with someone with spinal-cord injury. It’s just not nearly as common a condition as dementia, memory loss, stroke or other kinds of conditions that create a need for personal care assistants,” Zanca says. “And we heard from people with spinal-cord injury that we interacted with in the course of several research projects how frustrating it can be to have to explain spinal-cord injury over and over again as those caregivers turn over and then people come through your door, and how often misunderstandings about what spinal-cord injury does or does not involve can interfere with the interpersonal relationships between someone with spinal-cord injury and hired care. And they also talked about how the dynamics between someone they’re hiring and bringing into the home are very different from working with someone you already know.”
Because of this gap in training materials and programs, Kessler, in partnership with Shepherd Center in Atlanta, developed a general overview course to give care aides some context to better understand the experience of someone with SCI and to get care aides thinking about how could act in certain ways to be respectful of that experience. The team also wanted to create a course that could lay a foundation for hands-on training, so assistants would be better able to ask questions and understand why they were being taught to do certain things.
In developing the course, the team was careful not to present any information that could conflict with any specific training that someone would receive about a client they’re working with or in general training from an agency. Its goals are help them be more prepared, know what to expect and feel more comfortable when entering a SCI client’s home and to help them communicate more productively with their clients.
People with SCI, family members, experienced SCI personal care assistants, home health care agency leaders who would be able to organize training programs for their staff, as well as rehabilitation professionals, physical therapists, occupational therapists, nurses, social workers and physicians helped collaborate to develop the course.
Additionally, a steering committee was formed and organized focus groups to learn about the experiences of people with SCI by asking questions such as, “What are some things you are constantly explaining when you have a new personal care assistant?” Or what are some examples of misunderstandings you’ve had between an assistant and yourself that maybe we can help clarify?” Then, they helped with the design of the course and helped share the course with others. The steering committee was compensated for their time.
The work groups looked at drafts of the voiceover scripts and ensured the vocabulary made sense. Lastly, they tested the course with 15 personal care attendants, some who were familiar with SCI and others who were not and received more feedback to make final tweaks.
The finished product consists of eight modules. The first module defines an SCI and what it means.
“It talks about some examples of causes of spinal-cord injury, traumatic and non-traumatic, and talks about the characteristics of people with spinal-cord injury, including that it’s very common for spinal-cord injury to happen to people relatively young and when they have a lot of their lives ahead of them, which is a key difference between spinal-cord injury and many of the other conditions they [care aides] may be more familiar with,” Zanca says.
The course also covers physical systems affected by SCI, including sensation, breathing reflexes, spasticity, temperature control, blood pressure control and bowel and bladder control, as well as personal and social challenges.
Another module discusses common misunderstandings between people with SCI and their care aides, such as if a client is struggling with a task and he or she appears to need help. Zanca says aides must ask about the person’s preferences and reasons for wanting to attempt a task without help.
Other special topics include how to establish job expectations, resolving conflicts, special equipment aides might see in the client’s home and the importance of maintenance and tips for safe wheelchair transfers.
“It just gives a general overview of things to think about when you’re working with your client on transfers, such as talking about what type of transfer you prefer to use in what situation, things to check before you move, like obstacles in the way or how stable the surfaces are,” Zanca says.
The entire course, which uses a platform called Thinkific, contains about 90 minutes of content and includes mini-quizzes. Users can skip topics and come back to them later. The content includes slides with images and voiceover and videos, which are a combination of interviews with people with SCI talking about their own experiences with health care aides and personal care assistants giving their perspective.
The team is currently working on a version with Spanish-language captioning, and it may add more modules in the future.
To enroll in the free online course, visit Joseph Rowntree Foundation.