Simulation Demonstrates Caregiver Challenges
Caring for an elderly or ill family member is not an easy job, and currently 34 million adults nationwide provide long-term care for an adult who is 50 or older.Virginia has a fast-growing population of people over 80 years old, and many caregivers themselves are elderly. As the economy affects what a family can afford, home-based solutions become important to prolong a care recipient’s independence and quality of life.
To enhance students’ understanding of this need, the Virginia Center on Aging awarded JMU a geriatric training and education grant of $20,000 to direct the Life of a Caregiver Simulation project. The brainchild of Dr. Merle Mast and Dr. Erika Metzler-Sawin in the Department of Nursing, and Kathleen Pantaleo, program director of the Caregivers Community Network, the risk-free simulation broadened the experiences of health and human service students who provide respite care to low-income families caring for frail older adults. Through a service-learning partnership with CCN, these placements illustrate firsthand what caregivers experience on a day-to-day basis and how the age wave impacts the need for services.
“A lot of caregivers are what we call the ‘sandwich generation,’ because they’re caring for their own children and jobs and then they’re caring for their parents,” Mast said.
By bridging the perspective gap with these families through revisiting real situations, students can understand how that caregiver copes with their responsibilities and finds support in the community. Mast, Pantaleo and Metzler-Sawin drew ideas from similar projects to flesh out realistic circumstances, and on March 28 they led 30 students through the pilot simulation.
Divided into six “families” and assigned individual roles, the groups went through three 15-minute scenarios that represented the morning, middle and afternoon of a typical day. The families’ overarching goal was to create a home care situation that fit their budget and allowed caregivers more free time. Meanwhile, the caregivers were also responsible for daily chores like cooking, cleaning and dispensing medication. Later scenarios presented them with “wildcard” situations that threw plans out the window, like a sudden fall that led to an emergency room visit for a broken hip.
Faculty helped the groups make decisions and guided them through the myriad of care options. Representatives from a pharmacy, a church, an adult day care, a retirement community, social services and more answered questions and listed their services. Using tokens to represent their discretionary funds, participants gained a sense of sacrifice while covering expenses on a limited income.
Some participants also had a physical condition to consider, from wearing glasses or walking with a cane, to simulating arthritis by taping popsicle sticks to their fingers and bandaging their knees. A few students played bedbound elders.
“I learned that roles oftentimes become reversed in the family – in my scenario I became the caregiver for my parents and I had to worry about them,” one student reflected, expressing sympathy for care recipients. “There is a lot of guilt associated with their condition.”
Metzler-Sawin surveyed students and volunteers afterward, and preliminary feedback said students gained a better understanding of how caregivers manage complex issues and the unpredictability of the process. In one scenario, a student played a daughter discussing with her father whether moving her mother into a facility would benefit everyone.
“I felt good that I could use my lifetime and classroom experience to play the part,” she said. “I felt really passionate about helping the family find a situation that worked for them, especially because this situation is so close to the family that I work with in CCN.”
In the survey results, students said the most difficult part of the simulation was trying to make all the right choices.
“You had to be able to handle the money and make sure your patient is cared for at the same time,” one participant said. “It really showed how important time is and how many vital decisions caregivers have to make.”
They also experienced the difficulties of organizing care.
“Some of the organizations could not give me what I wanted and I felt the frustrations that normal caregivers would feel,” another student said.
This input will guide changes to the next simulation for next year, Metzler-Sawin said.
“This time the students had several weeks of direct care in the community before the simulation, and then they had basically the month of April to benefit from what they learned,” she explained. “We want them to get that experience earlier.” There is also potential to include more interested students, particularly from social work.
Pantaleo said the process expanded her way of thinking about how to assist caregivers and their families. “It’s something that happens to you, and people are all over the map in terms of how they deal with it,” she said. “I feel we have an obligation to help them and their families deal with it in a good way, that’s really what CCN is all about.”