The Intervention: Life of a Caregiver Simulation
The aim of this project was to create a learning tool to better prepare the current and future workforce of health and human service professionals to care for older adults and their family caregivers. The project objectives were to increase learners’ awareness and understanding of (a) common issues and needs of family members who care for aging relatives, and (b) the complex, and sometimes poorly coordinated, network of health and human services that caregivers and their families must navigate. The simulation was developed as a collaborative initiative between two members (E.M.S., M.E.M.) of the nursing faculty at James Madison University, Harrisonburg, Virginia, and the director (K.A.P.) of a campus-based, non-profit program offering carefully coordinated support for families who live with and care for their frail elderly family members in the surrounding rural area. The simulation format was modeled loosely after Missouri’s Community Action Poverty Simulation (Missouri Association for Community Action, n.d.), which is a 2-hour community education program designed to increase participants’ awareness of the realities faced by those living in poverty. The project’s proposal was funded by the Commonwealth of Virginia Geriatric Training and Education Award Fund. The plan to implement and evaluate the simulation with students was approved by the university’s institutional review board.
Following a review of the literature and existing relevant resources, the project’s team identified key issues, elements, and concepts to be incorporated into descriptive cases of caregiving families, which would form the basis of the Life of a Caregiver Simulation. The team first identified emotional, spiritual, physical, social, and financial issues of caregiving from the literature and from its extensive professional experience with caregiving families. It further identified the aging and caregiver services in the community.
Next, the team created case narratives of caregiving families that incorporated typical situations, issues, and the challenges experienced by them, as well as a unique family dilemma. For example, in one narrative, a caregiver requires more assistance with activities of daily living for her spouse, but her adult children do not agree on the best solution. In another narrative, a rural caregiver experiences depression regarding her husband’s cognitive decline.
Finally, the team designed the mechanics of the simulation program itself, including space, layout, activities and flow of the event, props, signage and other informational and directive printed material, volunteer and faculty facilitator roles, and orientation of students and facilitative personnel to the simulation. It was important to anticipate how the simulated family members might behave so that enough structure to guide the simulation is provided while simultaneously allowing the experiences and decision making to unfold, as well as to build in opportunities for participants to share and debrief.
The program was piloted with 26 students from nursing and other health and human service majors enrolled in the elective service–learning course, Issues and Applications of Family Caregiving, in which students receive instruction and provide in-home respite and companion care for frail elderly individuals and their family caregivers. The event was held during a selected day from 9:00 a.m. to 12:00 noon in a spacious room with capacity for separate groups to gather and communicate. Circles of four to six chairs were arranged throughout the room with each cluster of chairs representing a family. Each family received instructions, props, and other materials. Family service providers, including those from home health, pharmacy, and church, among others, were located in “the community” at tables around the perimeter of the room. A large sign with the name of the type of provider or agency and a bulleted list of available services offered by that agency, was located behind each table. The majority of volunteers who staffed these simulated services were actual service providers who were recruited to assist with the program.
On the morning of the pilot, the service providers arrived early for orientation and were in their places and ready to enact their roles when the students arrived at 9:00 a.m. As they arrived, students were free to select and sit in any family group. A nursing faculty facilitator joined each group to answer logistical questions and lead small-group debriefing following the simulation. After the program moderator introduced the purpose, objectives, and importance of the simulation program, a second project team member gave explicit instructions for the simulation.
Families were given time to review the instructional materials, including their case narrative and caregiving dilemma. Students chose the family member roles they would play and used appropriate props. For example, they used earplugs to simulate partial deafness and eyeglasses smeared with petroleum jelly to simulate limited vision of a care recipient and splinted joints to simulate arthritis of a care giver. Some care recipient roles were confined to a bed or a wheelchair and others used assistive devices.
Each packet contained a simple jigsaw puzzle with labeled pieces representing general activities or household chores (e.g., meals, laundry, and prescription filling), and families understood that they needed to complete simple actions, such as visiting the pharmacy, before they could insert each piece to complete the puzzle. Packet instructions explained that families needed to (a) attend to general activities and household chores (puzzle activities), (b) discuss and address their family dilemma using the community service providers and resources located in the community, and (c) support the caregiver to care for his or her own personal needs. Each packet also contained some discretionary money that the family could choose to spend. For example, one family needed to determine whether to eat out, maintain the caregiver’s gym membership, or spend the money to obtain additional in-home services for their frail older adult.
The pilot was divided into three 15-minute segments sequentially representing morning, midday, and afternoon. At the conclusion of each segment, the moderator rang a bell and family members had 5 minutes to return “home” and prepare for the next segment. At the beginning of the final 15 minutes, each family received a wild card representing an unexpected emergency, such as an unanticipated household expense or a first episode of incontinence.
Prompted by the final bell, families and faculty facilitators returned home and spent 10 minutes transitioning from their experience to a shared discussion of its effect and meaning. The moderator then led a full-group, 45-minute debriefing during which each family shared reflections, and individual students offered insights. For example, the project team anticipated that students who role-played immobile care recipients confined to a cot might become bored. Surprisingly, these students articulated many observations, including frustration about their inability to help the family and their feelings of guilt for being a burden to the group. The service providers shared their observations as well. For example, the minister noted that although his church offered a compassion fund and free equipment, few families used them.