Journal of Nursing Education

Major Article 

Life of a Caregiver Simulation: Teaching Students About Frail Older Adults and Their Family Caregivers

Merle E. Mast, PhD, RN; Erika Metzler Sawin, PhD, RN; Kathleen Anne Pantaleo, BA

Abstract

The number of older adults with caregiving needs is rapidly escalating, and the majority of these adults are cared for at home by unpaid family members. Nurse educators must better prepare nurse graduates to meet the needs of this population, as well as to include family caregivers as part of the health care team. This article describes the design, implementation, and preliminary outcomes of a unique learning experience, the Life of a Caregiver Simulation, which uses narrative pedagogy to increase students’ awareness and understanding of the needs of older adults, their family caregivers, and the community services they use. Subjective data from students (N = 25) indicated the simulation served as an effective catalyst for students to experience first-hand and understand the stress and burdens of caregiving.

Abstract

The number of older adults with caregiving needs is rapidly escalating, and the majority of these adults are cared for at home by unpaid family members. Nurse educators must better prepare nurse graduates to meet the needs of this population, as well as to include family caregivers as part of the health care team. This article describes the design, implementation, and preliminary outcomes of a unique learning experience, the Life of a Caregiver Simulation, which uses narrative pedagogy to increase students’ awareness and understanding of the needs of older adults, their family caregivers, and the community services they use. Subjective data from students (N = 25) indicated the simulation served as an effective catalyst for students to experience first-hand and understand the stress and burdens of caregiving.

Dr. Mast is Professor, and Dr. Sawin is Assistant Professor, Department of Nursing, James Madison University; and Ms. Pantaleo is Program Director, Caregivers Community Network, Harrisonburg, Virginia.

This work was supported by the Commonwealth of Virginia Geriatric Training and Education Award Fund. The authors thank Lynda Markut, Workplace Education Coordinator, Alzheimer’s Association of Southeast Wisconsin, for her assistance with the project.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Merle E. Mast, PhD, RN, Professor, Department of Nursing, James Madison University, MSC 4305, 801 Carrier Drive, Harrisonburg, VA 22807; e-mail: mastme@jmu.edu.

Received: September 23, 2011
Accepted: March 14, 2012
Posted Online: April 27, 2012

The number of older adults with caregiving needs is escalating in the United States and in other developed countries, and their care is increasingly being provided for by unpaid family caregivers (Shank, 2010). Nurse educators must prepare nurse graduates to care for this population and must educate these nurses to incorporate family caregivers as part of the health care team. Simulation learning, which focuses on knowledge, skills, and complex decision making, can also be used to influence students’ beliefs, values, and understanding of their patients’ lived experiences (Parker & Myrick, 2010). This article examines the value of narrative pedagogy in nursing education and relates it to a group simulation, the Life of a Caregiver, as a means of teaching students about the needs of frail older adults and their family caregivers. The pilot project and preliminary outcomes are described.

Background

Family Caregiving

As the post-World War II Baby Boom generation ages, the number of older adults in the United States will nearly double between 2005 and 2030, and a growing percentage of these older adults live with debilitating conditions that require constant caregiving (Shank, 2010). Unpaid family caregivers—often aging spouses who, themselves, are frail—provide an estimated 90% of long-term care; further, one in five households in the United States provides support to an aging or disabled family member for 18 or more hours per week (Centers for Disease Control and Prevention, Healthy Aging Program, 2010). The often daunting challenges of caregiving may include balancing career and family responsibilities, finding personal time to relax and care for oneself, and managing the emotional and physical burdens of caregiving (Navaie-Waliser, Spriggs, & Feldman, 2002). Informal caregivers are at significant risk for depression and other morbidity, especially when they care for individuals with Alzheimer’s disease (Alzheimer’s Association, 2011; Etters, Goodall, & Harrison, 2008; Schoenmakers, Buntinx, & Delepeleire, 2010). Many caregivers lack adequate finances, social resources, information, and the emotional support needed to manage the health care needs of their frail family members (Anderson et al., 2000; Salfi, Ploeg, & Black, 2005). Furthermore, caregivers, who are the primary interface with the health care system, often receive inadequate support from health professionals (Maiden, Horowitz, & Howe, 2010; Navaie-Waliser et al., 2002).

Need for Effective Nursing Education in Gerontology

The growing number of aging adults with chronic illness is contributing to an impending crisis for health and human service systems (Center for Health Workforce Studies, 2006). This crisis is exacerbated by a shortage of well-equipped professional care providers and a critical need to prepare students in health professions to understand and meet the needs of this population (Fleming, Evans, & Chutka, 2003). The report, Retooling for an Aging America: Building the Health Care Workforce (Institute of Medicine, Board on Health Care Services, 2008), advocates for enhancing content on aging in health professions education.

Students’ knowledge and understanding of the issues of aging adults affect their career choices and the quality of care they give. The literature provides ample evidence that health and human service students rarely seek to specialize in gerontology and that their attitudes toward aging are predominantly negative (Anderson & Wiscott, 2003; Fitzgerald, Wray, Halter, Williams, & Supiano, 2003; Happell & Brooker, 2001; Kaempfer, Wellman, & Himburg, 2002; Koren et al., 2008) or neutral (de la Rue, 2003; Koren et al., 2008; Lun, 2011; Ryan & McCauley, 2004–2005). The number of programs specializing in gerontology continues to decline (Maiden et al., 2010).

Moreover, many nursing programs continue to provide inadequate preparation in this area. Gilje, Lacey, and Moore (2007) studied trends in U.S. undergraduate nursing programs in relation to the American Association of Colleges of Nursing’s (1998) baccalaureate competencies and curricular guidelines for geriatric nursing care and found significant ongoing gaps in curricular content.

Nursing students often base their limited knowledge of aging and caregiving on personal experience with aging relatives. Research has shown that students’ positive attitudes toward the older population influence their intent to work with older adults (Cohen, Sandel, Thomas, & Barton, 2004; Heuberger & Stanczak, 2004), and increased knowledge about aging sensitizes students to aging bias (Cummings, Galambos, & DeCoster, 2003) and positively influences their attitudes toward older adults (Kimuna, Knox, & Zusman, 2005; Laditka, Fischer, Laditka, & Segal, 2004). This is particularly true when learning activities are experiential and specifically designed to address the needs of older adults (Beling, 2010; Fusner & Staib, 2004).

Simulation as a Teaching–Learning Strategy in Nursing

The use of patient care simulation has become increasingly popular in educating nursing students (Akhtar-Danesh, Baxter, Valaitis, Stanyon, & Sproul, 2009; Shinnick, Woo, & Mentes, 2011; Sinclair & Ferguson, 2009), particularly following the National League for Nursing’s (2003) call to reform nursing education and the Carnegie Study that called for more effective strategies to link classroom education and its clinical application (Benner, Sutphen, Leonard, & Day, 2009). Human patient simulation has long been valued as experiential learning that enhances the acquisition of psychomotor skills, critical thinking, and clinical reasoning in complex patient care situations (Harder, 2010; Issenberg, McGaghie, Petrusa, Gordon, & Scalese, 2005; Issenberg & Scalese, 2007; Shinnick et al., 2011). More recently, simulation is increasingly recognized as an effective way to influence students’ beliefs, values, and understanding of their patients’ lived experiences. Parker and Myrick (2010) recognized this need when they advocated for enhanced critical reflection and debriefing by nursing students in the context of human patient simulation to “empower students to challenge their preconceived beliefs, assumptions, and values and socialize them…to clinical practice” (p. 326).

Simulation and Gerontology

Nursing and other health and human service disciplines have developed and used various forms of simulation to socialize students to the needs of older adults. For example, in the simulation game, Into Aging: Understanding Issues Affecting the Later Stages of Life, and a later adaptation, The Aging Game, students take on the identity of an older adult and experience life events as they “age” (Dempsey-Lyle & Hoffman, 1978; Hoffman & Reif, 1978; McVey, Davis, & Cohen, 1989). Although limited, there is some anecdotal and research evidence that these games improve students’ attitudes toward the elderly (Blakely, Skirton, Cooper, Allum, & Nelmes, 2009; Dillon, 2009; Pacala, Boult, & Hepburn, 2006; Varkey, Chutka, & Lesnick, 2006).

Other forms of simulation have been used to teach about aging. Tan, Mulhausen, Smith, and Ruiz (2010) described the use of virtual patients in case situations, and Andersen, Traynor, and Crookes (2011) described a simulated patient used to teach about the trajectory of dementia. Rull, Rosher, McCann-Stone, and Robinson (2006) reported a program in which students followed a simulated aging couple, represented by standardized patients, across 4 years of medical school. To date, most simulations of aging have focused on the experience and needs of aging individuals. However, the necessity remains for effective teaching strategies regarding the needs of families caring for frail older adults in the context of their community.

Narrative Pedagogy

The term narrative pedagogy was advocated by Diekelmann (2001) as an alternative educational approach. Although Diekelmann acknowledged the importance of conventional pedagogy, which is teacher generated and based on competencies, outcomes, and logical thinking, she advocated for increased attention to interpretive pedagogy, or teaching–learning methods, that incorporates various ways of knowing, thinking, and interpreting life experiences.

Activities that enhance learning using narrative pedagogy include reflecting, examining, exploring, sharing, and deconstructing phenomena, and teachers partner with students to facilitate active participation in learning (Brown, Kirkpatrick, Mangum, & Avery, 2008; Diekelmann, 2001). Over the past decade, nursing faculty have used a variety of modalities to enhance narrative pedagogy, including art, film, music, storytelling, and journaling (Brown et al., 2008). Scheckel and Ironside (2006) reported that nursing students learned more effectively when faculty added small, nuanced changes to ordinary clinical learning experiences to encourage reflection, insight, and interpretive thinking.

Stories are powerful vehicles for student discovery of knowledge relevant to nursing because they capture human experience at a personal level, evoke empathy, and lead to understanding of the human condition, thus allowing students to vicariously learn from the experiences of others (Brown et al., 2008). Gazarian (2010) used narrative pedagogy as the framework for a digital story assignment in a senior nursing course. Ironside (2003) developed a process by which students in an introductory nursing course shared stories of caring to understand the concept of caring. Kirkpatrick and Brown (2004) incorporated stories from film and literature into a geriatric nursing course, where students also engaged in a service–learning project with an older adult and kept a journal of their interactions. Following a review of the narrative pedagogy literature, Walsh (2011) advocated for the application of narrative pedagogy to online multimedia simulations.

Narrative pedagogy provided an ideal framework because it can guide students’ exploration of the lived experience of aging and family caregiving within the context of family and community. The Life of a Caregiver Simulation project used case narratives of caregiving families in a simulated learning program designed to assist entry-level students to understand the experiences and issues of families who care for frail, and often chronically ill, older adults.

Method

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.

Sample and Procedures

Twenty-six students enrolled in the service–learning course, Issues and Applications of Family Caregiving, participated in the mandatory simulation intervention. After being assured that their data would in no way affect their course grade, 25 students gave signed informed consent to participate in quantitative and qualitative data gathering for the study. The students understood that the data would be compiled anonymously and would be analyzed and reported in professional presentations and publications.

Data Collection

A project team member administered surveys before and after the simulation, which included quantitative measures of knowledge and attitudes about aging and family caregiving. These data were potentially biased because the simulation was held late in the semester due to scheduling constraints, thus allowing other course activities to affect change scores. Therefore, these quantitative data will be gathered and analyzed during future simulations and will be reported elsewhere.

Data gathered immediately following the simulation event included handwritten qualitative responses regarding the students’ experiences, what the students learned that was of value to them, and a single, 1 to 10 numerical rating on the value of the simulation as a learning experience.

Data Analysis

Qualitative data were compiled anonymously into a separate Microsoft® Word document. Using a descriptive and interpretive phenomenological selective approach and an editing analysis style, the two faculty investigators independently read and re-read the compiled comments, highlighted meaningful segments, and generated categories under which the data were organized (Polit & Beck, 2006; Van Manen, 1990). They then met to discuss, compare, and refine the analysis to generate themes. Finally, a third content expert in gerontological practice read the narratives and validated the themes. Quantitative data were analyzed using the Statistical Analysis System.

Results

The mean student rating of the value of the simulation as a learning experience on a 1 to 10 scale was 7.68 (SD = 1.44). In their narrative feedback, students described simulation as an effective way to learn to understand the challenges experienced by family caregivers and the effect on family dynamics, finances, and tasks. Students were grateful to the community volunteers and the faculty facilitators for further enriching the learning experience. As one student noted, the facilitator “brought up things we didn’t think of.” Several students noted that the simulation was successful because it was realistic, indicating “Speaking with real people from agencies gave us real insight into what needed to get done.” Students described the simulation as “mind opening” and “eye opening,” and their experience as “insightful.” One student reflected that the simulation helped her as a future nurse and, furthermore, “it is helpful to keep in mind as my parents age.”

Themes

Descriptive analysis of the qualitative data yielded several themes: (a) the value of simulation as a method to increase understanding of aging and caregiving issues; (b) enhanced knowledge and awareness of services and organizations that support aging and caregiving; and (c) increased understanding of the stress and burdens experienced by caregiving families.

Value of the Simulation Method. Students’ responses frequently included phrases such as “…put ourselves in the shoes of…” and “…became more aware of….” One student said, “The simulation really opened my eyes to the difficulties caregivers face and I definitely feel as though I have a better understanding of what the clients and caregivers go through.” Related to this theme was the value of role-play. One student noted, “Through role-playing during the simulation, I learned how difficult it really is to care for an older family member while maintaining a positive attitude, good relationships, and a healthy lifestyle.” Another student wrote:

Although you might think one option is best for your family member, [he or she] might completely disagree. Sometimes you can meet in the middle and come to a compromise, but it’s not always an easy process when deciding the needs of a loved one. It is best to assess all possible options and come to an agreement before making a decision.

A student commented that the “hands-on manner” of the project “encouraged me to think critically and plan out how our particular family should use the money for the family and also how to get the best care possible for the elderly family member.”

Enhanced Knowledge and Awareness of Services. The simulation offered real-life knowledge and understanding of the wide array of services available for frail older adults and their family caregivers, as well as the limitations of those resources. Staffing the simulated agencies with actual professionals from the community enhanced realism and provided a rich exchange during the final debriefing. One student noted, “[The simulation] helped me realize there are different approaches to providing services to the families.” Other students reported increased knowledge about the “interdisciplinary approaches” to service provision, and that “the simulation provided me with a wealth of knowledge related to the services and organizations available for the aging and caregivers.” One student described gaining stronger knowledge of terms related to caregiving, such as respite and hospice.

Understanding of the Stress and Burdens Experienced by Caregiving Families. Typical comments, such as “The simulation made me realize the difficulties that disabled elderly individuals and their families face” and “It showed me the amount of stress a caregiver can experience” indicated enhanced student appreciation for complex caregiving dilemmas. One student noted, “A caregiver not only devotes their time to an aging family member but also has a life of their own to manage.” Another related:

The simulation we completed really showed me the stresses and struggles of caregivers and how many responsibilities they take on. They have to get chores done and accomplish lists of jobs while always making sure the person in need of care is being provided for. Another big issue in family caregiving is the financial struggle. Medicines, hospital bills, and respite care are all expenses that a caregiver must cover. Caregivers tend to sacrifice a lot to make sure everything gets paid for.

The following quote summarizes all three themes:

During the simulation I played the part of the caregiver, Nancy, a 55-year-old woman with rheumatoid arthritis in both knees, caring for her husband, who has Alzheimer’s, as well as her mother, who has Alzheimer’s and is bedridden. While playing this role I faced many challenges. My circulation to my knees was being cut off by ACE bandages; I had to push my husband around in a wheelchair, which was hard; and I had to deal with a bunch of different organizations. Exhausting! It was interesting to see how much it takes to organize care. Some of the organizations frustrated me. They could not give me what I wanted and I felt the frustrations that normal caregivers would feel. I felt this was a great learning experience for anyone who will be a health care provider.

Discussion and Conclusion

This article describes a unique approach to simulation learning based on narrative pedagogy and was designed to enhance student understanding of the needs of families who care for frail older adults and the network of community services they use. During the simulation, students “lived” the dilemmas of caregiving families, then examined their experiences in small-group discussion and large-group debriefing. Data from participants indicated that this simulation may help to effectively address the critical need for more effective nursing education in gerontology that considers older adults in the context of their families and communities (Gilje et al., 2007; Institute of Medicine, 2008).

The outcomes data are preliminary and the simulation needs to be refined, replicated, and further assessed for effectiveness as a teaching–learning tool. For future assessment, additional student data, including age, ethnicity, culture, and prior family caregiving experience, should be gathered and analyzed. The students who participated in the simulation were self-selected to enroll in an elective course on family caregiving; therefore, their responses to the simulation may not be representative of the larger population of nursing students.

Even as a pilot event, the Life of a Caregiver Simulation served as a powerful form of narrative pedagogy that could be replicated in other nursing programs to teach issues of aging and caregiving in family and community contexts. As Parker and Myrick (2010) noted, transformative learning (based on Mezirow’s transformative learning theory) occurs when a situation challenges the learner’s assumptions and stimulates exploration of new roles or actions. Students’ responses indicated that the simulation indeed challenged their attitudes, biases, and assumptions of aging and caregiving. It served as a catalyst for students to experience and understand, on a first-hand basis, the stresses and burdens of caregiving and to apply this experience to their professional roles. Furthermore, it provided practical and useful information regarding the benefits and limitations of health and human services for older adults and caregivers. Dialogue with faculty facilitators and debriefing to explore the meanings of the simulated experience promoted what Nagda, Gurin, and Lopez (2003) termed engaged learning, by relating issues and concepts to real-life situations by conversations with others.

As next steps, evaluative feedback from the students, community volunteers, and faculty who participated in the pilot will be incorporated into further development and revision of the program. It is imperative that students in nursing and other health and human service majors understand the needs of older adults and their caregivers to effectively care for aging families. The Life of a Caregiver Simulation is one promising way to help students gain this understanding.

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Authors

Dr. Mast is Professor, and Dr. Sawin is Assistant Professor, Department of Nursing, James Madison University; and Ms. Pantaleo is Program Director, Caregivers Community Network, Harrisonburg, Virginia.

This work was supported by the Commonwealth of Virginia Geriatric Training and Education Award Fund. The authors thank Lynda Markut, Workplace Education Coordinator, Alzheimer’s Association of Southeast Wisconsin, for her assistance with the project.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Merle E. Mast, PhD, RN, Professor, Department of Nursing, James Madison University, MSC 4305, 801 Carrier Drive, Harrisonburg, VA 22807; e-mail: .mastme@jmu.edu

10.3928/01484834-20120427-02

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