Unpaid family (or informal) caregivers provide as much as 90% of the long-term support for older adults receiving care at home.1,2 These caregivers play a substantial role in the health outcomes of patients, but their labor often goes unrecognized by health care providers.2,3 One result of this unrecognized labor is the disconnect that sometimes exists between family caregivers and health care providers, which can result in fragmented communication. This fragmented communication may increase caregiver stress and compromise patient care.4
Approximately 39.8 million individuals, representing 16.6% of the U.S. adult population, provide care to an ill or disabled loved one, who is also often advanced in age.3 On average, they provide care for 4 years, while a quarter of them continue to provide care for 5 or more years.5 In addition to being elderly, recipients of this informal care are often frail and vulnerable, and in some cases, they require around-the-clock monitoring. Managing multiple chronic illnesses and complicated medication and treatment regimens as well as assisting with daily functions can be daunting work. Caregivers need ongoing support to manage their loved ones’ complex conditions, navigate the intricacies of the health system, and advocate for services that could improve the quality of life for their loved ones and themselves. The Institute of Medicine’s report “Retooling for an Aging America: Building the Health Care Workforce” highlights this need, noting that “the trend toward fewer [formal] caregivers at a time when our aging population is expanding underscores the importance of developing strategies to support informal caregivers.”2
Although providers have a responsibility to recognize caregiver burden in addition to treating patients, they receive little or no training on issues important to caregivers.6 However, with time constraints, national accreditation requirements, and already-packed curricula, introducing new content into undergraduate and graduate medical education is difficult. To address this problem, we developed the Building Caregiver Partnerships Through Interprofessional Education project with the aim of providing innovative curricula on caregiving issues for medical and interprofessional education programs. This Innovation Report describes our approach to developing the curricula for medical students and residents, early feedback from learners and faculty as part of a process evaluation, and our next steps for conducting an outcomes evaluation and implementing the curricula in other health professions programs.
The Building Caregiver Partnerships Through Interprofessional Education project (introduced between August and November 2014)—a collaborative effort between Northeast Ohio Medical University (NEOMED) and Summa Health in Akron, Ohio—deploys storytelling to promote respectful communication and mutually beneficial collaboration between health care providers and caregivers by providing medical students, residents, and other interprofessional team members with exposure to personal, caregiving narratives.
The initial inspiration for the project came from a NEOMED medical student (E.S.) whose own family’s 9-year caregiving experience enriched her life and influenced her to choose a career in geriatrics and palliative care. Given the emotional power of E.S.’s story and recognizing the pedagogical advantages of using film in medical education,7 we filmed E.S. and members of her family sharing their experiences with caregiving. Given the diversity of caregiving situations, we decided to include the experiences of 3 additional families who provided care for over 5 years. Each family was interviewed for approximately 2 hours in their home. In December 2012, these interviews (all filmed between June 2011 and March 2012) were edited to produce a 20-minute film, titled No Roadmap: Caregiver Journeys, that highlights a variety of themes common to caregiving. Because of students’ initial positive responses to the film, we expanded the project to include the development of curricula that aimed to increase health care providers’ awareness of caregivers’ experiences and comfort in communicating with them.
To support these efforts, the Arthur Vining Davis Foundations awarded us a 3-year grant (July 2014–June 2017) to create transportable curricula for medical and other health professions training. From the outset of the grant, it was our intent to develop a 2-tier curriculum—the first for undergraduate medical education and the second for graduate medical and health care provider (i.e., other health professions or interprofessional) education—with the film providing the foundational component for both tiers.
The project’s interprofessional steering committee bridged the 2 worlds of health care and informal caregiving, with members who were caregivers and members who were representatives from family medicine, internal medicine, geriatrics, palliative care, surgery, social work, nursing, chaplaincy, health humanities, sociology, and medical education. Members who were not caregivers were carefully selected on the basis of their recognition of the invaluable work of family caregivers, their sphere of educational and/or clinical influence, and their belief in the persuasive power of stories. The entire steering committee met monthly for the first 6 months of the grant (July–December 2014) to identify key behaviors and communication strategies that promote provider–caregiver partnerships, which formed the project’s core principles and objectives for both the undergraduate and graduate tiers (see List 1). It formed subgroups that met (August–December 2014) to design and implement 3 pilot programs for medical students and residents in internal medicine and family medicine, as well as 2 pilot programs for interprofessional education (September 2015–June 2017). Thereafter, the committee met every 3 months to oversee and report on the development of the pilots (see Table 1).
Key Behaviors and Communication Strategies That Promote Provider–Caregiver Partnerships as Identified by the Steering Committee Used in the Development of the Educational Project, Building Caregiver Partnerships Through Interprofessional Education, Northeast Ohio Medical University and Summa Health, 2014–2017
- Appreciate the cultural specificity of patients and caregivers.
- Convey respect for patients and caregivers verbally and nonverbally (e.g., use appropriate body language).
- Listen equally to patients and caregivers.
- Understand the dynamics of the patient–caregiver relationship.
- Understand the individual goals and care preferences of patients and caregivers.
- Appreciate the emotional and spiritual needs of patients and caregivers.
- Identify the challenges of a “day in the life” of the caregiver.
- Verbally validate caregivers’ contributions to patient care.
- Ask what caregivers need.
- Anticipate the barriers caregivers face and help them problem-solve to address these barriers.
- Engage others (e.g., nurses, social workers, chaplains) in helping caregivers navigate the health care system.
- Help caregivers honor patients’ wishes.
We developed a compendium of educational tools for both tiers. Several discussion guides, case-based learning exercises, structured clinical encounters, and team-based simulations were crafted as companion educational tools for the film for both tiers, allowing faculty to select those that best met their learners’ and organization’s needs. For example, one discussion guide is based on themes present in the film (see Table 2), while another focuses on personal and clinical experiences relevant to learners. Because the film touches on difficult situations that might trigger emotional responses in viewers who have experienced end-of-life care with a loved one or defensiveness from others who see the film as passing judgment on anyone who cannot make sacrifices similar to the ones the caregivers in the film made, we provided instructions with all of the discussion guides for creating “safe spaces,” where open dialogue and multiple and conflicting viewpoints are welcome. For the graduate tier, we also designed 8 clinical cases to demonstrate the diversity of caregiving families, address various issues that caregivers face (e.g., shared decision making, emotional stress and burnout, conflict of interest, challenges of dementia caregiving, cultural considerations, and communication and grief support), and illustrate different points of contact with caregivers (e.g., the hospital, home, clinic, or phone).
We report on medical student, resident, and faculty impressions of the educational tools below (see Outcomes for more information). The study was determined to be program evaluation on November 3, 2014, by the institutional review boards of NEOMED and Summa Health, and later by each additional hospital’s institutional review board.
To assess the value of the educational tools for the undergraduate tier, we pilot tested them with third-year medical students at NEOMED, from August 2014 to May 2017, by integrating them into a well-established hospice experience in the family medicine rotation.8 This experience pairs students with a hospice patient from a community hospice agency. Students attended an interprofessional team meeting and made 3 independent home visits. Each visit was followed by a debriefing discussion with hospice preceptors, who welcomed the addition of the film, as it extended the focus beyond the patient to include family dynamics and the effects of death on caregivers. Oftentimes, the film evoked strong emotions in students who were reminded of their own loss of a family member or former patient. During these debriefing discussions, students were able to express their conflicted feelings and fears regarding terminally ill patients and their families.
In this pilot, third-year students (n = 403) completed a typical course evaluation after their family medicine rotation, to which we added questions about the film and discussion prompts.8 Most agreed or strongly agreed the materials helped them to better understand the challenges and rewards of caregiving (389/403; 97%) and felt they gained insight into the experiences of end-of-life care for caregivers (322/338; 95%). Over half reported that a caregiver was present during one of their home visits (231/403; 57%) and reported speaking to the caregiver about his or her personal experiences (231/403; 57%).
Similarly, pilot programs were developed to assess the value of the educational tools for the graduate tier at family medicine and internal medicine residency programs at 4 partner teaching hospitals from November 2014 to September 2016. Because these pilots were only 1 to 1.5 hours long, they fit easily into the residents’ schedules. All of the pilots included the film and guided discussions, with some sites using select clinical cases and others incorporating structured clinical encounters. From among all 4 sites, 49 family medicine and 46 internal medicine residents (n = 95) completed program evaluations immediately following the film and discussion. Of these 95 residents, 92 (97%) agreed or strongly agreed the pilot increased their awareness of issues caregivers face and their knowledge of caregivers’ needs. Almost all agreed or strongly agreed that the discussions were relevant to their practice (94; 99%) and that the pilot was valuable (92; 97%). Lastly, 94 (99%) agreed or strongly agreed the pilot increased their comfort level in communicating with caregivers.
One month later, 63 residents completed a follow-up survey, in which 60 (95%) agreed or strongly agreed the pilot helped them build stronger relationships with caregivers. All (63; 100%) agreed or strongly agreed they felt better prepared to educate and guide caregivers through the caregiving process, while 60 of 62 (97%) agreed or strongly agreed the pilot improved their understanding of the day-to-day challenges patients face with home care. In addition, 61 of 63 (97%) agreed or strongly agreed the pilot helped them identify caregivers’ needs. In the free-text section of the surveys, residents wrote comments such as “This program helped me think more broadly as I provide care to patients and encouraged me to consider how medical issues affect caregivers”; “I did not realize the time and energy caregivers use to provide care to loved ones, it made me realize physicians need to take time to care for caregivers, as well”; and “Great presentation that provided perspective on what caregivers go through.”
Undergraduate and graduate faculty reported finding the pilots valuable. We have reported the results from a focus group of undergraduate preceptors, in which they validate the pilots’ ability to increase students’ awareness of caregivers, elsewhere.8 Additionally, anecdotal evidence from graduate faculty indicates they too found the pilots worthwhile. Faculty from NEOMED and its 5 partner teaching hospitals have made the pilots a permanent part of their curricula.
After completing the pilots and receiving feedback from faculty, we built a website for the project in conjunction with NEOMED for the purpose of making the project freely accessible to other institutions.9 The website provides links to the film, all of the companion educational tools, and the feedback and assessment surveys. Because these materials are open access, tracking the scope of their dissemination is difficult. The Portal of Geriatric Online Education (POGOe), a peer-reviewed site for educational products in geriatrics, now includes a link to the project on its website as well.10
When presenting the project at local and national professional meetings, steering committee members report receiving positive responses from audience members, and audience members have expressed interest in implementing the project at their institutions. Members of the steering committee also report a culture change at Summa Health, the project’s major health care partner. Positive results include heightened awareness of caregiving issues among residents, increased referrals to transition coordinators, and increased participation of residents in team-based discharge planning.
Future goals for the Building Caregiver Partnerships Through Interprofessional Education project include conducting an outcome evaluation to identify and examine clinical outcomes. As a start, we have mapped the project’s objectives to the Accreditation Council for Graduate Medical Education milestones for family medicine and internal medicine (available on our website9), but we have yet to evaluate the resident tier of our educational program based on these milestones. Although we have evidence that medical students and residents who completed the project (via the pilots mentioned above) are satisfied with it and that residents have confidence in their ability to collaborate with caregivers, we also plan to evaluate whether communication increases and quality of care improves as a result of the project. In addition, we would like to include caregivers in the evaluation to examine whether they believe the project increases communication between providers and caregivers, addresses the caregivers’ needs and values within care plans, and improves their experiences.
Pilots suggest that Building Caregiver Partnerships Through Interprofessional Education may be flexible, transportable, and applicable to a variety of learners and settings. Because caregiving is best addressed from a team approach, as a next step, we would like to pilot the project at other health professions programs. To gauge the other institutions’ interest in the project, we held forums with health professions faculty at 2 local universities to obtain information on their existing caregiver curricula and the educational needs of their learners. After reviewing the project’s materials, the health professions faculty identified a need for more training on caregiver issues in professions besides medicine, such as nursing, social work, and physical, occupational, and speech therapy. Thus, another future goal is to run pilots in these respective professions. Our ultimate hope is for the curricula to be integrated into all health professions programs to prepare health care providers for the rewarding work of building supportive relationships with patients and their caregivers.
The authors would like to thank the families who shared their stories in the film and the members of the interprofessional steering committee who guided the project.
1. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: A clinical review. JAMA. 2014;311:1052–1060.
2. Institute of Medicine. Retooling for an Aging America: Building the Health Care Workforce. 2008.Washington, DC: National Academies Press.
3. AARP; National Alliance for Caregiving. Caregiving in the U.S. 2015. http://www.caregiving.org/caregiving
. Published 2015. Accessed March 25, 2019.
4. McMillan SC. Interventions to facilitate family caregiving at the end of life. J Palliat Med. 2005;8(suppl 1):S132–S139.
5. Famakinwa A, Fabiny A. Assessing and managing caregiver stress: Development of a teaching tool for medical residents. Gerontol Geriatr Educ. 2008;29:52–65.
7. Law M, Kwong W, Friesen F, Veinot P, Ng SL. The current landscape of television and movies in medical education. Perspect Med Educ. 2015;4:218–224.
8. Baughman KR, Palmisano B, Sanders M, et al. Use of film to sensitize medical students to issues of family caregiving. PRiMER. 2019;3:14.
9. Northeast Ohio Medical University College of Medicine Office of Palliative Care. Building caregiver partnerships. http://www.neomed.edu/medicine/palliativecare/building-caregiver-partnerships
. Accessed March 25, 2019.
10. Palmisano B, Sanders M, Radwany S, et al. Building caregiver partnerships through interprofessional education. POGOe. https://pogoe.org/productid/21916
. Published December 12, 2016. Accessed March 25, 2019.