According to Families Caring for an Aging America, a 2016 report by The National Academies of Sciences, Engineering, and Medicine (NASEM), at least 17.7 million individuals in the United States are family caregivers for an older adult. By 2060, there will be approximately 98.2 million older adults in the United States (U.S. Census Bureau, 2017), and the number of family caregivers will increase.
In 2012, the Home Alone: Family Caregivers Providing Complex Chronic Care study by the AARP Public Policy Institute and United Hospital Fund shed light on the fact that caregiving entails increasing medical and nursing tasks that caregivers are typically unprepared to perform (Reinhard, Levine, & Samis, 2012). To improve support for family caregivers, AARP developed and promoted the Caregiver Advise, Record, Enable (CARE) Act, requiring hospitals to record upon admission the name and contact information of a caregiver, and then engage the caregiver in the appropriate training on the medical and nursing tasks included in the discharge plan (Reinhard & Ryan, 2017). The CARE Act has become law in 40 U.S. states and territories.
As highlighted in Families Caring for an Aging America, clinicians must learn to recognize family caregivers as integral members of the health care team who “may need information, training, care, and support” (NASEM, 2016, p. 262), and health care overall is due for a paradigm shift from person-centered care to person- and family-centered care. Among the report's recommendations are the strengthening of “the training and capacity of health care and social service providers to recognize and to engage family caregivers and to provide them evidence-based supports and referrals to services in the community” (NASEM, 2016, p. 10). The report calls for the federal government to collaborate with professional societies; education programs; licensure, certification, and accrediting bodies; and other organizations to develop and enforce competencies that help health care professionals identify, assess, and support caregivers (NASEM, 2016).
There is insufficient information regarding formal educational opportunities and, to the best of the current authors' knowledge, no research on nurses' interest in such education. Therefore, a three-phase market analysis was performed from December 2017 to March 2018 to evaluate existing courses designed to enhance competencies for partnering with family caregivers, ascertain health care professionals' perceptions of their own role in supporting caregivers, and explore opportunities for enhancing preparation of health care professionals to support family caregivers. The primary intention was to inform the development of educational offerings; however, the results also suggest important implications for informing health policy related to family caregiving.
The current study comprised three phases: (a) web searches for programs that prepare health care providers to work with family caregivers; (b) online surveys; and (c) telephone interviews. Data were analyzed descriptively, and response distributions and descriptions of the results are presented. Institutional Review Board approval was obtained from the University of California Davis.
To assess the availability and accessibility of courses on caregiving for health care professionals, a basic internet search on Google® was performed and results were cross-referenced using Bing. Search terms (with and without quotation marks) included family caregiver education, family caregiving education, and nurse family caregiver program.
Online surveys were conducted with two groups: (a) nurses at a major medical center in Northern California and (b) chief nursing officers (CNOs) at hospitals in California. Nurses were asked about the prevalence, importance, and needs of family caregiving support, needs, and gaps using 4- and 5-point Likert scale questions. The CNO survey was brief and included two questions about the importance of family caregiving education.
Telephone interview participants were recruited from the survey of nurses and asked if they would be willing to participate. Using open-ended questions, nurses were asked to comment on benefits of improved skills in supporting family caregivers, willingness to pay for education, and terminology. The terminology questions included: “What would you call a nurse or nurse manager who specializes in family caregiver support?” and “Do you think family-centered care and family caregiver support are identical concepts? If not, what is the difference?”
Internet search results yielded an overwhelming number of “hits.” For example, a Bing search for family caregiver education (no quotes) yielded approximately 55,000,000 results, whereas a search for interprofessional caregiving competency (no quotes) offered 171,000 results.
These searches revealed that most family caregiver courses are directed toward family caregivers themselves, not health care professionals. These courses—offered by a range of nonprofit organizations and health care institutions—are generally free or low-cost and may be offered online. Direct care workers, including home health aides, are a secondary audience, and a small number of non-degree online courses designed for this group were found. A handful of courses for clinicians also appeared; most follow the professional development model, with brief sessions delivered online, on-site, or at conferences. Other courses use an organizational membership model. One example is Nurses Improving Care for Healthsystem Elders (NICHE), an international nursing education and consultation program developed at New York University's Rory Meyers College of Nursing with the aim to improve geriatric care in health care organizations worldwide. NICHE provides resources and tools including webinars and continuing education courses to member institutions. Academic programs that emphasize caregiving are scarce. One undergraduate certificate program is in Georgia—the Rosalynn Carter Institute for Caregiving—and offers a Caregiving Issues and Management Certificate Program that targets caregivers and health care professionals.
The response rate for the survey of nurses was approximately 11% (n = 206). When asked about care in their practice area, 64% (n = 131) of respondents reported that nurses “very frequently” or “frequently” teach caregiver skills; 88% (n = 181) reported that family caregiver support is “very important” or “important”; and only 39% (n = 81) of respondents believed that family caregiver support is provided “extremely effectively” or “very effectively.”
Overall, terminology was found to have little impact on responses. The only exception was “family caregiver assessment,” which was rated slightly less important than the other three (Figure 1) and less effectively provided: 32% (n = 65) of nurses believed that assessment was conducted “extremely effectively” or “very effectively,” and 19% (n = 40) said it was provided “slightly” or “not at all effectively.” By contrast, 40% (n = 83) believed that “family-centered care” was offered “extremely effectively” or “very effectively” and only 11% (n = 23) said it was offered “slightly” or “not at all effectively.” Paradoxically, when asked what topics would help nurses improve their skills, the most common answer was “assessment of family caregivers' capacity to provide care” (selected by 65% [n = 134] of respondents).
Nurses' views on the importance of supporting family caregivers.
The survey of CNOs (n = 10, 27% response rate) (Figure 2) showed that all respondents deemed family-centered care to be “very important” in their institution. Family caregiver assessment and education, although deemed valuable, were seen as less salient, with seven respondents considering them to be “very important” and three respondents considering them to be “important.” When asked if their institution would benefit from employing health care professionals with a specialization in family-centered care and caregiver support, all 10 respondents answered “yes.”
Chief nursing officers' views on the importance of supporting family caregivers.
Comments were optional. One respondent wrote:
Certainly, we would like nurses, social workers, MDs [medical doctors] trained in family-centered care and support. I am unclear if you are asking if we would hire additional people to do this work in addition to our caregiver team. In this financial environment, I think that would be difficult.
Another participant commented that her institution had added staff to work with caregivers, and found that this addition, which she qualified as “amazing,” was altering “the way we approach changes in healthcare.”
Of the 206 survey respondents, 35 agreed to participate in a follow-up telephone interview and provided contact information; of these, 14 completed interviews. Nurses identified the following perceived benefits of improved skills in supporting family caregivers: enhanced outcomes for patients; decreased hospital readmissions and follow-up visits and calls; improved patient satisfaction; improved role clarity for nurses; greater ease with having uncomfortable conversations with patients; and decreased burden at discharge.
When asked how they would refer to a nurse or nurse manager who specializes in family caregiver support, nurses identified the following terms: “ombudsman,” “family caregiver support staff,” “outreach coordinator,” “next step nurse,” “care coordinator,” “care navigator,” “transitional care nurse”, “discharge planner,” “case manager,” “palliative care nurse,” and “advocate.”
Participants differed on their thoughts about the actual role. Although one participant commented, “It's not a specialty. It is part of basic nursing care,” another said, “I don't see it as a nursing role. It is more of a social worker role.” Other respondents emphasized the absence of such a role. “We don't have that now,” one nurse said. “If we did, I would see it being called a ‘family caregiving specialist’ or ‘family caregiving developer’ or ‘family caregiver champion.’” Another said, “A name doesn't currently exist.”
Definitions of family-centered care versus family caregiver support varied greatly. One participant believed that “family-centered care is involving everyone in care, [and] family caregiver support is providing care and support to family members separate from the patient.” Another participant said, “family-centered care takes place in an acute setting while family caregiver support is outpatient or home health.” One believed that “family caregiver support should be a part of family-centered care.”
Regarding willingness to pay for education that would enhance their skills in supporting caregivers, two participants said yes, four said no, and five said potentially. Participants who were not willing to pay added, “I wouldn't pay extra because I think it should be a standard part of education.” Another stated that she is already an expert. Two of five participants who said they might pay added that they would only do so if moving into a specialized role that required these skills.
Currently, family caregiver education is primarily understood to be education for caregivers themselves; specialized education for health care providers is scarce, and those seeking courses through a web search would encounter thousands to millions of irrelevant pages.
The current surveys revealed that demand among health care professionals for this type of education was not substantiated. In other words, evidence was not found among the sample that nurses are actively engaging in or demanding this type of education. The drive to increase involvement of health care professionals with family caregivers may be coming from outside the population of practicing nurses: “bottom up” from caregivers who want more support and “top down” from legislators who passed the CARE Act and critical thinkers at such institutions as NASEM.
Despite limited interest in further education regarding supporting family caregivers, the current authors found that nurses and nursing leaders recognize the value of offering support and the need for enhanced skills. Respondents agreed that work with family caregivers is frequent and important, yet they also stated that it is not provided effectively. This finding indicates a disconnect between values and practice, an unmet need for caregivers, and an opportunity for enhancing the skills and preparation of health care professionals.
The telephone survey, which included participants who were highly invested in the caregiving topic, revealed that there is no common language to describe a health care provider who is a family caregiving expert. Interviewees raised important questions: Is family caregiving support part of the nursing role? If yes, should it be considered part of basic nursing, an advanced skillset, or both?
Despite the feelings of adequacy expressed by nurses, the literature shows there is a gap between what the health care workforce is providing caregivers and what caregivers are experiencing. The Home Alone: Family Caregivers Providing Complex Chronic Care report (Reinhard et al., 2012) showed that caregivers are conducting complex medical tasks in the home and feel unprepared to do so. The report recommends that educators focus on reviewing current “curricula to determine where and how the importance of acknowledging, supporting and training family caregivers can be added or strengthened” (Reinhard et al., 2012, p. 36), providing programs for future health care providers to understand the needs of caregivers.
Although some respondents stated that attention to families is a “basic” part of nursing education, currently, no national competencies are related to working with family caregivers. The American Association of Colleges of Nursing (2008) Essentials for Baccalaureate Nursing and the National League for Nursing (NLN; 2018) Commission for Nursing Education do not specifically address family caregiving. To fill this gap, faculty at the Betty Irene Moore School of Nursing are partnering with the NLN to operationalize a set of competencies for health care providers as a touch-point to ensure nursing students are receiving education in the breadth of family caregiving and translating their knowledge into practice while promoting independence and well-being of the caregiver. The AARP Public Policy Institute provides excellent online resources for learning more about this topic including the Home Alone: Family Caregivers Providing Complex Chronic Care report and related reports (access https://www.aarp.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html).
For any caregiving educational program to be effective, the first priority is to address the prevailing perception among nurses that they already understand caregivers' needs. There is a gap between what caregivers learn versus what health care providers teach. The disconnect may be that the education nurses are providing is delivered in a format that is less effective or during the discharge rush when caregivers might have difficulty absorbing new information. Without return demonstration and the opportunity to ask questions, it is possible that caregivers' level of comprehension may not translate into being able to apply the new knowledge when they are at home without health care professionals by their side. If family caregiver preparedness is to be improved for complex family care tasks, the proper timing and amount of education that nurses provide must be determined. A single overview at discharge may be insufficient for older adults and family caregivers.
The current study has several limitations. First, a convenience sample was used, and the sample size further limits generalizability of the findings. Although the telephone interviews provided valuable information, it is likely respondents were not a representative sample of the nursing workforce, as they tended to volunteer because they already had an interest in family caregiving.
Implications for Policy
The CARE Act and the move toward family-centered care have made working with family caregivers a non-negotiable priority. The CARE Act sets a new expectation. Full enactment of the CARE Act will require organizational commitment and staff preparation. Additional strategies are recommended to enhance the capacity of health care professionals to partner with family caregivers through all stages of care.
Terminology may be a good place to start. As mentioned previously, there is no readily understood title to describe a health care professional with a specialized set of skills for supporting family caregivers. Designating the role with a specific title would enhance awareness and use of this expertise. Second, to make roles and responsibilities clearer and ensure baseline competency in partnering with family caregivers, family caregiving competencies should be implemented in professional standards, with these competencies incorporated in such licensing examinations as the National Council Licensure Examination for RNs. Third, as has been reported in the literature, the term “family caregiver” presents multiple challenges. Not all caregivers are family members and not all family members who are engaged in care self-identify as caregivers (Navaie, 2011). To ensure that patients are given the freedom to identify anyone of their choice as a designated caregiver, policies concerning electronic health records that define how staff identify and document the designated caregiver are recommended. Fourth, to further explore health care providers' understanding of the importance of family caregiving, future research is needed regarding their awareness of the CARE Act and the extent to which hospitals are implementing this law. Finally, incentives for encouraging funding of this education must be explored. Researchers should evaluate whether health care providers' consistent support of caregivers helps improve the ability of caregivers to thrive in this role as they contribute invaluable support to older adults.
- American Association of Colleges of Nursing. (2008). The essentials of baccalaureate education for professional nursing practice. Retrieved from http://www.aacnnursing.org/portals/42/publications/baccessentials08.pdf
- National Academies of Sciences, Engineering, and Medicine. (2016). Families caring for an aging America. Washington, DC: The National Academies Press.
- National League for Nursing. (2018). Advancing care excellence for caregivers. Retrieved from http://www.nln.org/professional-development-programs/teaching-resources/ace-c
- Navaie, M. (2011). Accessibility of caregiver education and support programs: Reaching hard-to-reach caregivers. In Toseland, R.W., Haigler, D.H. & Monahan, D.J. (Eds.), Education and support programs for caregivers: Research, practice, policy (pp. 13–28). New York, NY: Springer. doi:10.1007/978-1-4419-8031-1_2 [CrossRef]
- Reinhard, S.C., Levine, C. & Samis, S. (2012). Home alone: Family caregivers providing complex chronic care. Retrieved from https://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/home-alone-family-caregivers-providing-complex-chronic-care-rev-AARP-ppi-health.pdf
- Reinhard, S.C. & Ryan, E. (2017, August). From Home Alone to the CARE Act: Collaboration for family caregivers. Retrieved from https://www.aarp.org/content/dam/aarp/ppi/2017/08/from-home-alone-to-the-care-act.pdf
- U.S. Census Bureau (2017, April10). Facts for features: Older Americans month: May 2017. Retrieved from https://www.census.gov/news-room/facts-for-features/2017/cb17-ff08.html