Improving Support for America's Hidden Heroes

A Research Blueprint

by Terri Tanielian, Kathryn E. Bouskill, Rajeev Ramchand, Esther M. Friedman, Thomas E. Trail, Angela Clague

This Article

RAND Health Quarterly, 2018; 7(2):9

Abstract

The United States is home to more than 21 million veterans, many of whom deployed to support combat operations around the globe during their military service and sustained service-related conditions or disabilities. Supporting these wounded, ill, and injured warriors once home are millions of informal caregivers—individuals who provide unpaid support with activities that enable the service member or veteran to live in a noninstitutionalized setting. In this study, researchers describe elements of a research blueprint to inform future efforts to improve support for military and veteran caregivers. To construct this blueprint, researchers inventoried currently available research on caregiving for disabled adults and children and gathered stakeholder input by conducting a survey and facilitating an online panel. The study highlights the need for more studies that examine how military and veteran caregiver needs evolve over time, how programs are working, and how caregiving affects specific subgroups. The resulting blueprint should serve as a guide for the caregiver support community to use in prioritizing and facilitating future research.

For more information, see RAND RR-1873-TEDF at https://www.rand.org/pubs/research_reports/RR1873.html

Full Text

In 2014, with funding support from the Elizabeth Dole Foundation, the RAND Corporation published Hidden Heroes: America's Military Caregivers, which shed light on the number and characteristics of, as well as the burden faced by, the estimated 5.5 million military and veteran caregivers who provide informal care and support to current and former U.S. service members (Ramchand, Tanielian, et al., 2014).1 The study also offered recommendations for ensuring better support for these caregivers in the future. Among the recommendations was a call for additional research to improve understanding of how caregiver and care recipient needs evolve over time; how well specific programs for caregivers and care recipients are working; and how caregiving differentially affects specific subgroups, including children. The Elizabeth Dole Foundation asked RAND to develop a research blueprint to guide future investments that would improve the well-being of caregivers. The blueprint metaphor is useful for describing future caregiving research. Specifically,

  • In the construction world, a site plan shows the footprint of the building on a lot, or how it fits onto a given space. In caregiving research, an analogous construct is research that examines how caregiving and caregivers fit within the context of society at large.
  • A floor plan describes the relationships between rooms and spaces on one floor of the building. For caregiving research, an analogous construct is research that examines the impacts of caregiving on caregivers, care recipients, and their families.
  • An elevation shows the building from the outside. In caregiving research, an analogous construct is research that examines how external factors may influence caregiving.

Assembling Expertise

We sought data from multiple sources and experts. Figure 1 shows our overall approach.

Figure 1. Analytic Strategy

Analytic Strategy

We took advantage of opportunities offered at the “Empowering Hidden Heroes: Pathways to InnoVAtion” summit, cosponsored by the Elizabeth Dole Foundation and the U.S. Department of Veterans Affairs, which took place in Washington, D.C., in September 2016. Attendees included the range of stakeholders whose input we sought: policy and program officials, government officials, researchers, clinicians, funders, advocates, care recipients, and caregivers. We attended multiple presentations and conducted a free-listing exercise that involved inviting attendees to generate research questions and priorities. In addition, we administered a survey to attendees to assess perceptions about specific priorities. Attendees included individuals and organizational representatives from the military and veteran caregiving stakeholder community specifically, as well as some representatives from the caregiving support community more broadly.

We integrated information from these sources to develop a list of caregiver-related research objectives. We then reviewed studies evaluating these objectives, looking at both military and veteran caregivers and informal caregivers more broadly. Finally, we used ExpertLens™—a RAND-developed, web-based tool that assesses stakeholder consensus—to elicit ratings of each research objective from panels of stakeholders that included representatives from the stakeholder groups listed above. We included three panels: one comprising military and veteran caregivers; one comprising caregiving researchers, government officials, and funders; and one comprising program leaders. The second and third groups included individuals from the military and veteran caregiver support community, as well as the caregiver support community more broadly.

Table 1 lists the ten research objectives we developed, organized by major focus.

Table 1. Research Objectives and Organization of the Blueprint

Blueprint Component Focus Research Objectives
Site plan Caregivers as members of society

Describe caregivers.

Quantify the societal cost savings attributed to caregiving.

Floor plan Impacts of caregiving on caregivers, care recipients, and their families

Document the effects of caregiving on caregiver outcomes.

Assess the consequences of caregiving on the children of caregivers.

Document the effects of caregiving on care recipient outcomes.

Assess how the needs of care recipients change over time.

Examine factors associated with caregiver and care recipient harm.

Elevation External factors that influence caregiving

Identify strategies for making effective programs available to more caregivers.

Evaluate the effectiveness of programs and policies for ensuring caregiver well-being.

Identify effective programs and policies to support caregivers' ability to provide care.

Describing Our Research Objectives

In this section, we describe each objective and summarize observations from our five data sources about the objective's importance, cultural acceptability, implementation cost, and learning potential, as well as the effectiveness of current research in that area.

Site Plan

Who are the nation's military and veteran caregivers? Existing published studies, including RAND's own, describe the unique attributes of the nation's military and veteran caregivers, highlighting the important ways in which they differ from the broader population of caregivers in the United States. However, stakeholder participants pointed to gaps in the existing knowledge about certain groups of military and veteran caregivers, as well as caregivers more broadly—for example, children, caregivers for whom English is not a first language, male caregivers, caregivers with preexisting or chronic medical conditions, college-aged caregivers, caregivers with disabled children, and caregivers of those who served in the military before the terrorist attacks of September 11, 2001 (9/11). While this objective was not rated as very important or of high learning potential among our stakeholders, it is likely that, as the needs of care recipients change, demographic trends shift, and the landscape of care for families continues to transform, describing caregivers will become increasingly important.

What societal cost savings can be attributed to caregivers? Caregivers play a critical role in supporting the needs of their care recipients, often enabling them to live in noninstitutionalized settings. The reliance on informal caregivers often defrays costs associated with formal caregiving. Smaller families, an increasingly aging population, and growing participation of women in the workforce are among the trends that will change not only who assumes the role of a caregiver but also the landscape of cost savings attributed to caregiving. Our stakeholder participants rated this objective as very important, noting that it should also include the expenses that military and veteran caregivers must bear; in other words, the research should include the trade-offs of caregiving. Stakeholder participants noted that caregivers themselves do not stand to benefit in their daily lives from research on this objective. However, understanding who military and veteran caregivers are and the benefits they convey to society can help guide programs and policies for caregivers that would lead to a more direct effect.

Floor Plan

How does caregiving affect caregivers? While several studies have documented the short-term impact of caregiving for those supporting individuals with specific age-related health conditions (such as dementia), little is known about the longer-term impact of caregiving on military and veteran caregivers in particular. Some stakeholder participants felt more was known about this topic than about other issues. However, they noted that understanding how caregiving affects caregivers could help inform programs and policies designed to mitigate any adverse effects. In addition, caregivers felt that research could help them “tell their story,” noting that more public education and public awareness are needed.

Many panelists mentioned the importance of focusing on health, employment, and family well-being outcomes. Health, especially mental health, was prominently highlighted. Employment issues meant loss of income for some; for others, it meant the loss of a job opportunity or having to leave a much-valued position. Issues related to family functioning included family strain, divorce, and abuse.

One caregiver commented that there were also good consequences of caregiving, reminding us that studies should include the full range of caregiving effects, both positive and negative.

How does caregiving affect the children of caregivers? We could find no published studies about how caregiving affects a caregiver's children, but all of our stakeholder participants, particularly those in the caregiver panel, felt it was a vital topic, making this a high priority for future research. Panelists felt that the issue had the following aspects that merited attention: children directly serving as caregivers, the impact of being a child in a home with someone (usually a parent) caring for an individual with a mental health issue, the impact of caregiving on parenting and the associated effect on children, and both short-term and long-term effects of caregiving on children.

Children were viewed by many as “the forgotten secondary caregivers.” Caregivers raised the topic of how children are affected by living in homes in which caregivers (usually their parents) are caring for someone with a mental health condition. Discussion of this topic often overlapped with the effects of caregiver parenting. Here, issues included a child competing for attention and the parent not meeting societal expectations, such as attending outings or field trips.

Over the short term, the effects of being the child of a caregiver were reflected in school performance, attachment issues, socialization, adverse behavior, and mental health. Panelists were not specific about the long-term outcomes of greatest interest, but the need for longitudinal research was highlighted, especially by program leaders, even while acknowledging that such research would be costly.

There was no agreement among stakeholders about whether it would be culturally acceptable to conduct research on the impact of caregiving on children. While some found the research objective too important to overlook, others thought that some parents might be unwilling to share insights about their children for fear of being criticized.

How does caregiving affect care recipients? Caregivers play an essential role in supporting the recovery and reintegration of our wounded, ill, and injured veterans by helping coordinate medical care, administer medications, and provide supportive environments. Some research has been done to examine the impact of caregiving on care recipient outcomes. However, the majority of that research has focused on short-term outcomes, and there is a limited understanding of the long-term outcomes; therefore, more studies are needed, particularly for military and veteran caregiving. ExpertLens participants saw this question as critical for justifying continued support for programs and services for caregivers. One panel member noted, “We need to be able to show [the benefit of caregiving for care recipient outcomes] to make the case for continued and increased funding.” Furthermore, program leaders commented, “This would be useful in designing programs for support”; and “If resources are to be increased that are targeted to caregivers, there must be strong evidence of need and impact.” One leader summed it up as follows: “We are in an outcomes-driven world. Documenting the outcomes is critical.”

Some program leaders felt that much is already known about this topic, but they observed that much can be learned about how to improve the mental health and quality of life of military families. In particular, they saw the “journey” of post-9/11 veterans and their caregivers as a valuable source of baseline knowledge. The need for longitudinal research was again highlighted. Some program leaders felt that this topic might be sensitive because of the potential perceptions associated with caregiving (e.g., that caregivers may have lower productivity in the workplace) and needing or receiving care.

How do care recipient needs change over time? As individuals age or recover, their needs and demands for caregiving may change, and this may affect the duties and strain on the caregiver. However, only two studies published to date have examined how care recipients' needs change over time. This topic was widely viewed as extremely important among our stakeholders; research in this area could, for example, ensure that caregiver skills and knowledge keep pace with the changes in care recipient needs over time. Several program leaders felt that the focus should be on the long-term needs of different populations because “these needs might vary greatly by type of injury, type of care, and myriad other factors.” Along these lines, one caregiver thought that society is more accepting of a Vietnam-era veteran needing care than a post-9/11 veteran, which is likely tied to a perception that older individuals require such support. The idea of a veteran in his or her 20s or 30s needing a caregiver seemed overwhelming and potentially expensive in the long run, but given the age of most post-9/11 veterans, more research on this topic is needed.

What factors are associated with caregiver and care recipient harm (that is, any situation in which a care recipient is abusing the caregiver or vice versa)? Fraud, harm, and abuse are often unpopular topics of discussion, but research with civilian populations indicates that this area deserves serious attention. Understanding the extent to which these issues occur and why they occur is important for safeguarding caregivers and care recipients and minimizing adverse consequences. But the effort is complicated by the stigma associated with admitting that a caregiver or care recipient is abusive in some way. Program leaders thought that getting honest answers about abuse would be prohibitively difficult but that people would likely self-report if they felt something good would result and the information was confidential. One leader summed up the potential for work in this area by noting that “we can actually make a huge difference in five years by adding this research goal into the mix.” However, because of the sensitive nature of this topic, some felt that original, potentially expensive studies would be needed.

Caregivers and program leaders did not agree about whether to study medical fraud among caregivers and recipients. As an example of potential fraud, some noted that because a family could lose medical benefits and payments when a care recipient's health improves, that could be a disincentive for improved health. Stakeholders also acknowledged that it is very disruptive to a family to take away the stipend of a care recipient if his or her health improves. Losing benefits was a frightening prospect for caregivers, although all caregivers said that what they wanted most was for the health of their care recipient to improve. Thus, to ensure a full understanding of the risks and consequences associated with these issues, further research is necessary.

Elevation

What are strategies for making effective programs more accessible to more caregivers? Few studies have focused on the accessibility of caregiver programs that provide training, peer support, or health services, and no research has been done to understand the efficacy or effectiveness of workplace policies to support caregivers. Program leaders suggested that social media would be the most effective way to reach caregivers. Caregivers suggested a broader range of ways to learn about programs, including social media, word of mouth, sporting events, retreats, peer support networks, and Internet searches, among others. Furthermore, caregivers noted that a program might be accessible but not always available (e.g., there is a waiting list). They also expressed concerns that caregivers might be reluctant to use such programs because doing so may suggest that the caregiver could not handle his or her responsibilities. However, there was general agreement that this was an important topic for future research.

How effective are programs and policies for ensuring caregiver well-being? Knowing what works and for whom is an important consideration not only for ensuring that caregivers' needs are being met but also for developing sound policies and funding worthy efforts. Many programs and policies have been promulgated in health care settings, in the workplace, and in the social support arena with the intent of improving caregiver well-being.

Very little of the existing research focused on proving the efficacy of specific caregiver interventions. Instead, the vast majority of research was on the effectiveness of programs enhancing caregivers' abilities to provide care, including informal and formal education and training, assessments of caregiver knowledge and information programs, and programs using new technologies (e.g., telehealth, smartphones) to help caregivers with caregiving tasks. About one-third of the literature on program effectiveness focused on care recipients with dementia.

How effective are programs and policies for supporting caregivers' ability to provide care? Although this question has been fairly well studied in the past, caregivers felt that they did not have the information they needed to provide required care and were unaware of research on the effectiveness of key programs. They also criticized the ongoing, exhausting, and often disorganized bureaucratic aspects of programs and policies.

Considering Cross-Cutting Issues

Some issues cut across the research blueprint. Many stemmed from the lack of studies on specific subpopulations of caregivers, especially children and men. Research on these populations should consider how caregiving affects them in ways that may be unique or different from the impact experienced by adults (in the case of children) and by women or spouses (in the case of men, some of whom may be providing care for friends). Studies should also specifically address the efficacy and effectiveness of programs or policies for these groups.

A second cross-cutting concern was the lack of research focused on those caring for a particular type of care recipient—for example, those with a brain injury. A large longitudinal study currently being conducted by the U.S. Department of Defense to examine the caregivers of service members who experienced a traumatic brain injury during the post-9/11 era will provide valuable insights, but additional research will be needed to ensure that all health issues affecting caregivers are studied.

Using the Blueprint

Ideally, the research blueprint we have created will become a common reference point for the various stakeholder communities as they work toward a common goal of improving support for military and veteran caregivers. We suggest the following three strategies for gaining support for, adopting, and implementing the blueprint.

Establish partnerships. The military and veteran caregiver stakeholder community can partner with some of the many organizations that are interested in research on various aspects of caregiving. For example, the National Academies of Sciences, Engineering, and Medicine's Committee on Family Caregiving for Older Adults released a report in September 2016 outlining recommendations aimed at addressing the health, economic, and social issues facing family caregivers of older Americans; many of the recommendations are also relevant to military and veteran caregivers because many of their care recipients are elderly (National Academies of Science, Engineering, and Medicine, 2016).

Among other recommendations, the committee suggested that the U.S. Department of Veterans Affairs and the U.S. Department of Health and Human Services create a public-private, multistakeholder fund for research and innovation to accelerate the pace of change in addressing the needs of caregiving families. The research objectives that we evaluated and arrayed within this blueprint can all be nested within these larger objectives and used as a basis for informing how the Department of Veterans Affairs and Department of Defense in particular can support and implement this recommendation.

Additional partnerships and consortia with other caregiver organizations could be established to call for increased research investment, encourage the research community to focus on caregiving, and demand more evidence-based decisionmaking for future caregiver support programs and policies.

Convene a military and veteran caregiver research summit. A research summit could be convened to focus on cultivating new research studies designed around elements identified in this research blueprint. Participants could include researchers from multiple disciplines, as well as caregiver representatives.

Create a research center of excellence. A research center of excellence within the military and veteran caregiving community could foster the strategic pursuit of the research blueprint and begin to address the knowledge gaps outlined in this report, thus promoting better support for military and veteran caregivers in the future.

References

National Academies of Sciences, Engineering, and Medicine, Families Caring for an Aging America, Washington, D.C.: National Academies Press, 2016. As of January 10, 2017:
http://www.nationalacademies.org/hmd/Reports/2016/families-caring-for-an-aging-america.aspx

Ramchand, Rajeev, Terri Tanielian, Michael P. Fisher, Christine Anne Vaughan, Thomas E. Trail, Caroline Batka, Phoenix Voorhies, Michael Robbins, Eric Robinson, and Bonnie Ghosh-Dastidar, Hidden Heroes: America's Military Caregivers, Santa Monica, Calif.: RAND Corporation, 2014.
http://www.rand.org/pubs/research_reports/RR499.html

Note

  • 1 We use the term military and veteran caregiver to be inclusive of both those caring for a current member of the military (including active-duty, reserve, and National Guard members) and those caring for a former member of the military (commonly referred to as a veteran).

This study was sponsored by the Elizabeth Dole Foundation, and the research was conducted by RAND Health.

RAND Health Quarterly is produced by the RAND Corporation. ISSN 2162-8254.