More Support for U.S. Militaries Hidden Heroes

Military Caregiver Curriculum

The Elizabeth Dole Foundation asked the RAND Corporation to develop a research agenda to guide future efforts to improve support for military caregivers and veterans. To develop the plan, researchers mapped currently available research on caregiving for adults, children, and older adults with disabilities and gathered stakeholder input through a survey and an online panel in which stakeholders assessed and discussed key research priorities for improving the well-being of military caregivers and veterans.

The analysis underscores the need for specific research on the effectiveness of caregiver and dependent programs, how caregiving affects specific subgroups, such as children, and how the needs of caregivers and dependents change over time. The resulting project provides insight for future research and should serve as a guide for the caregiver support community in setting priorities and facilitating future research.

There are currently more than 20 million veterans living in the United States, many of whom have service-connected illnesses or injuries that require ongoing support and care. The nation's “hidden heroes” support these wounded, ill or disabled veterans. They are caregivers who provide informal, unpaid support in activities that enable current and former U.S. service members to live their lives to the fullest. These approximately 5.5 million caregivers are an important part of caring for returning soldiers.

In 2014, the RAND Corporation, with funding from the Elizabeth Dole Foundation, published Hidden Heroes: America's Military Caregivers, which explored the number and characteristics of these military and veteran caregivers, as well as the burden they face in providing informal care and support.

This study was the first to comprehensively describe the population of these caregivers, their value to society, and the risks they face in their caregiving role.

The report's recommendations include a call for increased investment in research on caregivers of soldiers and veterans. In particular, further longitudinal research is needed to understand how the needs of caregivers and beneficiaries change over time, the extent to which caregiver- and beneficiary-specific programs work, and how caregiving affects specific subgroups, such as children, differently.

In response to these needs, the Elizabeth Dole Foundation asked RAND to develop a research agenda to guide future investments in improving caregiver well-being.

Elements of the plan

In the construction world, a site plan shows the footprint of a building on a plot of land, or how a building fits into a given space. In the field of caregiving research, the equivalent concept is the study of how caregiving and caregivers fit into the larger context of society.

This type of research analyzes the number of caregivers and describes who they are and who they care for. It can also measure the social benefits of caregiving, for example, by estimating the social cost savings associated with unpaid and informal caregiving.

The floor plan shows the relationships between spaces and rooms on the floor plan of a building. In caregiving studies, the equivalent concept is a study that analyzes the effects of caregiving on caregivers, cared-for persons and their families.

This may include, for example, studies that assess how the demands on caregivers change according to the needs of the people they care for and how caregiving may affect the children of caregivers. It may also examine factors related to harm to caregivers and cared-for persons (e.g., situations in which a caregiver abuses a cared-for person or vice versa).

The facade of a building is shown from the outside. In the case of caregiver research, the equivalent concept is research that examines how external factors may affect caregiver activities. These studies may, for example, identify strategies to support caregivers through new policies or programs, to make existing programs accessible to caregivers, or to evaluate the effectiveness of policies or programs.

Action Plan Stakeholders

A caregiver research program may also be envisioned. RAND researchers, with support from the Elizabeth Dole Foundation, input from key stakeholders, and a review of caregiving research to date, will act as architects and provide insight into the research needed to build the house (in this case, to better support military caregivers and veterans). The faculty members are the builders because they are responsible for conducting the research.

The owners of the research-the people who live in and benefit from the house-are the public, including the caregivers and cared-for and the people who support them. The architect must design the building with the owners' needs in mind, not his own or the developer's needs.

In developing this plan, we have pursued the same goal: to keep caregivers, the cared-for and the people who support them at the forefront, and to prioritize research that best meets their needs.

In this metaphor of plans, in addition to architects, builders and owners, we can think of program managers as suppliers who ensure that the home is built with the best materials available, and decision-makers as inspectors who ensure that the home is inspected and approved.

Gathering expert advice

To create a complete picture of the gaps in the research on military and veteran caregivers, we gathered information from a variety of sources and experts. At the September 2016 conference “Empowering Hidden Heroes: Pathways to InnoVAtion,” sponsored by the Elizabeth Dole Foundation and the U.S. Department of Veterans Affairs (VA).

Participants included a wide range of stakeholders whose opinions we wanted to hear: policy and program makers, public officials, researchers, clinicians, funders, advocates, caregivers and family caregivers. We participated in several presentations and conducted an open list asking participants to formulate research questions and priorities. We also surveyed participants to assess their perceptions of specific priorities.

We combined information from these sources and developed a list of research questions related to caregivers. We then reviewed studies that assessed these objectives, taking into account the work of military and veteran caregivers and informal caregivers in general.

Finally, we used ExpertLens™-an online tool developed by RAND to assess stakeholder consensus-to obtain stakeholder panel ratings for each research objective. Three panels were included: one comprised of military nurses and veterans, another of nurse researchers, government officials, and funders, and a third of program officials.

What should research on caregivers of soldiers and veterans focus on?

Diagram of the research process

The Plan

From the data collection, literature review, and ExpertLens panels conducted at the Summit, we assessed ten research questions and grouped them into three sections of the research design (spatial plan, master plan, and elevated landscape).

This section describes each objective as a specific research question and summarizes findings regarding the relevance of the objective, its cultural acceptability, implementation costs and learning opportunities, and the effectiveness of current research in this area. A summary of the evaluations for each dimension is provided below.

Site Map

Caregivers as participants of society

Who are the nation's caregivers of soldiers and veterans? Existing research has described the characteristics of military and veteran caregivers and highlighted significant differences between them and the general population of caregivers in the United States.

Participants identified gaps in knowledge of specific groups of military and veteran caregivers, as well as caregivers in general – for example, children, caregivers for whom English is not their first language, male caregivers, caregivers with a pre-existing or chronic medical condition, caregivers of college-age children, caregivers of children with disabilities, and caregivers of those who served in the military prior to the terrorist attacks of September 11, 2001. As caregiver needs evolve, demographic trends change, and the caregiving landscape continues to shift, caregiver characterization will become increasingly important to ensure that programs and policies are better designed to support them.

What societal savings can be attributed to caregivers? Caregivers play an important role in meeting the needs of their dependents, often allowing them to live in non-institutional settings. The use of informal caregivers often covers the costs of formal care.

Smaller families, an aging population, and the increasing participation of women in the workforce are trends that are changing not only the situation for people taking on the caregiving role, but also the cost savings associated with caring for family members. Our interlocutors noted that research in this area should also take into account the costs to soldiers and veterans, i.e., the trade-offs made in exchange for informal caregiving.

Estimates of cost savings to caregivers may vary depending on the methodologies used in the studies, but calculating these savings relative to the costs of caregiving to society is an important way to understand the contributions and sacrifices made by caregivers.

Baseline Plan

The impact of caregiving on caregivers, cared-for persons and their families

How does caregiving affect caregivers? Although several studies have documented the short-term effects of caregiving on caregivers with certain age-related health problems (such as dementia), little is known about the long-term effects of caregiving, especially on military personnel and veterans. Some stakeholders noted that understanding how caregiving affects family caregivers can help inform programs and policies to mitigate negative impacts.

In addition, caregivers felt that increased public education and awareness of the role of caregivers is needed to increase demand for research. Many interviewees mentioned the importance of focusing research on health, employment, and family well-being outcomes, such as mental health, loss of income or valuable employment, divorce and abuse, and positive outcomes.

How does foster care affect caregivers' children? We were unable to find any published studies on the effects of foster care on caregivers' children. However, all stakeholders considered this topic important and therefore a priority for future research. The topics discussed in the expert groups were: children who are direct caregivers, the impact of having a child living in a home where someone (usually a parent) cares for someone with mental health problems, the impact of fostering on parenting and the associated effects on children, and the short- and long-term effects of fostering on children.

Stakeholders disagreed on whether it is culturally acceptable to study the impact of care work on children. Some felt that the purpose of the study was too important to ignore, while others felt that some parents were reluctant to share information about their children for fear of criticism.

How does fostering affect those in need? Caregivers play a key role in supporting the recovery and reintegration of injured or ill veterans by helping to coordinate medical care, administering medications, and providing a supportive environment. Some studies have examined the impact of caregiving on caregiver outcomes. However, most of these studies have focused on short-term outcomes for civilian care recipients, and understanding of long-term outcomes is limited; therefore, more research is needed, particularly for military and veteran care recipients.

ExpertLens participants saw this as a key element in making the case for continued support of family caregiver programs and services. In particular, program managers stressed the importance of demonstrating the need for and impact of informal caregiver resources on caregivers. As one program manager put it, “if you want to increase resources for caregivers, you have to demonstrate that they are needed and that they have an impact on caregivers.”

“Stakeholders noted that there is still much to learn about how to improve mental health and quality of life for soldiers and veterans, and some stressed the need for long-term research.” Importantly, some panelists felt that this topic can be sensitive because of the stigma that caregiving can cause.

How do the needs of caregivers change over time? As people age or recover, their caregiving needs may change, which can affect caregiver tasks and pressures. However, to date only two studies have been published that have examined how caregivers' needs change over time. Our stakeholders felt that this topic was very important; for example, research in this area could ensure that caregivers' skills and knowledge adapt to their changing needs over time.

Several program managers felt that there was a need to focus on the long-term needs of different populations, as “these needs can vary considerably depending on the type of disability, the type of care and many other factors.”

Similarly, one caregiver felt that society is more accepting of a Vietnam veteran in need of care than a 9/11 veteran, which seems to be related to the perception that older people need such support. The idea of a 20- or 30-year-old veteran needing a caregiver seems overwhelming and may be costly in the long run, but given the age of most post-9/11 veterans, further research is needed on this topic.

What factors are associated with harm to caregivers and caregivers? Fraud, harm, and abuse are often unpopular topics of discussion, but research on civilian caregivers demonstrates that this field deserves serious attention. Understanding the scope and causes of these problems is important to protect caregivers and caregivers and minimize negative consequences.

However, this work is complicated by the stigma associated with admitting abusive treatment of a caregiver or cared-for person. Given the sensitivity of the topic, some panelists felt that original and potentially expensive research was needed. A subtopic of this research objective is fraud in caregiver and beneficiary care, and panelists disagreed on whether this should be studied.

Stakeholders acknowledged that if the caregiver's health improves, the family may lose their benefits, which can be very upsetting. Caregivers acknowledged that loss of benefits could lead to fraud or abuse. Therefore, further research is needed to fully understand the risks and consequences of these issues.

Altitude

External factors affecting care activities

What strategies could be used to make effective programs accessible to a greater number of caregivers? Few studies have examined caregiver education, peer support, or access to health care programs, nor have they examined the effectiveness or efficiency of workplace policies to support caregivers.

Caregivers reported that even when a program is available, it is not always available (e.g., waiting list). They also expressed concern that caregivers may be reluctant to use support programs, as this may indicate that caregivers are not coping with their responsibilities. However, participants agreed that this is an important topic for future research.

How effective are programs and policies in ensuring the well-being of caregivers? Numerous programs and policies exist to improve caregiver well-being in healthcare, the workplace, and social support. A mapping exercise identified more than 80 articles on caregiver support measures.

Most studies focused on the effectiveness of programs that improve caregivers' ability to provide care, including formal and informal training, assessment of caregivers' knowledge and information programs, as well as programs that use new technologies (e.g., telemedicine, smartphones) to support caregivers in their role.

Approximately one-third of the literature on the effectiveness of programs focuses on caregivers of people with dementia. Therefore, it is important to examine what works and for whom to ensure that caregivers' needs are met, but also to develop sound policies and fund valuable interventions for caregivers of soldiers and veterans.

To what extent do programs and policies support caregivers' ability to provide care? Although the topic is fairly well researched, caregivers feel that they do not have enough information to provide the care they need, nor are they aware of the effectiveness of research on key programs.

They also criticize the constant, cumbersome, and often disorganized bureaucracy of programs and policies. Therefore, future studies may be needed to determine the extent to which research findings have been translated into policy.

Addressing cross-cutting issues

Several issues related to the objectives of the study arose during the development of this plan. Many of these stem from the lack of research on specific subgroups of caregivers, such as children and men.

Research on these population groups should take into account how caregiving affects them in ways that may be unique or different from the experiences of adults (in the case of children) and spouses (in the case of men, some of whom may care for friends). Studies should also specifically examine the effectiveness and efficiency of programs or policies for these groups.

Another cross-cutting issue is the lack of studies focusing on different types of caregivers, such as people with brain injuries. A large longitudinal study being conducted by the U.S. Department of Defense on caregivers of soldiers who suffered brain injuries after 9/11 is providing valuable information, but further research is needed to ensure that all caregivers and their health problems are studied.

Using the Plan

The purpose of this Plan is to create a vision for future research to support caregivers of military personnel and veterans. In essence, the plan will become a guide that the community can use to prioritize and facilitate future research. It is not a manual for how research should be conducted; stakeholders can use the plan in different ways and develop their own specific activities.

Ideally, the research plan we create will become a common framework for the various stakeholders working toward the common goal of improving support for military and veteran caregivers. We recommend the following three strategies to support, adopt and implement the plan.

Build partnerships. The military and veteran community can partner with some of the many organizations interested in investigating different aspects of caregiving. Partnerships and alliances could call for greater investment in research, encourage the research community to focus on caregiving, and call for more evidence-based decision making in future caregiver support programs and policies.

Organize a research summit on caregivers of soldiers and veterans. A research summit could be held to focus on developing new research designed around the factors identified in this research agenda. Participants could be researchers and caregivers from different disciplines.

Establish a research center of excellence. A Research Center of Excellence for the Military/Veteran Caregiver Community could contribute to the strategic research agenda and address the knowledge gaps described in this report, thereby contributing to the future support of military/veteran caregivers.

Summary of stakeholder assessments

The table summarizes what we learned from all panels during the stakeholder consensus process about the importance of a particular research objective, the effectiveness of previous research on that topic, the cultural acceptability of research in that area, the cost of conducting new research, and the potential for learning from new research in that area over the next five years.

This summary table presents the median score for each dimension as high (i.e., important, effective, acceptable, inexpensive, or potentially informative) or uncertain; no target had a low median score for any dimension. The table also shows the number of articles published on each objective, allowing us to identify potential gaps and areas for future investment.