Perspectives of America's Military and Veteran Caregivers: A Qualitative Exploration

Military and veteran caregivers are hidden heroes, a term coined by RAND and the Elizabeth Dole Foundation in 2014 when the organizations partnered to produce Hidden Heroes: America's Military Caregivers (Ramchand et al., 2014). That study provided the first ever national portrait of those caring—mostly uncompensated—for wounded, ill, and injured service members and veterans in the United States. Hidden Heroes shed light on who was caring for service members and veterans with physical and mental health conditions and elucidated how caregiving affected those caregivers. Subsequent changes, such as expanded programs available to support military and veteran caregivers, the aging of the veteran population, and the coronavirus pandemic, call for new examination of military and veteran caregivers and the services available to support them. America's Military and Veteran Caregivers: Hidden Heroes Emerging from the Shadows (Ramchand et al., 2024) provides a new examination of America's hidden heroes by presenting findings from the 2023 RAND Caregiving Survey and the 2022 RAND Veterans Survey. This study supplements that quantitative research with findings from qualitative interviews.

Approach

Thirty-eight qualitative interviews were conducted between December 2023 and February 2024. In their own words, the interviewed military and veteran caregivers provided rich descriptions of their experiences, complementing the survey findings with illustrative anecdotes that deepen our understanding of the challenges and joys of caregiving and elucidate opportunities to improve supportive services.

Key Findings

In discussing their activities, these caregivers highlight aiding care recipients with a broad array of daily tasks that they require, often facing challenges in doing so. These challenges include balancing caregiving with other priorities and commitments; managing care recipients' health-related conditions and needs; financial, emotional, and physical struggles; and difficulty accessing respite and navigating health care systems. Most caregivers reported being able to access at least some of the diverse health care and social services available to support themselves and/or care recipients. Some caregivers mentioned continued unmet needs, often driven by eligibility issues, and facing other obstacles, particularly related to a lack of information regarding services, service accessibility (especially in rural areas), and perceived quality of care. They also noted myriad informal and formal supports they lean on at the individual, interpersonal, institutional, and community levels, most commonly citing support received from family and friends.

Caregivers also discussed their identities, feeling both similar to and different from other caregivers for varying reasons. They felt similar to others based on shared caregiving experiences but noted differences based on achieved characteristics (such as education and employment) rather than ascribed characteristics (such as race and ethnicity or gender identity). Interviewees were mixed in feeling represented by media portrayals of caregivers; some shared that they did not often come across stories that embodied their experiences. Caregivers also discussed interactions with health care professionals, often citing strategies they employed to ensure that they were respected and understood, although some reported experiencing negative interactions.

Caregivers discussed economic impacts they faced, demonstrating a great deal of variability in terms of employment statuses and in whether they were planning for the future or had access to the resources necessary to fulfill future caregiving responsibilities. Even given the diversity of their experiences, caregivers generally stated that their relationships with care recipients had improved over time and said that they found caregiving to be rewarding. Showcasing the positive experiences and challenges they face, caregivers concluded by pointing to opportunities for organizations to improve outreach and provision of services to them—our nation's hidden heroes.

Recommendations

A full set of recommendations for better supporting military and veteran caregivers is provided in America's Military and Veteran Caregivers: Hidden Heroes Emerging from the Shadows (Ramchand et al., 2024). We do not make new recommendations in this study; rather, the perspectives of the interviewed caregivers provide additional context for five of the recommendations presented in Emerging from the Shadows:

• Promote work environments that are supportive of caregivers. Caregivers emphasized the importance of supportive work environments, specifically mentioning telework and the ability to have flexible schedules. Others described engaging in micro-entrepreneurial enterprises to supplement their incomes.
• Increase opportunities for caregivers to access available financial support, and offer additional financial compensation to caregivers for the work they perform. Caregivers not in the workforce described challenges navigating changing financial circumstances and services that might not be available to them because of income-level ineligibility. There are opportunities to provide these caregivers with additional guidance to inform financial and other planning efforts.
• Encourage health care systems to better integrate caregivers into health care teams. Caregivers appreciated being included by the health care providers caring for care recipients. However, some caregivers said that they primarily felt respected and understood because of their own background in health care and knowledge of medical terms or health systems.
• Focus programmatic and social support within the context of local conditions in which military/veteran caregivers live. Caregivers noted transportation and other access barriers that increase the time they need to spend caregiving or that increase challenges related to caregiving, demonstrating that virtual resources may be beneficial.
• Tailor caregiver support programs to reflect caregivers' diverse preferences and needs. Caregivers often relied on informal support systems and provided suggestions about how formal programs could attract more caregivers. These suggestions included increasing the visibility of diverse and representative caregivers and their stories, creating partnerships with organizations that are likely already serving caregivers (e.g., those serving older adults or religious organizations), and fostering improved access to case managers.