The Department of Veterans Affairs (VA) has recently increased support for inclusion of Veterans and family caregivers as collaborators on the research that affects them. In this article, the authors—two VA investigators, two Veterans, and two caregivers—draw from nearly a decade of participatory action research to highlight the methods we have employed to build and sustain collaboration. These methods include the following: using ethnographic approaches to engender trust, treating informed consent as an ongoing process, and sustaining engagement through shared dissemination of findings. We also consider impacts of engaged research that lie outside the parameters of what traditionally “count” as outcomes and that have helped us maintain our collaborative relationships even during periods between funding. We provide examples of how community engagement has bridged Veteran communities and VA, and how the use of visual and narrative methods of dissemination has led to social connectedness and repurposing of Veterans’ and caregivers’ mission as advocates. Our goal is to inform those who wish to conduct this type of research, to further pull research efforts in this direction, and to demonstrate the value of collaborative research from the point of view of those who have been engaged in it.

Objective: Describe the different forms of emotion work performed by family caregivers of veterans living with a traumatic brain injury (TBI). Design: Collaborators were provided cameras to take photographs illustrating their experiences as family caregivers. The meaning behind caregiver photographs was solicited using photoelicitation interviews and coded. Setting: Homes of veterans or other informal settings in 2 regions of the United States served by the Southeast Louisiana Veterans Health Care System and the Veterans Affairs Portland Health Care System. Participants: Twenty-six family caregivers of post-9/11 era veterans with TBI. Results: Caregivers described performing different types of intangible, and largely invisible, work centered on emotion management. Emotion work primarily involved creating a new normal, keeping things calm, and suppressing their own emotional experiences to “put on a brave face.” Although having derived a sense of satisfaction and identity from their role, caregivers acknowledged that emotion work was challenging and sometimes stressful. The Photovoice method allowed caregivers to express through metaphor experiences that otherwise would have been hard to articulate and share with others. Conclusion: Findings signal a need for healthcare systems and providers to acknowledge emotion work as a potential source of stress and to provide multifaceted support for veterans and family caregivers.

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Hundreds of thousands of U.S. veterans and their families are significantly affected by traumatic brain injury (TBI), yet policy-makers and the general public often lack knowledge about TBI and other “invisible injuries” related to military service. Veterans may face delayed TBI diagnoses and trouble accessing needed health care, and they and their families may face stigma and misperceptions about TBI that impede successful community reintegration. Researchers in the Department of Veterans Affairs (VA) partnered with 45 veterans with TBI and 26 of their family caregivers on a participatory action research (PAR) study that used photovoice methods to explore and convey experiences of community reintegration after TBI. Interview data and images taken by participants were used to communicate stories, reflections, and insights. This paper reports participants’ reflections about (a) how they became aware of TBI-related symptoms and the impact of TBI on their lives and relationships, (b) challenges they have encountered—including misconceptions and stigma—when disclosing TBI and other “invisible injuries” to others, and (c) strategies and resources they draw upon to counter these challenges. The authors conclude by sharing participant-identified recommendations for supporting community reintegration after military service–related TBI. This work demonstrates the power of PAR to engage veterans and family caregivers in generating knowledge to inform the programs, policies, and public discourse that affect their lives. A priority for the dissemination of the study’s findings has been to raise awareness about TBI among veterans and military caregivers.