Background Up to 23% of Veterans serving in the post-9/11 service era may have experienced a traumatic brain injury (TBI). Epidemiological studies have documented lasting effects of TBI among Veterans of Operations Enduring Freedom (OEF), Iraqi Freedom (OIF), and New Dawn (OND), including high rates of comorbid psychiatric disorders. Little is known about the lived-experiences of Veterans with TBI- including impact on family and other social relationships, community interactions, treatment preferences and goals of recovery, sources of support, access to care and barriers to engagement in care, and challenges to reintegration. Given the cognitive and emotional challenges faced by many Veterans with TBI and the demands and strains on family and friends who support them (hereafter referred to as care partners), patientand community-oriented research that explores these lived experiences and what they reveal about gaps in systems of care is essential for developing effective strategies to ameliorate those gaps. Objectives Community-based participatory research (CBPR) photovoice methods will be used to engage OEF/OIF/OND Veterans with TBI and their care partners in developing photo-narratives that illuminate and convey experiences of community reintegration after TBI, including goals for recovery, sources of support, treatment preferences, and unmet needs. These photo-narratives will be used as the basis for engaging key stakeholders-Veterans and care partners, community-based organizations (CBOs) serving Veterans, VA and non-VA clinicians, program managers, researchers, and policymakers-to identify target areas and strategies to improve access to and engagement in care for Veterans and care partners, strengthen relationships (between VA, Veterans, care partners, and CBOs), and enhance community reintegration for Veterans. A blueprint for CBPR/Partnered research at VA will be developed, including identification of best practices for developing and sustaining collaborations, engaging Veterans and care partners in interpretation and dissemination of findings, exploring impact of participation on stakeholders, and harnessing the strength of visual- and narrative-based findings to meet the strategic goals of VA and community partners. Methods Forty-five OEF/OIF/OND Veterans with TBI and 45 care partners (total N=90) will create and share photo-narratives that communicate their experiences and perspectives regarding community reintegration needs, challenges, and resources. This two-site study will include Veterans who primarily utilize VA care, as well as those who are non-VA users or dual-care users. Methods will be primarily qualitative, including individual photo-elicitation interviews with Veterans and care partners, follow-up dyadic interviews with Veteran-care partner pairs, and small group discussions. In keeping with a CBPR model, interpretation and dissemination of findings will engage key stakeholders as partners through activities emphasizing advocacy, community-building, and education. Findings from a mixed methods process and impact evaluation will be used to inform VA's efforts to incorporate CBPR/person-centered approaches into health services research and quality improvement efforts. Anticipated Impact on Veteran's Healthcare Data generated through photovoice methods, in the form of powerful photo-narratives, will enable Veterans and care partners to actively participate in describing and characterizing the impact of TBI on family and community relationships, goals for recovery, treatment preferences, and challenges to accessing and engaging in care. Partnered research involving Veterans, their care partners, and VA and community stakeholders, will result in alignment of goals, strategies, and resources to improve systems of care and sources of support for Veterans with TBI. A long-term goal is to build VA's capacity to undertake community-engaged research to inform implementation of patient-centered care practices, policies, and programs aimed at improving the lives of Veterans and their families.
Little is known about the lived-experiences of OEF/OIF/OND Veterans with traumatic brain injury (TBI), nor about the perspectives and experiences of the family and friends (care partners) who provide support and assistance with post-deployment reintegration. Understanding the impact of TBI on family relationships, community interactions, treatment preferences, and goals of recovery is essential to providing high quality, patient-centered care and facilitating effective Veteran-care team communication and collaboration. Using a community-based participatory research approach, the proposed photovoice study will empower Veterans and care partners affected by TBI to communicate their challenges and strengths around post-deployment community reintegration to each other and to key VA and community stakeholders. This innovative project will inform system of care improvements, including efforts to improve access to and utilization of community reintegration services by OEF/OIF/OND Veterans with TBI and their care partners.
