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 co-morbid 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"), patient-and 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.
We are using community-based participatory research (CBPR) photovoice methods 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 strategies and interventions 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 VA's strategic goals at the local and national levels.
Forty-five OEF/OIF/OND Veterans with TBI and up to 45 care partners will create and share photo-narratives that communicate their experiences and perspectives regarding community reintegration needs, challenges, and resources. This two-site study includes Veterans who primarily utilize VA care, as well as those who are non-VA users or dual-care users. Methods are 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.
Preliminary analysis of Veteran and Care Partner photonarratives reveals three main themes: Theme 1. Barriers to TBI care and unmet needs-- Delays and challenges to getting TBI diagnosis; Loss of Active Duty resources and support
Treatment focused on PTSD; little available for TBI; Overmedicated/lack of non-medication options ; Care partners feel invisible; most services focused on Veteran; Theme 2. TBI-related changes in roles and relationships-- 'Invisible' nature of TBI makes it difficult for others to understand Veteran's symptoms and limitations; Veterans and care partners experience loss or changes in employment that can negatively impact identity; Concerns about Veteran's ability to cope with social situations can lead to social isolation for both; Some Veterans struggle to communicate even with care partner and other close family members, exacerbating feelings of alienation and loss; and Theme 3. Strategies and sources of support --VA Transition Care Management and Caregiver Support Program
Non-VA providers and services; Complementary and integrative health services- mostly non-VA; Self-care through outdoor activities & creative arts; Finding meaning and purpose through helping others, seeking employment to serve other Veterans; Pets as emotional support, service animals.
Implications: Photo-narratives generated in collaboration with Veterans and care partners provide powerful insights into a range of experiences of living with TBI and seeking treatment. Veterans' and care partners' narratives can be used to educate health care providers, administrators, policymakers, and community stakeholders to inform best practices for person-centered care andsuggest new interventions for Veterans and their families. This work demonstrates the utility of community-engaged research approaches to improving TBI related clinical care and services through insights from Veterans and care partners.
Data generated through photovoice methods, in the form of powerful photo-narratives are enabling 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.
- Wyse JJ, Ono SS, Kabat M, True G. Supporting family caregivers of Veterans: Participant perceptions of a federally-mandated caregiver support program. Healthcare (Amsterdam, Netherlands). 2020 Sep 1; 8(3):doi.org/10.1016/j.hjdsi.2020.100441.
- True G, Davidson L, Facundo R, Meyer DV, Urbina S, Ono SS. "Institutions Don't Hug People": A Roadmap for Building Trust, Connectedness, and Shared Purpose through Photovoice Collaboration. Journal of Humanistic Psychology. 2019 Jun 19; https://doi.org/10.1177/0022167819853344.
- Ono SS, Carlson KF, Cottrell EK, O ME, Lovejoy TI. Establishing a veterans engagement group to empower patients and inform Veterans Affairs (VA) health services research from the Proceedings of the 3rd Biennial Conference of the Society for Implementation Research Collaboration (SIRC) 2015. [Abstract]. Implementation Science. 2016 Nov 1; 11(Suppl 1):85.