Creating Research Partnerships With People With Traumatic Brain Injury From Underserved and Made-Marginalized Communities: The Need for Accommodations and Trauma-and Violence-Informed Dialogue

Background Involving persons with lived experience (PLEx) as research partners is increasingly recognized as valuable in health and social sciences, particularly where behavioral and social determinants intersect with health. Unique considerations arise when partnering with PLEx from underserved, marginalized, and trauma-affected communities. Traumatic brain injury (TBI) co-occurs with other health and social inequities; populations experiencing trauma, poverty, and systemic violence carry greater TBI burden and poorer outcomes, yet are underrepresented as research participants and especially as research partners. Meaningful inclusion of these communities is needed to center their voices in research questions and design, however researchers require guidance on the intersectional impacts of TBI, trauma, poverty, and mental health, and on how to operationalize equitable partnerships that accommodate these realities. Objective To identify barriers and facilitators to engaging individuals with TBI from underserved and marginalized communities as research partners, and to generate concrete recommendations to mitigate barriers and promote accessible, trauma-informed partnerships. Methods We conducted a partnered qualitative study. Demographic information was collected from consented participants with histories of TBI, trauma, and marginalization. Two virtual focus groups were held using questions co-developed with a research partner with lived experience. Focus group topics included the perceived need for research partnerships with PLEx of brain injury and marginalization; required accommodations and accessibility measures; and preferred practices for addressing power imbalances and fostering safety and genuine partnerships. Sessions were recorded, transcribed, and analyzed using thematic analysis to identify patterns, themes, and subthemes. From identified themes, we developed specific recommendations for researchers. Results Ten individuals consented; five attended focus groups despite repeated reminders, with non-attendance attributed to memory, organizational challenges, and unstable life circumstances—illustrating practical barriers to engagement. Analysis yielded three principal themes: (1) Need for Trauma- and Violence-Informed Dialogue — emphasizing recognition of trauma histories, sensitive communication, and practices that avoid re-traumatization; (2) Research Collaboration and Partnerships — underscoring the importance of shared decision-making, power redistribution, meaningful roles, compensatory practices, and sustained relationship-building; and (3) Need for Accommodations and Accessibility — detailing flexible scheduling, multiple communication modalities, memory and cognitive supports, and practical assistance (e.g., transportation, technology). From these themes, we derived eleven actionable recommendations for researchers to consider when designing and implementing partnerships with PLEx of brain injury and trauma. Conclusions Partnering with PLEx represents a paradigm shift capable of informing systemic change in healthcare and research. Engaging PLEx of brain injury from underserved and marginalized communities can deepen understanding of their complex needs and support more equitable access to care and rehabilitation. Implementing trauma- and violence-informed approaches alongside concrete accommodations can enable accessible, meaningful, and ethical research partnerships.