Conversation With Community: Traumatic Brain Injury Summary Report

Participants mentioned the difficulty in navigating everyday life due to symptoms of TBIs such as memory loss, difficulty concentrating, and emotional dysregulation. The personality shift that may come with TBI can also negatively impact their relationships and interactions with others. One participant stated that her friend with a TBI changed drastically and often said, “I can’t find joy anymore.” There was also an emphasis on the difficulty in relating to others in a way that felt truly connected and comfortable. One participant whose child has a TBI discussed how the lack of socialization contributed to poor mental health, and stated, “When we get past the clinical stuff, people want to feel normal and have a normal life…Because it is invisible, people don’t believe it exists.” Difficulty in communication is often a barrier to connection and feeling heard. A participant and survivor of DV, shared, “I may struggle to find the right words, follow conversations, or keep up with fast-changing topics…I feel embarrassed.”

Because traumatic brain injuries are usually unseen, the stress of having to account for the symptoms that do appear, such as memory loss, fatigue, and dizziness, is an added pressure to those who suffer from it. Internalized shame from an invisible disability like TBI contributes to feelings of isolation. One participant stated, “Emotionally, I feel disconnected, sometimes like I'm watching life from behind a glass.” Another participant described their child as feeling isolated due to their restriction from driving and lack of dating experience. The feeling of shame is compounded by the fear of sharing with their communities, thus contributing to isolation. One participant commented on the judgment passed by family and community, saying, “There’s the fear of the label, and so you don’t accept the label.” Reasons for isolation vary from inability to physically be in the community to feeling emotionally overwhelmed in crowds. The consensus among participants is that a sense of disconnection from others was detrimental to individuals' overall well-being and healing.

Participants who are either advocates or caregivers commented on the significant time and effort invested in assisting individuals with TBIs with daily tasks, such as helping them be organized with bills, reminding them to take medication, and writing down verbatim information to relay to medical professionals. An advocate-participant mentioned discovering their client had a TBI and needed help paying bills, not due to a lack of finances, but because of the overwhelming nature of such tasks. Participants noted that this reliance on others creates a sense of embarrassment and frustration for individuals with traumatic brain injury, which can either lead to the desire to hide their TBI diagnosis or refuse to acknowledge the presence of a TBI.

Participants noted the stigma that accompanies a TBI, with many experiencing being judged or dismissed by medical professionals, strangers, family members, and law enforcement. A comment often shared by the group was that being AI/AN was seen as a marker for certain stereotypes that overpowered the reality of a situation, summed up in the statement, “People are more reluctant to believe Natives.” Misconceptions that AI/AN individuals are “drunks” and undeserving of patient understanding or resources were commonly heard by participants. As one participant stated, “If you see someone staggering, the assumption is that you’re a drunk Native, but the person could be suffering from severe head trauma.”

Participants also noted that a similar stigma and judgment were extended to individuals experiencing homelessness, victims of DV, and those deemed to have erratic behaviors, which becomes a barrier to healing and treatment. People who experience homelessness are two to four times more likely to have a history of any type of TBI than the general population, and 90 percent of homeless women have experienced severe physical or sexual violence at some point in their lives. As several participants noted, AI/AN individuals experiencing homelessness are often considered too untrustworthy to be believed, and are brushed off as either alcoholics, violent, or unfriendly.

Victim-survivors of DV who have TBIs state that the shame felt for having a TBI is like the shame felt from physical and emotional abuse. One participant, a survivor of DV, detailed the experience of trying to be believed, “no one had really connected my symptoms to the abuse, even though I’d been hit in the head multiple times. It was hard not to feel believed or taken seriously.” This internalized shame stemming from judgment and a lack of understanding can contribute to an aversion to seeking help. To protect themselves from such stigma(s), many individuals go without a diagnosis for years, which can contribute to risks of misdiagnosis and, therefore, not obtaining the appropriate treatment for their TBI.

Participants explained that co-occurring disabilities, changes in health, limited access to healthcare, and experiencing DV can also interrupt treatment for TBI or reduce the likelihood of receiving an accurate diagnosis.

One participant, who is experiencing menopause and a TBI, reported receiving very little guidance on managing the symptoms of both medical conditions when they occurred at the same time. She shared that the lack of open discussion placed the burden on her to find appropriate care. She noted that advocating for treatment has been difficult because several symptoms—such as memory loss—can be associated with either TBI or menopause, making it challenging to get healthcare providers to fully address both concerns.

Other survivors of DV also described how dissociation during traumatic events can make it difficult to recognize that a TBI has occurred. Many reported uncertainty about when to seek specialized medical assistance due to fear of the abuse being discovered and concerns about whether they would be believed. As one participant stated, “You are just trying to survive the relationship, not registering all the things that happened.” A lack of general knowledge of TBIs in the context of domestic violence, as well as a limited knowledge about how to ask for help, were common themes across participants’ comments.

According to participants, long-term care plans were rarely provided even after receiving medical attention. One DV survivor stated, “I went through cognitive therapy for a short while, and I was given exercises to help with memory and concentration…But accessing ongoing care has been difficult. It’s been frustrating trying to get the kind of long-term care that I know is needed.”

Supportive programs do exist. However, they are typically designed to address a single area of need—such as DV services, TBI-specific programs, or emergency trauma care—with limited coordination or integration across these systems. One participant stated, “In my community, there are very few resources that are specifically for survivors of DV and TBI. There’s a brain injury association that holds monthly meetings, but it’s not [Native specific], and I don’t always feel understood or safe sharing my experiences there. On the other hand, the DV services are focused on safety and advocacy, but don’t know how to help with brain injury symptoms. There’s this gap between the two systems, and I often feel like I fall into it.” Structured systems that include concise communication and plans of care between specialists, community outreach providers, and the law enforcement and judicial systems are lacking.

Due to the limited response and education on traumatic brain injuries, rather than receiving holistic and coordinated care, caregivers and individuals find themselves navigating systems on their own. This often means creating their own support groups and communities to share information.

Advocates who were interviewed cited various ways to navigate medical systems, including obtaining a diagnosis. One participant stated, “We practice keywords and a timeline…It may be helpful to write out symptoms on paper, so you don’t have to remember everything, or to hand the note to the doctor if it is hard to talk.” Another advocate-participant described specific resources to help individuals seeking medical assistance, stating that their organization pays for up to 10 visits to a therapist or psychiatrist. Strategies and programs like these highlight the importance of holistic care and coordination between all aspects of supporting a victim-survivor with a TBI. Even within the context of an interview about the lack of clear pathways to support, advocates spent a considerable amount of time sharing resources and specific information after one participant expressed that the only way she knew how to ask a medical person for help was to say “Can you check my brain?” Clarifying the strategies to navigate systems is a challenge for Indian Country, due to under-resourced health services and limited Native-specific programs that are better suited to address the unique needs of Tribal communities. This part of the conversation highlighted the importance of the shared community experience and knowledge that many people rely on. And yet, as another participant responded, “As advocates, sometimes we don’t know,” capturing the reality of limited education on TBI and support for providers.

A common theme across experiences shared was the significant difficulty in obtaining diagnosis, treatment, resources, and ongoing care for TBIs. Participants described challenges such as dismissive interactions with medical providers, limited data on TBI, underfunded service systems, a lack of Tribal-specific programs, and fear or mistrust of law enforcement, medical systems, and, to some extent, advocates. These barriers place additional burdens on Native victim-survivors who are living with TBIs.

Barriers to treatment are often more pronounced in Indian Country. For many, living in rural communities makes it difficult to travel to medical specialists or receive consistent care. The history of a Native individual’s past also contributed to the fear some people felt when seeking assistance. One advocate-participant described a client who refused to seek access to services because of earlier traumatic experiences with law enforcement as a Native man: “Since he was a child, he was one of the '60s swoop babies and has a brain injury when he was young. He also suffered an injury after being sprayed by law enforcement. When he seeks medical attention, he gets institutionalized.”

Fear of interacting with medical and judicial systems leads many to avoid them altogether. For some, the potential negative consequences of disclosing symptoms and diagnoses outweigh the benefits of receiving appropriate care. Several participants noted that disclosure could put employment and parental rights at risk and may lead to retraumatization. Some participants shared that their loved ones lost their jobs or resigned immediately after disclosing having post-traumatic stress disorder and a traumatic brain injury. Another participant described how their child had multiple negative encounters with law enforcement before receiving a diagnosis and was told they would go to jail once they turned 18.

Because of the persistent risk of legal consequences and punitive responses, individuals with a TBI may choose not to disclose their condition as a way to maintain safety and autonomy.

When people discuss their TBI symptoms with doctors or nurse practitioners, communication often breaks down. Participants shared experiences of being ignored or dismissed when seeking support for TBIs, leaving many feeling unheard and alone. One shared, “We’ve had a neurologist miss it at first. It's like (my child) is invisible.” Another participant explained their experience in getting diagnosed, “Every time I brought it up to a doctor, they focused more on anxiety or depression, which are also real, but didn’t explain everything. It wasn’t until I saw a neurologist, after months of pushing for a referral, that they diagnosed me with a mild TBI.”

Even when TBI was diagnosed, follow-up plans for treatment or aftercare were often inadequate. One participant recalled being prescribed pain medication for an injury without any plan for ongoing care or integrated therapies. Another described urging a friend to disclose her injury to a doctor, only to have the doctor nonchalantly confirm that she did, in fact, have a TBI—without providing a referral or any next steps. These gaps in follow-up care and wrap-around services highlight the need for a more holistic approach that includes intentional, multilevel coordination among appropriate medical providers, advocates, and the judicial system. As one participant said, “I’d love to see a community clinic or center where I could get help for my brain injury, trauma, and mental health all in one place, especially one that understands Native experiences.”

Advocates who were interviewed for this study also highlighted significant challenges within their roles, including limited data, insufficient training, and inadequate funding. One advocate described creating additional intake questions to better identify potential TBIs in clients, explaining, “TBI in Indian Country goes underreported in men, women, and children. Even when I frame questions in intake, I ask questions that help them check for TBI.”

Advocates identified minimal financial resources dedicated to TBI services as another challenge. As one advocate stated, “Funding is limited… and carving out a fund for TBI is difficult.” Despite these constraints, many advocates expressed a sense of guilt for not being able to do more. One reflected, “We are not digging deep enough into what is happening with people. After years of working in DV, I found that too often, including myself at one point, I assumed. I know better now.”

The lack of professional support—training, education, funding, and materials—combined with the responsibility of assisting as many victim-survivors as possible, has been identified as a contributor to advocate burnout. High turnover disrupts continuity of services and can erode trusted relationships within Tribal communities. This is especially detrimental to Tribal communities because when knowledge, experience, and trust of a Tribal community are established, losing those advocates also means a loss of trusted connection for many victim-survivors.

Several participants were the primary caregiver for a loved one with a TBI. According to the Administration for Community Living, nearly half of caregivers are family members over the age of 50 and are at risk of damaging their own physical and emotional health. Other feasible options to provide care for individuals with TBIs may not be readily available. One participant’s spouse resigned from their job to offer necessary long-term care for their child with TBI. Another participant, a survivor of DV and strangulation, spoke of challenges with accomplishing daily routines and tasks with their spouse, who also has a TBI.

Alternatively, some families and friends did not accept the health issues of TBI. Several participants relayed observations of family members refusing to acknowledge the presence of a TBI. One participant described what happened after a friend was diagnosed with a TBI due to a fall. “Everything that she found joy in is no longer there…sounds and overstimulation overwhelm her. But her husband and family say nothing is wrong.” Participants generally agreed that reluctance to receive or acknowledge a diagnosis often stems from fear about what may follow next and from discomfort discussing complex or sensitive issues.

The stigma and judgment pertaining to DV are contributors to the cycle of violence in Indian Country and symptoms of collective trauma. The viewpoint that DV is either an individual’s responsibility to address or a family crisis continues to persist. One participant stated, "There is a mentality we need to fix things within our families and not bring outsiders into it. This confined mentality does not fit the modern narrative because there are resources.” Another participant stated, “In my family, you definitely don’t talk about family issues.” Through education and awareness, communities can challenge the norm that places responsibility for DV and its effects on survivors, therefore breaking the silence that has long surrounded it.

Many participants interviewed were family members or caregivers to individuals with TBIs. Ensuring that caregivers have access to resources, support, and community-based options was a priority concern. Creating dedicated spaces where caregivers can share information and support one another can help integrate individuals into larger social circles. Support groups focus not only on coping but also on helping survivors thrive and feel connected are essential. These discussions were not only reflective but also solution-oriented storytelling.

Implementing trauma-informed and Native-specific education and training can help establish a more holistic framework of protection and support for survivors of DV with TBI. Coordinating multilevel systems of care - including law enforcement, the judicial system, medical providers, and advocates- is a critical need. Community-led strategies should be included when planning and implementing these initiatives to strengthen health outcomes and promote consistent, long-term responses. Awareness of the historical and ongoing experiences of Tribal communities is also necessary, particularly given the common fear and mistrust of medical and legal systems.

Limited data on traumatic brain injury in Tribal communities places a strain on service providers, who must navigate complex systems with minimal support. It also limits broader recognition of the need for TBI-related resources. Funding is needed for accurate data collection and for developing appropriate resources so Tribal communities can access adequate, Tribal-specific support.

Education, training, and funding are essential for advocates to provide effective assistance to survivors. High rates of provider burnout and turnover—and their impacts on service continuity—must be addressed. Advocates need training on identifying the possible presence of TBI even when no diagnosis is disclosed, as well as understanding the connections between TBI, homelessness, and DV. Additional training on navigating the diagnostic process, accessing long-term care, and strengthening coordination with law enforcement and medical providers is also necessary.