TBI Awareness and Health Literacy Gaps among Hispanics with TBI in the US

Monique R. Pappadis, MEd, PhD • Angelle M. Sander, PhD

Hispanics are the largest ethnic minority group in the United States1 and are represented in large numbers among people with traumatic brain injury (TBI).2,3 Unfortunately, Hispanics report worse outcomes compared to non-Hispanic Whites in the areas of neurobehavioral functioning,4 functional independence,5,6 and community integration or participation, including employment.6,7 They are more likely to be uninsured and have less access to rehabilitation treatments that could improve outcomes.8-10 These challenges in accessing health care and achieving maximal outcomes after TBI may be exacerbated for those whose primary language is Spanish. A 2013 Pew research poll showed that 35.8 million Hispanics in the United States speak Spanish at home.11 The number of Hispanics who speak English proficiently is rising due to the high number born in the U.S., but only 34% of foreign-born Hispanics speak English proficiently.11 A study investigating outcomes following TBI in Hispanics whose primary language was Spanish found 63% of participants were unemployed at one year after injury, and 48% remained unemployed at 10 years post-injury.12 Similarly, 41.5% required the assistance of another person for daily activities at 1 year post-injury, and 43.5% required assistance at 10 years.12 A recent study conducted with the TBI Model Systems national database showed a small significant difference in favor of greater outcomes for English-speaking versus Spanish-speaking Hispanics in overall community participation scores at one year post-injury, particularly for social relations.13 Lequerica and colleagues showed that the number of foreign language speakers living in the neighborhood of a person with TBI can impact outcomes, with better work and school outcomes when Spanish speakers born outside of the United States lived in neighborhoods with other foreign language speakers.14

Thus, research suggests that Hispanics whose primary language is Spanish may face greater challenges following TBI, based on a combination of insurance access, healthcare access, and environmental characteristics. In a recent qualitative study by Pappadis, Sander and colleagues, Spanish-speaking immigrants with TBI living in the US shared their lived experiences and reported significant barriers to their quality of life after injury, including difficulty accessing needed health services, long-lasting symptoms, loss of self, decreased ability to engage in meaningful activities, and significant financial or employment changes.15 Despite these challenges, they maintained faith, were resilient and hopeful about their recovery, shared empathy for others, and perceived support from friends and family. Being undocumented in the U.S. hinders ability to receive needed rehabilitation services.16 Individuals who are primarily Spanish speaking may not receive adequate education on TBI, the consequences of injury, and importance of rehabilitation. In a study exploring common TBI misconceptions, Spanish-speaking Hispanics/Latinos reported greater misconceptions than Englishspeaking Hispanics/Latinos or Blacks, even after controlling for education and religious adherence.17 The majority of Hispanics/ Latinos with TBI lacked knowledge on the goal of rehabilitation, impact of TBI on self-awareness, and the recovery process. Physical and emotional changes were well understood; however, greater misconceptions were associated with cognition and behavioral changes. Results highlight the importance of providing Spanish language materials to Spanish-speaking Hispanics/Latinos with TBI. In addition, educational strategies should consider cultural beliefs, education, health literacy and facilitating realistic expectations during the recovery process.

Pappadis, Sander and colleagues developed and evaluated an educational intervention to reduce TBI-related misconceptions among Blacks and Latinos with TBI.18 A single session educational intervention was developed in English and Spanish and provided by a bilingual, bicultural health educator in the homes of persons with TBI who were at least six months post-injury. The materials were assessed for cultural relevancy by accounting for reading level, use of common language and cultural terms, and consideration of cultural customs by Blacks and Hispanics/Latinos. Materials were reviewed by native Spanish speakers from a variety of nationalities (e.g., Cuba, Puerto Rico, Mexico and El Salvador), and back-translated by two bilingual researchers. Baseline misconceptions were greatest among the Spanish-speaking Hispanics/Latinos compared to Englishspeaking Blacks and Hispanics/Latinos.

However, following receipt of the educational intervention, Spanish speakers showed the greatest reduction in misconceptions. Providing a brief educational session showed promise, but more work is needed on developing culturally relevant interventions that will allow Spanish-speaking persons with TBI to maintain knowledge gained. In addition, the role of misconceptions in management of symptoms and health for Spanish speakers with TBI remains unclear.

Health literacy must be considered when attempting to increase services and improve outcomes following TBI, and may be particularly relevant for Spanish-speaking Hispanics who are often educated outside of the United States, with differing experiences with Westernized medicine. Health literacy may contribute to the misconceptions about TBI described in the Pappadis et al. study.17 Health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”.19 Low health literacy is associated with a variety of poor health behaviors in general medical populations and among the elderly.20,21 Examples are poorer medication management and decreased use of preventive health services such as mammography. Older adults with inadequate health literacy have been found more likely to have hypertension, diabetes mellitus, arthritis, and heart failure.22 While health literacy has not been investigated in people with TBI, a study with a mixed rehabilitation sample (stroke, hip fractures, and joint replacements) showed that low health literacy contributed to poor decision-making when choosing rehabilitation programs.23

TBI can result in cognitive impairments that may exacerbate preexisting low heath literacy or decrease previously good health literacy. Understanding the impact of TBI on health literacy is important for Spanish-speaking Hispanics living in the United States. A national study on health literacy, conducted in 2003, showed that Hispanics had poorer health literacy compared to any other ethnic group.24 To improve understanding of health literacy in people with TBI, Drs. Sander and Pappadis are leading a 5-site collaborative TBI Model System study, funded by the National Institute on Disability, Independent Living, and Rehabilitation Research. The aims of this study are to: (1) characterize health literacy in a representative sample of people with TBI, including Spanish-speaking Hispanics; (2) determine the relationship of heath literacy to injury severity and cognitive impairment; and (3) determine the contribution of health literacy to physical and mental health outcomes. The health literacy survey is being administered in validated Spanish language versions in order to include Spanish speakers. We hope to be able to investigate unique characteristics of health literacy in Spanish-speaking Hispanics with TBI, as well as unique aspects of the relationship of health literacy to outcomes. Findings can guide interventions to improve health literacy and to help healthcare providers tailor information to enhance healthcare utilization and access by Spanish speakers. It is important to realize that low health literacy may be related to unfamiliarity with Westernized medicine and its methods. Spanish speakers may have greater health literacy in their native countries, where providers may share similar health beliefs and administer healthcare differently. These cultural differences must be considered when discussing health literacy for Spanish speakers.

In summary, brain injury professionals should aim to provide culturally relevant materials in an understandable language when interacting with Spanish-speaking persons with TBI who may have TBI-related misconceptions. To improve health literacy of this population, information should be readily accessible and provided in a manner that can be used to help them manage their health and improve patient-provider communication when discussing health after injury. Furthermore, Spanish-speaking caregivers should be involved in the process to identify and reduce their potential TBI-related misconceptions so they are able to fully support their loved one with TBI. Partnering with community-based organizations serving Spanish-speaking individuals may raise awareness about TBI and connect them to needed resources. Future research should examine healthcare needs and develop interventions to reduce disparities and improve health outcomes of Spanish-speaking persons with TBI living in the US.

References

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Author Bios

Monique R. Pappadis, MEd, PhD, is an Assistant Professor of the Department of Nutrition, Metabolism, and Rehabilitation Sciences in the School of Health Professions at the University of Texas Medical Branch at Galveston (UTMB) and a Co-Investigator on the Texas TBI Model Systems at the Brain Injury Research Center of TIRR Memorial Hermann. Her research includes health literacy after brain injury, minority aging, health disparities, and continuity of care after brain injury. Dr. Pappadis has won several research awards, made numerous national/international presentations, published over 40 publications, two monographs in Spanish, one book chapter, and disseminated several educational materials for persons with brain injury and their caregivers. She is an active member of the American Congress of Rehabilitation Medicine (ACRM), where she serves as Chair of the Committee on Diversity, Equity, and Inclusion, and co-Chair of the Career Development Networking Group. She is also a member of the Academy of Certified Brain Injury Specialists’ (ACBIS) Board of Governors of BIAA and the Professional Advisory Board for Pink Concussions.

Angelle M. Sander, PhD, is Professor in the H. Ben Taub Department of Physical Medicine and Rehabilitation at Baylor College of Medicine and Director of TIRR Memorial Hermann’s Brain Injury Research Center. She is Project Co-Director for the Texas Traumatic Brain Injury Model Systems at TIRR. She has been PI or CoInvestigator on federally funded studies addressing prediction and treatment of cognitive, emotional, and psychosocial problems in persons with TBI, intimacy and sexuality after TBI, impact of TBI on caregivers, and cultural disparities in outcomes following TBI. She co-chairs the TBI Model System Special Interest Group on Inclusion, Diversity, Equity, and Accessibility. She has over 120 peer-reviewed publications, numerous book chapters and published abstracts, and multiple consumer-oriented dissemination products, including fact sheets, educational manuals, webcasts, and videos. Dr. Sander also serves as neuropsychologist for the inpatient rehabilitation unit at CHI Baylor St. Luke’s Medical Center.

NEUROREHABILITATION & RESEARCH HOSPITAL

Madison Schwartz, Stanford Law, Randall H. Scarlett, Randall A. Scarlett, Ronnie Pang, Olga Rios, Mary Anne Scarlett, and Brendan D. Nay.

SCARLETT LAW GROUP

Scarlett Law Group is a premier California personal injury law firm that in two decades has become one of the state’s go-to practices for large-scale personal injury and wrongful death cases, particularly those involving traumatic brain injuries.

With his experienced team of attorneys and support staff, founder Randall Scarlett has built a highly selective plaintiffs’ firm that is dedicated to improving the quality of life of its injured clients. “I live to assist people who have sustained traumatic brain injury or other catastrophic harms,” Scarlett says. “There is simply no greater calling than being able to work in a field where you can help people obtain the treatment they so desperately need.”

To that end, Scarlett and his firm strive to achieve maximum recovery for their clients, while also providing them with the best medical experts available. “As a firm, we ensure that our clients receive both the litigation support they need and the cutting-edge medical treatments that can help them regain independence,” Scarlett notes.

Scarlett’s record-setting verdicts for clients with traumatic brain injuries include $10.6 million for a 31-year-old man, $49 million for a 23-year-old man, $26 million for a 7-year-old, and $22.8 million for a 52-year-old woman. In addition, his firm regularly obtains eight-figure verdicts for clients who have endured spinal cord injuries, automobile accidents, big rig trucking accidents, birth injuries, and wrongful death.

Most recently, Scarlett secured an $18.6 million consolidated case jury verdict in February 2014 on behalf of the family of a woman who died as a result of the negligence of a trucking company and the dangerous condition of a roadway in Monterey, Calif. The jury awarded $9.4 million to Scarlett’s clients, which ranks as one of the highest wrongful death verdicts rendered in recent years in the Monterey County Superior Court.

“Having successfully tried and resolved cases for decades, we’re prepared and willing to take cases to trial when offers of settlement are inadequate, and I think that’s ultimately what sets us apart from many other personal injury law firms,” observes Scarlett, who is a Diplomate of the American Board of Professional Liability Attorneys.

In 2015, Mr. Scarlett obtained a $13 million jury verdict for the family of a one year old baby who suffered permanent injuries when a North Carolina Hospital failed to diagnose and properly treat bacterial meningitis that left the child with severe neurological damage. Then, just a month later, Scarlett secured an $11 million settlement for a 28-year-old Iraq War veteran who was struck by a vehicle in a crosswalk, rendering her brain damaged.