Brain Injury Professional: Brain Injury Among Spanish-Speaking Individuals by Brain Injury Professional

BRAIN INJURY professional vol. 18 issue 3

Brain Injury Among Spanish-Speaking Individuals

Highlight the quality services that you provide for people with acquired brain injury. You have quality practices in place to ensure optimal outcomes. Accreditation is the next step in growing your organization by demonstrating your person-centred focus, and your commitment to continuous quality improvement. CARF is a leading independent, nonprofit accreditor of health and human services that accredits more than 1,200 brain injury programs in the United States, Europe, the Middle East, New Zealand, and Canada. Our accreditation covers the continuum of services offered to individuals with ABI in a variety of treatment settings. About CARF: • Accredits programs internationally • Reviews business and clinical practices • Guides person-centred, evidence-based practices • Establishes quality performance improvement systems • Hosts training and education on standards Benefits of CARF accreditation: • Service excellence • Business improvement • Funding access • Competitive differentiation • Risk management • Positive visibility • Accountability • Peer networking

Chris MacDonell

Snap the QR code or visit www.carf.org/ Programs/Medical for full program descriptions.

Managing Director, Medical Rehabilitation and International Aging Services

To learn more about CARF and how accreditation can help your organization. Call or email us today! (888) 281-6531

med@carf.org

www.carf.org

BRAIN INJURY professional

vol. 18 issue 3

departments

Editor in Chief Message

Guest Editor’s Message

features

8 12 16

An Overview of Traumatic Brain Injury Care in Latin America Melina Longoni Di Giusto, MD • Juan Carlos Arango Lasprilla, PhD

Denise Krch, PhD • Anthony H. Lequerica, PhD

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

EDITORIAL INQUIRIES Managing Editor Brain Injury Professional PO Box 131401, Houston, TX 77219-1401 Tel 713.526.6900 Email: mbell@hdipub.com Website: www.nabis.org

Acquired Brain Injury in Spain Laiene Olabarrieta Landa, PhD

Considerations in the Neuropsychological Assessment of Spanish-speaking Adults

Considerations in the Evaluation of Spanish-speaking Children After Brain Injury Paula Karina Pérez, PsyD, LMHC

24 28

BRAIN INJURY PROFESSIONAL PUBLISHER J. Charles Haynes, JD CO-EDITOR IN CHIEF Beth Slomine, PhD - USA CO-EDITOR IN CHIEF Nathan Zasler, MD - USA ASSOCIATE EDITOR Juan Arango-Lasprilla, PhD – Spain TECHNOLOGY EDITOR Stephen K. Trapp, PhD - USA EDITOR EMERITUS Debra Braunling-McMorrow, PhD - USA EDITOR EMERITUS Ronald C. Savage, EdD - USA DESIGN AND LAYOUT Kristin Odom ADVERTISING SALES Megan Bell-Johnston EDITORIAL ADVISORY BOARD Nada Andelic, MD - Norway Philippe Azouvi, MD, PhD - France Mark Bayley, MD - Canada Lucia Braga, PhD - Brazil Ross Bullock, MD, PhD - USA Fofi Constantinidou, PhD, CCC-SLP, CBIS - USA Gordana Devecerski, MD, PhD - Serbia Sung Ho Jang, MD - Republic of Korea Cindy Ivanhoe, MD - USA Inga Koerte, MD, PhD - USA Brad Kurowski, MD, MS - USA Jianan Li, MD, PhD - China Christine MacDonell, FACRM - USA Calixto Machado, MD, PhD - Cuba Barbara O’Connell, OTR, MBA - Ireland Lisandro Olmos, MD - Argentina Caroline Schnakers, PhD - USA Lynne Turner-Stokes, MD - England Olli Tenovuo, MD, PhD - Finland Asha Vas, PhD, OTR - USA Walter Videtta, MD – Argentina Thomas Watanabe, MD – USA Alan Weintraub, MD - USA Sabahat Wasti, MD - Abu Dhabi, UAE Gavin Williams, PhD, FACP - Australia Hal Wortzel, MD - USA Mariusz Ziejewski, PhD - USA

Giselle Leal, PsyD

NORTH AMERICAN BRAIN INJURY SOCIETY CHAIRMAN Mariusz Ziejewski, PhD VICE CHAIR Debra Braunling-McMorrow, PhD IMMEDIATE PAST CHAIR Ronald C. Savage, EdD TREASURER Bruce H. Stern, Esq. FAMILY LIAISON Skye MacQueen EXECUTIVE DIRECTOR/ADMINISTRATION Margaret J. Roberts EXECUTIVE DIRECTOR/OPERATIONS J. Charles Haynes, JD MARKETING MANAGER Megan Bell-Johnston GRAPHIC DESIGNER Kristin Odom

Cognitive Rehabilitation for Spanish-speakers with Brain Injury in the United States

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

ADVERTISING INQUIRIES Megan Bell-Johnston Brain Injury Professional HDI Publishers PO Box 131401, Houston, TX 77219-1401 Tel 713.526.6900 Email: mbell@internationalbrain.org NATIONAL OFFICE North American Brain Injury Society PO Box 1804, Alexandria, VA 22313 Tel 703.960.6500 / Fax 703.960.6603 Website: www.nabis.org ISSN 2375-5210

Brain Injury Professional is a membership benefit of the North American Brain Injury Society and the International Brain Injury Association

Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2020 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mbell@hdipub.com.

BRAIN INJURY professional 3

The International Paediatric Brain Injury Society and the North American Brain Injury Society

Joint Conference on

Abstract portal now open! Submissions due: April 11, 2022

Brain Injury New York New Yorker Hotel September 21-24

2022 Administrative assistance from:

For conference information: www.internationalbrain.org

from the

editor in chief

Over 300 million people in 44 countries speak Spanish as their native language. It is the second most common native language in the world. Traumatic Brain Injury (TBI) is one of the most common causes of death and disability in Spanish-speaking individuals worldwide. As the population of Spanish-speaking individuals is grows both inside and outside of the US, needs and challenges related to providing culturally appropriate services to these individuals are also increasing.

Editor Bio Juan Carlos Arango-Lasprilla, PhD, is currently a Research Professor at BioCruces Vizcaya Health Research Institute in Bilbao, Spain. He has been instrumental in securing grant funding as PI and co-PI. Dr. Arango has received many awards for his accomplishments in the area of neuropsychology including awards from the National Academic of Neuropsychology, the American Psychological Association, the International Brain Injury Association, the International Neuropsychological Society and The American Congress of Rehabilitation Medicine. He has published more than 350 articles and book chapters and edited 11 books. Dr. Arango has been a guest editor of 12 special issues in prominent rehabilitation journals. Dr. Arango has lectured at Grand Rounds at more than 100 different universities across the globe. He organized and chaired 4 international conferences on neuropsychology, cultural issues and Brain Injury Rehabilitation. Dr. Arango is a founding member of the Colombian Neuropsychological Society, and he founded the IberoAmerican Journal of Neuropsychology. His research focuses on understanding and addressing the cognitive, psychological, and emotional needs of individuals with brain injury and their families. He is particularly interested in underserved populations, such as Spanish speakers, and carries out research in the US, Europe, and Latin America. He was PI of a large, multi-center norming study in which more than 14,000 adults and children from over 15 Latin American countries participated. Thanks to his leadership, normative data by country is now available for the 12 most commonly used neuropsychological tests in each respective population.

I’m pleased to have Dr. Anthony Lequerica as guest editor of this issue of Brain Professional with its focus on acquired brain injury in Spanish-speaking individuals. Dr. Lequerica is a Senior Research Scientist at Kessler Foundation’s Center for TBI Research and a Research Associate Professor at Rutgers – New Jersey Medical School in the Department of Physical Medicine and Rehabilitation. He has extensive clinical and research experience working with Spanish-speaking individuals with TBI in the US and abroad. For this issue, Dr. Lequerica has put together a collection of articles from a number of talented clinicians and researchers from US, Latin America, and Spain to address this important challenge providing culturally appropriate services to Spanish-speaking individuals with TBI. The articles will expand on the challenges these individual face, describe characteristics of the system in care in Spain, elaborate on assessment considerations for adults and children and their families, detail the implementation of cognitive rehabilitation, and explain common misconceptions about brain injury among Hispanics in the US and other health literacy issues. The articles published in this special issue represent a small step in the right direction on a long road to improved care leading to a better life for Spanish-speaking individuals with TBI and their families. Each article represents a piece of the puzzle, snapshots of different points in the care spectrum. When taken together, the recommendations provided in this special issue can help to build a more complete awareness of the current situation – a completed puzzle. It is my hope that such awareness leads to concrete actions by researchers, clinicians, funding agencies, and policy-makers to drive us further along the road to improved care for Spanish-speaking individuals with TBI.

BRAIN INJURY professional 5

Raising the bar for inpatient and day

rehabilitation services

We offer: • An expansive Inpatient Rehabilitation Program – A spinal cord system of care, brain injury and pediatric specialty programs that have received CARF specialty recognition – A team of brain injury board-certified pediatric physiatrists – Comprehensive care for young patients from birth to age 21 – Therapy seven days a week – 28 private patient rooms • A Day Rehabilitation Program to assist patients during recovery • Technology-assisted therapy through our Center for Advanced Technology and Robotic Rehabilitation • A full-service hospital with emergency services

Learn more or make a referral: 404-785-2274 choa.org/rehab

Children’s Healthcare of Atlanta has: Three hospitals • 27 neighborhood locations • 1 million+ patient visits per year

Children’s Healthcare of Atlanta is Commission on Accreditation of Rehabilitation Facilities (CARF)-accredited for pediatric rehabilitation services.

from the

guest editor

In the year 2020, almost 489 million individuals worldwide spoke Spanish as their native language, making Spanish the second most spoken language by native speakers, second only to Chinese1. This number increases to 585 million, 7.5% of the world’s population, when also including Spanish-speakers who learned Spanish as a second language1. Considering all who speak Spanish including native speakers and secondary acquisition, Spanish is the 4th most spoken language in the world, following English, Mandarin Chinese, and Hindi2. In this special edition of the Brain Injury Professional, we have assembled a number of authors who write about various aspects of brain injury among Spanish-speaking individuals in Latin America, Spain, and in the United States. Drs. Longoni and Arango-Lasprilla present an overview of brain injury care in Latin America that highlights some of the challenges faced in receiving medical care as well as services in the subacute phase of recovery. They provide a list of aspirational goals to improve care in Latin American countries.

Editor Bio Anthony H. Lequerica, PhD, is a Senior Research Scientist at Kessler Foundation’s Center for TBI Research and a Research Associate Professor at Rutgers – New Jersey Medical School in the Department of Physical Medicine and Rehabilitation. As Director of the Brain and Behavioral Outcomes Lab, his research focuses on cultural and sociodemographic factors affecting brain injury rehabilitation outcomes. He is Co-Chair of the Inclusion, Diversity, Equity, and Accessibility Special Interest Group within the Traumatic Brain Injury Model Systems sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. He is a Staff Neuropsychologist at Kessler Institute for Rehabilitation where he provides neuropsychological services to Spanish-speakers with a variety of neurological conditions. He has over 50 peer-reviewed publications and has given numerous presentations across the U.S. and abroad to researchers, health care professionals, and individuals with brain injury and their families.

In Spain, the mother country for the origins of the Spanish language, Dr. Olabarrieta Landa provides statistics from a recent survey and highlights the system of care for acquired brain injury. She discusses variations across regions with attention to public and private systems of healthcare coverage, as well as services and resources that are provided through acquired brain injury organizations. In the United States, Hispanics are the largest ethnic minority group, accounting for over 18% of the population. According to the 2019 U.S. Census, 70.6% of Hispanics over the age of 5 in the United States speak Spanish in the home, almost a third of whom speak English less than "very well"5. This amounts to almost 15.7 million individuals for whom cultural and linguistic factors should be taken into account when providing a patient-centered approach to healthcare. Drs. Leal and Karina Pérez discuss assessment considerations in the neuropsychological evaluation of Spanish-speakers, one with a focus on adults, and the other covering important issues in working with children and their families. They highlight the importance of test selection and appropriate normative data. From the area of assessment, we move toward a focus on treatment with a discussion of cognitive rehabilitation for Spanish-speakers by Dr. Krch. Research is in its infancy for evidence-based interventions addressing cognitive deficits after brain injury for Spanish-speakers. Nevertheless, promising findings are beginning to emerge regarding the efficacy strategy-based approaches in Spanish to address cognitive sequelae common to a number of neurological conditions. Finally, we hear from Drs. Pappadis and Sander who provide insights from research into common misconceptions about brain injury among Hispanics and issues of health literacy. The ability of brain-injury survivors to understand and benefit from information they receive from healthcare providers is an important consideration for clinicians striving to improve services for diverse populations. I am thankful for the contributions of the authors to bring light to some of the many pressing issues affecting Spanish-speakers with brain injury around the world and hope that readers can extrapolate from these articles to serve a diverse population of individuals who may differ in language and culture from that of the provider. The recognition that we each see the world through a unique lens colored by our personal experiences is a key element at the basis of culturally humble approaches to providing services and conducting research for the diverse population of brain injury survivors.

References 1.

Fernández Vítores D, Instituto Cervantes. EL ESPAÑOL: Una Lengua Viva. Informe 2020.; 2020. doi:NIPO: 110-20-018-0

Eberhard DM, Simons GF, Fennig CD. Ethnologue: Languages of the World. 24th ed. (Eberhard DM, Simons GF, Fennig CD, eds.). Dallas, Texas: SIL International; 2021.

C G, PP Y, N J, et al. Presence of a dedicated trauma center physiatrist improves functional outcomes following traumatic brain injury. J Trauma Acute Care Surg. 2016;80(1):70-75. doi:10.1097/TA.0000000000000890

Noe-Bustamante L. Facts about U.S. Latinos and Their Diverse Origins | Pew Research Center.; 2019.

U.S. Census Bureau. Language Spoken at Home by Ability to Speak English for the Population 5 Years and Over (Hispanic or Latino) American Community Survey 1-year estimates. https://censusreporter.org. Published 2019. Accessed September 15, 2021.

Judd T, Capetillo D, Carrión-Baralt J, et al. Professional considerations for improving the neuropsychological evaluation of hispanics: A national academy of neuropsychology education paper. Arch Clin Neuropsychol. 2009;24(2):127-135. doi:10.1093/arclin/acp016

BRAIN INJURY professional 7

An Overview of Traumatic Brain Injury Care in Latin America Melina Longoni Di Giusto, MD Juan Carlos Arango Lasprilla, PhD

Traumatic brain injury (TBI) is an acquired insult to the brain from an external mechanical force that may result in temporary or permanent impairment 1. At present, the World Health Organization (WHO) has identified TBI as one of the leading causes of disability and death in young adults in the world, and it is expected that by 2030 it will be the third leading cause of premature death in the world 2. Regarding the incidence of TBI in Latin American countries, there are no precise data given the absence of national records, however, some epidemiological studies conducted in countries such as Mexico23, Ecuador 3, Argentina 4 or Brazil 5 have reported incidence rates between 70 to 360 new cases per 100,000 inhabitants with traffic accidents as the main cause 6–9, followed by acts of violence. The mortality rate after trauma in Latin America is estimated to be 75,5 per 100,000 inhabitants 7. According to WHO, more than 90% of deaths caused by a TBI occur in low-middle income countries are due to a number of risk factors such as living below the poverty line, residing in a conflict zone 10, the lack of prevention measures, and poor health systems 11, as is the case in Latin American countries. Poor health care is one of the factors that most influences the high mortality rate in Latin American countries. In the first place, there is an inadequate distribution of patients across the various hospitals due to the lack of regionalization. In addition, the poor organization of emergency transport leads to a considerable delay in arriving at the hospital. Moreover, unlike high-income countries, where air transport is generally available for rapid transportation in the most severe cases, in Latin American countries, transport is by land, which may take several hours, especially when coming from rural areas. In addition, on many occasions, due to this lack of organization, patients must be relocated to other centers when it is discovered that there is no availability of beds in the intensive care unit (ICU), further decreasing the chance of survival. Secondly, hospitals often do not have sufficient resources. This is often seen in the lack of adequate personnel as well as a scarcity of diagnostic or intervention tools or technology, such as basic neuromonitoring systems, necessary to provide quality care. In fact, in many of these countries there are not enough neurosurgeons to meet the demands of the population, and the few that are available are usually located in major cities, leaving suburban and rural areas without adequate coverage.

8 BRAIN INJURY professional

Finally, the lack of qualified specialists tends to result in the absence of long-term follow-up, or follow-up carried out by another nonspecialized professional, increasing the risk of severe disability with higher costs for the healthcare system, the family, and society 12. In most Latin-American countries there is no universal public healthcare. In some countries, the percentage of people without healthcare coverage is high. For example, in Bolivia, 39% to 44% of the population is without healthcare coverage. Panama happens to have one of the highest levels of coverage in the public system (85%). The lowest percentages of the populations with healthcare coverage within the public system correspond to Bolivia (35%), Paraguay (46%), Argentina (48%), and Uruguay (53%). In all countries the coverage of the private system is much lower than that of the public system, especially in El Salvador, Honduras, Guatemala and Peru. Therefore, considering the low income of individuals within these populations, the percentage of patients who are able to receive the benefits of rehabilitation is very low 13. For those with TBI in most Latin American countries who present to the emergency room, the primary focus of care is to ensure their survival. In the event that the patient is admitted to an inpatient rehabilitation facility after leaving intensive care, they are evaluated by the rehabilitation specialist and the entire interdisciplinary team, setting goals according to the patient's presentation to maximize functional independence and prevent secondary complications. Only in recent years, in some hospitals, in a few countries, has the rehabilitation physician (physiatrist) been incorporated into the ICU. For this reason, the early intervention of a rehabilitation team is scarce; most being limited to having a physiotherapist in the ICU. The lack of early intervention by rehabilitation providers, places patients at greater risk for complications in the subacute and chronic stage, such as pressure injuries, contractures, joint deformities, pain, etc. In addition, a high percentage of patients who survive a TBI are left with physical, cognitive, emotional, and behavioral sequelae that lead to varying degrees of disability, limiting or preventing return to employment and reintegration into other aspects of society 14–16. As expected, the rehabilitation services offered to these patients once they are discharged are quite scarce and depend mainly on the family's financial resources since public support is limited or nonexistent.

Because there is a general scarcity of local inpatient rehabilitation hospitals for the subacute stage of recovery after brain injury, most patients will return home to be cared for by family members. In the culture of Latin American countries the family unit has an essential value, so at the moment when an individual survives an injury that results in a disability, it is their family members who take complete responsibility for all aspects of the person’s care. The lack of resources and supports, can result in a significant amount of burden on family caregivers 17. Regarding this issue of caregiver burden, several studies have been carried out in Latin American countries with the aim of determining the impact that TBI has on caregivers. For example, Arango-Lasprilla et al. (2010) analyzed the most important needs in a group of family caregivers in Colombia, who reported access to health information and community and professional support networks as primary needs for the care of their relative 18. Similarly, Leibach et al. (2014) studied the relationship between family needs and mental health of a group of Mexican caregivers and found that family health needs were associated with all mental health indices of the caregiver 19. Household needs were associated with the caregiver's depression, burden and anxiety. In addition, social support needs were related to satisfaction with the caregiver's life, information needs were associated with burden, and financial needs with self-esteem. On the other hand, Stevens et al. (2013) concluded in their study with the Mexican population that family dynamics have a strong influence on the mental health of the patient with even greater influence on the caregiver 20. Caregivers with high family satisfaction and family cohesion tend to have a low burden and high satisfaction with life that in turn is related to lower levels of depression 21.

In summary, while there is a need for further study on the epidemiology of TBI in Latin America, existing studies have shown the incidence of TBI to be high with contributing factors associated with the socioeconomic situation of these countries. On the one hand, a high percentage of citizens live in conditions of poverty and conflict zones, which give rise to greater risk for injury. On the other hand, there is a scarcity of prevention policies or health systems that provide a solution to this problem. People who sustain a TBI, therefore, tend to suffer a series of sequelae that, in most cases, are not treated in rehabilitation centers, given the lack of public support, availability of care, and the economic limitations of family members. For these reasons, the economic, social, and emotional burden falls on family caregivers, affecting their mental health and quality of life with poorer long-term outcomes for TBI survivors. In order to improve TBI prevention and care in Latin America, we offer some recommendations for all Latin American countries, based on Corley and colleagues (2019) and our experience in the field 22. To prevent TBI and assist rapid assistance and intervention: • • • • •

Legislate safety in the work place and mechanisms for compliance, Legislate public health measures such as the mandatory use of helmets and seatbelts, Finance and prioritize well-designed and properly maintained road infrastructure, Include pre-hospital, such as paramedic and/or ambulance services, as part of national healthcare plans, Strengthen pre-existing trauma infrastructure and personnel for neurotrauma (e.g., CT scanner, critical care unit, 1 neurosurgeon per 200,000 people).

BRAIN BRAIN INJURY INJURY professional professional 99

To improve in-hospital and follow-up TBI care: • • •

• •

embed neurotrauma within a universal health coverage package, develop more specialized in-patient rehabilitation services and outpatient rehabilitation centers, increase the number of rehabilitation professionals in the health system, including, physiatrists, psychologists, occupational therapists, speech and language pathologists, and physical therapists, form partnerships to work together with family and community services create national trauma registries with systematic data collection about TBI outcomes

To build capacity of neurotrauma and neurorehabilitation health care professionals: • • •

engage in cross-country partnerships to share best practices, offer quality training, possibly with international experts as possible, develop specialized post-graduate programs and continuing education programs,

To advance knowledge in the field: • •

develop and validate culturally appropriate assessment and diagnosis tools, develop and conduct effectiveness research on rehabilitation programs tailored to the cultural and socioeconomic characteristics of Latin America (e.g., to return to work or integrate into the community and/or family life).

All of this together will help to advance the development of more optimal trauma prevention and care systems in Latin America. This will not only improve survival rates, but also the quality of life of these patients and their families. References 1. Capizzi A, Woo J, Verduzco-Gutierrez M. Traumatic Brain Injury: An Overview of Epidemiology, Pathophysiology, and Medical Management. Med Clin North Am. 2020;104(2):213-238. doi:10.1016/j. mcna.2019.11.001 2. Murray CJL, Lopez AD, World Health Organization, World Bank, Harvard School of Public Health. Global health statistics : a compendium of incidence, prevalence and mortality estimates for over 200 conditions. 1996. 3. Ortiz-Prado E, Mascialino G, Paz C, et al. A Nationwide Study of Incidence and Mortality Due to Traumatic Brain Injury in Ecuador (2004-2016). Neuroepidemiology. 2020;54(1):33-44. doi:10.1159/000502580 4. Marchio PS, Previgliano IJ, Goldini CE, Murillo-Cabezas F. [Head injury in Buenos Aires city: a prospective, population based, epidemiologic study]. Neurocirugia (Astur). 2006;17(1):14-22. 5. Ferreira de Andrade A, Marino R, Ciquini O, Gadelha Figueiredo E, Guelman Machado A. Guidelines for neurosurgical trauma in Brazil. World J Surg. 2001;25(9):1186-1201. doi:10.1007/s00268-001-0081-9 6. Bárcena-Orbe A, Rodríguez-Arias CA, Rivero-Martín B, et al. Revisión del traumatismo craneoencefálico. Neurocirugia. 2006;17(6):495-518. doi:10.1016/s1130-1473(06)70314-1 7. Charry J, Cáceres J, Salazar A, López L, Solano J. Trauma craneoencefálico. Revisión de la literatura. Rev Chil Neurocir. 2017;43:117-182. 8. Pueblo D. Daño cerebral sobrevenido en España: un acercamiento epidemiológico y sociosanitario. Inf del Defensor, Madrid. 2005. 9. Jaramillo FJ, González G, Vélez P, Bran ME, Restrepo D, Duque A. Factores de riesgo asociados con letalidad y complicaciones tempranas en pacientes con trauma craneoencefálico cerrado. Colomb Med. 2001;32(1):49-56. 10. MRC CRASH Trial Collaborators, Perel PA, Olldashi F, et al. Predicting outcome after traumatic brain injury: Practical prognostic models based on large cohort of international patients. BMJ. 2008;336(7641):425-429. doi:10.1136/bmj.39461.643438.25 11. Gosselin R. Injuries: The neglected burden in developing countries. Bull World Health Organ. 2009;87(4):246. 12. Rubiano AM, Puyana JC, Mock CN, Bullock MR, Adelson PD. Strengthening neurotrauma care systems in low and middle income countries. Brain Inj. 2013;27(3):262-272. doi:10.3109/02699052.2012.750742 13. Bonow RH, Barber J, Temkin NR, et al. The Outcome of Severe Traumatic Brain Injury in Latin America. World Neurosurg. 2018;111:e82-e90. doi:10.1016/j.wneu.2017.11.171

10 BRAIN INJURY professional

14. Arango-Lasprilla, J.C. Olabarrieta-Landa, L. Laseca-Zaballa G, Carvajal-Castrillón J, Ramos-Usuga D. Traumatismo craneoencefálico en adultos. In: Arango-Lasprilla JC, Olabarrieta-Landa L, eds. Daño Cerebral. Mexico: Editorial Manual Moderno.; 2018:151-201. 15. De Noreña D, Ríos-Lago M, Bombín-González I, Sánchez-Cubillo I, García-Molina A, Tirapu-Ustárroz J. Effectiveness of neuropsychological rehabilitation in acquired brain injury (I): Attention, processing speed, memory and language. Rev Neurol. 2010;51(11):687-698. doi:10.33588/rn.5111.2009652 16. Khan F, Baguley IJ, Cameron ID. 4: Rehabilitation after traumatic brain injury. Med J Aust. 2003;178(6):290-295. doi:10.5694/j.1326-5377.2003.tb05199.x 17. Coy AE, Perrin PB, Stevens LF, et al. Moderated mediation path analysis of Mexican traumatic brain injury patient social functioning, family functioning, and caregiver mental health. Arch Phys Med Rehabil. 2013;94(2):362-368. doi:10.1016/j.apmr.2012.08.210 18. Arango-Lasprilla JC, Quijano MC, Aponte M, et al. Family needs in caregivers of individuals with traumatic brain injury from Colombia, South America. Brain Inj. 2010;24(7-8):1017-1026. doi:10.3109/02699052.201 0.490516 19. Leibach GG, Trapp SK, Perrin PB, et al. Family needs and TBI caregiver mental health in Guadalajara, Mexico. NeuroRehabilitation. 2014;34(1):167-175. 20. Stevens LF, Perrin PB, Hubbard R, Díaz Sosa DM, Espinosa Jove IG, Arango-Lasprilla JC. Using multiple views of family dynamics to predict the mental health of individuals with TBI and their caregivers in Mexico. NeuroRehabilitation. 2013;33(2):273-283. doi:10.3233/NRE-130955 21. Perrin PB, Stevens LF, Sutter M, et al. Exploring the connections between traumatic brain injury caregiver mental health and family dynamics in Mexico City, Mexico. PM R. 2013;5(10):839-849. doi:10.1016/j. pmrj.2013.05.018 22. Corley J, Barthèlemy EJ, Lepard J, et al. Comprehensive Policy Recommendations for Head and Spine Injury Care in Low- and Middle-Income Countries. World Neurosurg. 2019;132:434-436. doi:10.1016/j. wneu.2019.08.240 23. Torres Cuevas LE. Características clínicas y sociodemográficas del paciente con diagnóstico de Traumatismo Craneoencefálico que acude al servicio de urgencias. Tesis, Universidad Autónoma de Querétaro, Mexico, 2020.

Author Bios Melina Longoni, MD, is an MD specialized in Physical Medicine and Rehabilitation, Hyperbaric Medicine, Wound Care, and Expert in Natural Therapies. She received her medical degree from the Universidad Abierta Interamericana in Rosario, Argentina, where she also works in the research department of the University. Currently she is the Medical director of the ReDel Rehabilitation Center in Tigre, Buenos Aires, the Director of Disability of the Municipality of Ituzaingó, Ministry of Health in Buenos Aires. She also serves as a scientific advisor for BBraun Medical Argentina and is involved with numerous professional organizations including Secretary for the Argentine Interdisciplinary Association for Wound Healing (AIACH) where she also is the coordinator of the Rehabilitation Committee. She is the President of the Latin American Medical Rehabilitation Association - Residents Committee (AMLAR-Res), Vice Chair of the America´s Committee of A.S.I.A., and a member of the Latin American Committee for Rehabilitation Research (CLAGIR) and the Advisory Board Sustain Our Abilities. Juan Carlos Arango-Lasprilla, PhD, is currently a Research Professor at BioCruces Vizcaya Health Research Institute in Bilbao, Spain. He has been instrumental in securing grant funding as PI and co-PI. Dr. Arango has received many awards for his accomplishments in the area of neuropsychology including awards from the National Academic of Neuropsychology, the American Psychological Association, the International Brain Injury Association, the International Neuropsychological Society and The American Congress of Rehabilitation Medicine. He has published more than 350 articles and book chapters and edited 11 books. Dr. Arango has been a guest editor of 12 special issues in prominent rehabilitation journals. Dr. Arango has lectured at Grand Rounds at more than 100 different universities across the globe. He organized and chaired 4 international conferences on neuropsychology, cultural issues and Brain Injury Rehabilitation. Dr. Arango is a founding member of the Colombian Neuropsychological Society, and he founded the IberoAmerican Journal of Neuropsychology. His research focuses on understanding and addressing the cognitive, psychological, and emotional needs of individuals with brain injury and their families. He is particularly interested in under-served populations, such as Spanish speakers, and carries out research in the US, Europe, and Latin America. He was PI of a large, multi-center norming study in which more than 14,000 adults and children from over 15 Latin American countries participated. Thanks to his leadership, normative data by country is now available for the 12 most commonly used neuropsychological tests in each respective population.

Acquired Brain Injury in Spain Laiene Olabarrieta Landa, PhD

The term acquired brain injury (ABI) is used here to refer to any disorder (e.g. traumatic brain injury, stroke, brain tumor) caused by an injury to the brain after birth that is not degenerative. Even though there is a scarcity of national epidemiological studies, the Spaniard Federation of Brain Injury (FEDACE)1 has recently collected data coming from their own study from a national population of people with disabilities, and a prior survey about “disability, personal autonomy and dependency situations” 2. As the last survey was conducted in 2008, here we present the most recent data from the FEDACE´s study and national database of people with disability. During 2010-2012, stroke was the leading cause of ABI in Spain, followed by traumatic brain injury (TBI) and anoxia1. In this period, 457,578 hospital discharges were due to stroke, and its annual incidence increase was 3.8%1. In fact, stroke is the leading cause of ABI and it was the third cause of death in 2020 after COVID-19 and cardiovascular diseases3. Mean age was 73.5 and mean hospital length 11.75 days. Sex disparity was evident, with males representing 60% of the discharges within those between the ages of 35-74, while females make up the majority of cases in people older than 74, probably due to females’ higher life expectancy. TBI accounted for 81,716 hospital discharges. As global epidemiology studies report, males were at higher risk of TBI (67% of hospital discharges) across all ages, except for those older than aged 84. Mean age was 56 and mean hospital length 15 days. Finally, 1,442 people were discharged after an anoxic injury, of whom 63% were males. Mean age was 64, with an increased incidence starting from 45 years old, and a mean hospital length of stay of 17 days1. As mortality has been reduced due to medical advances and collaborative improvements among health professionals, healthcare units (inside and outside of hospital settings), and social services (e.g. stroke code implementation), nowadays more people survive an ABI, which leads to short- and long-term disabilities. Disability arising from ABI is an increasing problem in Spain. Since the year 2012, 113,132 people with ABI were assessed for disability recognition. The majority were people with stroke and TBI, and 65% obtained a degree of disability certification of greater than or equal to 65% 1.

12 BRAIN INJURY professional

According to Gustavsson et al. (2011), the total cost of brain disorders in Europe was estimated at €798 billion in 2010, which 60% constituted direct costs (healthcare and non-medical costs) and 40% was related to patients’ production loss (indirect costs)4. The total cost of brain disorders, in million euros, in Spain was 64,542; and ABI disorders were as follows: brain tumor 6,219; stroke 4,666; and TBI 2,655. Cost per person was 20,538 euros (€) for brain tumor, 7,246€ for stroke, and 7,921€ for TBI. However, within Spaniard autonomous communities the cost of ABI may vary. For example, while in the Valencian autonomous community the total cost was estimated in 22,988,496€ per year 5, in the Basque Country and the Community of Navarre was of 61,900,000€ 6. In any case, it is known that family members assume informal costs, which represents almost half of the ABI total cost. The Spanish national health-system offers services and resources through the phases of brain injury recovery that vary across autonomous communities. A theoretical model of ABI health care does exist, proposed by Ignacio Quemada et al. (2007), technical Director of the Menni Network for Brain Injury Services 7; but in practice, lack of coordination, regulation, and integrative public policies are evident, from the acute to the chronic phase post-injury 8 . The Valencian community is the only region with an integrative care strategy for ABI that started in 2017. Medical care during the acute phase of ABI is very well structured in most regions, especially regarding stroke. Most autonomous communities have inpatient stroke units, stroke teams, and “tele-stroke” services, but services for other etiologies are not so well organized. For example, trauma specific codes are scarce (e.g. Andalusia, Balearic Islands and Canarias, Catalonia, and Navarre), as well as specialized TBI care units (e.g. Andalusia). Primary prevention strategies, however, have been implemented such as campaigns to reduce cerebrovascular risk factors, road traffic safety programs, or prevention strategies to minimize accidents in workplace 8. Health services beyond the acute phase are characterized by lack of regulations that connect medical care and social services, and lack of specialized resources for people with ABI.

According to Verdugo et al. (2021), of the 3000 places for patients with ABI in the subacute phase, only 19% are public: 26 hospital rehabilitation units (10 public), 19 day-care hospital rehabilitation units (4 public), and 24 ambulatory neurorehabilitation units (2 public) 8. Compared to the acute phase, services offered during the subacute phase vary even more across regions. Before hospital discharge, the main service is physiotherapy and in some hospitals, speech and occupational therapy. Neuropsychology services are scarce (e.g. Asturias, Cantabria, Madrid, Navarre) and not present in all hospitals of the same region. For example, in Castilla-La Mancha and Murcia neuropsychological services are only present in one hospital. Cantabria has neuropsychology services that are private but some amount of cost is covered by the public system. This hybrid between public and private services is called “concertado” in Spain. After discharge, the duration of rehabilitation services ranges from three (e.g. Andalusia) to 18 months (Extremadura), although in some cases it is maintained until rehabilitation aims are met (e.g. Aragón. Canarias, La Rioja). In the subacute phase, multidisciplinary teams are involved in the treatment, mostly speech therapists, occupational therapists, and physiotherapists. Neuropsychologists are increasingly involved in these teams (e.g. Islas Baleares, CastillaLa Mancha, Galicia). Family-oriented services are very scarce and mostly focused on psychoeducation and, in some cases, include a social worker intervention (e.g. Andalusia, Galicia, Ceuta and Melilla). Specialized family interventions are provided in Asturias8. Once sequelae are stable, patients may continue to need more social services and additional rehabilitation during the chronic phase to maintain their achievements, improve independence and participate actively in their community.

Rehabilitation day-centers and ABI associations such as Asociación de daño cerebral sobrevenido de Madrid (APANEFA), Asociación de Traumatismo Cráneo-encefalico y daño cerebral adquirido (ATECE), or Federación Andaluza de Daño Cerebral (FANDACE), cover this objective. In Spain there are 28 ABI-specialized day centers, 17 of them managed by ABI associations, and only 3 are public; and 6 residential units and 2 protected flats, also managed by ABI associations8. ABI associations are core for these patients, as they have assumed patients' care and tried to fill the rehabilitation needs not covered by the health system, such as neuropsychology services, occupational therapy, family intervention, a host of additional services, at the subacute, phase and especially at chronic phase. Most of the time, rehabilitation services are covered by social security. For example, during 2010-2021, 96,18%, 71,28% and 90,36% of stroke, TBI and anoxia hospital discharges, respectively, were covered by social security (Quezada et al., 2019). Sometimes, patients may be referred to external private ABI-specialized rehabilitation units (e.g. Aita Menni hospitals, Guttmann Institute, Uner Clinic), that may be covered by social security, or through private health insurance. Several institutions, such as ABI associations, FEDACE, the commissioner of the state, and the Institute for the Elderly and Social Services (IMSERSO) have described some of the most important challenges that Spain is currently facing regarding ABI. One important problem is the lack of rigorous national epidemiological studies. In 2019, the commissioner of the state pointed out the need for establishing an ABI common identification and registration code, and urged The Ministry of Health, Consumer Affairs and Social Welfare to conduct an ABI epidemiological study in Spain 9.

Textbook of Traumatic Brain Injury, Third Edition Edited by Jonathan M. Silver, M.D., Thomas W. McAllister, M.D., and David B. Arciniegas, M.D.

espite the increased public awareness of traumatic brain injury (TBI), the complexities of the neuropsychiatric, neuropsychological, neurological, and other physical consequences of TBI of all severities across the lifespan remain incompletely understood by patients, their families, healthcare providers, and the media.

Keeping pace with advances in the diagnosis, treatment, and science of TBI, the Textbook of Traumatic Brain Injury, Third Edition, comprehensively fills this gap in knowledge. Nearly all 50 chapters feature new authors, all of them experts in their field. The Textbook of Traumatic Brain Injury is a must-read for all of those working in any of the multitude of disciplines that contribute to the care and rehabilitation of persons with brain injury. This new volume is also a potentially useful reference for policymakers in both the public and private sectors. 2019 • 985 pages • ISBN 978-1-61537-112-9 • Hardcover • $195.00 • Item #37112 2019 • 985 pages • ISBN 978-1-61537-247-8 • eBook • $156.00 • Item #37247 Order @ www.appi.org Email: appi@psych.org | Phone: 1-800-368-5777 20% Discount for American Psychiatric Association Members 25% Discount for APA Resident-Fellow Members AP2106_Half 4C_BrainInjury.indd 1

AP2119A

10/22/2021 10:38:27 AM

BRAIN INJURY professional 13

Knowing the national incidence/prevalence of ABI is an important step toward understanding the true impact on patients, families, and the health system, and can improve the implementation of preventive strategies, healthcare interventions, and social services. As pointed out above, in general, there is no integrative public policies for ABI, and there is lack of public and private specialized ABI health and social resources and strategies, especially in subacute and chronic phases 1,8, and inequality in the access to care within and across communities1. Moreover, there is little coordination and information between health and social services through all phases of recovery, but especially in long-term care services. Therefore, it is common for patients and their families to get lost in the healthcare system. In addition, although stroke services may be well established, other etiologies are not so well covered (e.g. anoxia, infectious brain diseases). For this reason, the commissioner of the state also urged to the Ministry of Health to take action within the national healthsystem to set up an integrative public services for people with ABI, as well as to the Ministry of Labor and Social Affairs to improve the coordination between health and social administrations9. Rehabilitation services at the subacute phase are mostly limited to the physical dimension, with fewer services oriented to cognitive, emotional, behavioural or social sequelae. More multidisciplinary teams are needed before and after discharge to offer a more holistic and intensive intervention. Moreover, a lack of neuropsychologists is evident in the national public health-system despite the essential nature of their role for patients with ABI 10. Therefore, the commissioner of the state (2019) emphasized a) the need to promote the training and recruitment of neuropsychologists and their incorporation into these multidisciplinary teams, b) not to limit rehabilitation to physical sequelae, but include cognitive, emotional, and behavioural impairments; c) the promotion of a multidisciplinary team in the national health-system at all levels 9. Finally, services and specialists for the treatment of the pediatric ABI population are even more scarce or non-existent9 although this pattern is gradually changing. In conclusion, in Spain, stroke is the main cause of ABI. The national public health system is well organized for treatment at the acute phase, but services at the subacute and chronic phases are not well established due to the lack of public and private specialized ABI health and social resources, rules, and strategies.

14 BRAIN INJURY professional

The total cost of ABI is an important issue for the Spaniard social security, even though family members assume almost half of the ABI total cost. ABI associations have assumed the role of health and social providers when the health-system cannot, and they become an important resource for patients and families because they provide educational information, and specialized healthcare and social support especially after discharge. There is an increased effort to fill the gaps in the healthcare and social system thanks to ABI public and private associations and the national institutes’ initiatives that are moving toward making integrative ABI strategies a common part of care as did the Valencian community in 2017-2020. References 1.

Quezada García MY, Huete García A, Bascones Serrano LM. Las Personas Con Daño Cerebral Adquirido En España.; 2019.

Instituto Nacional de Estadística. Encuesta sobre discapacidades, autonomía personal y situaciones de dependencia. https://www.ine.es/dyngs/INEbase/es/operacion.htm?c=Estadistica_C&cid=125473 6176782&menu=resultados&idp=1254735573175. Published 2008.

Instituto Nacional de Estadística. Defunciones según causa de muerte. Avances enero-mayo 2020. https://www.ine.es/mapas/svg/indicadoresDefuncionCausa.htm. Published 2020.

Gustavsson A, Svensson M, Jacobi F, et al. Cost of disorders of the brain in Europe 2010. Eur Neuropsychopharmacol. 2011;21(10):718-779. doi:10.1016/j.euroneuro.2011.08.008

Generalitat Valenciana - Conselleria de Sanitat Universal. Estrategia Para La Atención Al Daño Cerebral Adquirido En La Comunitat Valenciana 2017-2020.; 2017.

Asociación de Daño Cerebral de Navarra (ADACEN). Resumen del estudio: La carga global del daño cerebral adquirido en Navarra y País Vasco. http://www.adacen.asociacionespamplona.es/files/423863-annex/resumen_informe_javier_mar.pdf. Published 2010.

Quemada JI, Ruiz MJ, Bori I, Gangoiti L, Marín J. Modelo de Atención a Las Personas Con Daño Cerebral. IMSERSO; 2007.

Verdugo MÁ, Aza Hernández A, Fernández Sánchez M. Estudio de Investigación. Modelos de Atención Al Daño Cerebral En España.; 2021.

Defensor del Pueblo. La atención específica al dano cerebral adquirido infantil. Madrid Def del Pueblo. 2019.

10.

Yeates KO, Levin HS, Ponsford J. The Neuropsychology of Traumatic Brain Injury: Looking Back, Peering Ahead. J Int Neuropsychol Soc. 2017;23(9-10):806-817. doi:10.1017/S1355617717000686

Author Bio Laiene Olabarrieta Landa, PhD, obtained her PhD in Psychology at the University of Deusto and obtained her postdoctoral training (Juan de la Cierva Postdoctoral Training Grant) at the BioCruces Bizkaia Institute, where she worked on Dr. Juan Carlos Arango-Lasprilla’s research team.. She is currently a professor and researcher in the Health Sciences Department of the Public University of Navarre (UPNA) in Pamplona, Spain. She has published 31 Journal Citation Report articles, edited three books and published 23 book chapters related to brain injury and neuropsychology. She is currently the editor of the Revista Iberoamericana de Neuropsicología Journal.

Canoeing at Vinland’s main campus in Loretto, Minnesota

drug & alcohol treatment for adults with disabilities Vinland Center provides drug and alcohol treatment for adults with cognitive disabilities, including traumatic brain injury, fetal alcohol spectrum disorder and learning disabilities. We make all possible accommodations for cognitive deficits and individual learning styles. Located in Loretto, Minnesota — just 20 miles west of Minneapolis.

(763)479-3555 • VinlandCenter.org Project19_Layout 1 5/1/20 4:03 PM Page 1

If you tried to see us at ABI2020 and we were just too crowded...sorry! But we did get to meet a lot of you. Ask anyone who stopped by our booth, they were intrigued. They could actually lift more weight and do more reps when they were wearing our socks or stepping on our insoles. We had dumbbells to prove it. We also demonstrated how our products instantly improve balance and range of motion. We tipped over hundreds of you (until you were wearing our socks). Think about what that could do for your patients. If we had an a QEEG with us we could have shown you the change in brain activity that happens the instant our product is in contact with your foot. We're changing lives. Check it out. It's a fascinating, aﬀordable, easy to use product that's improving quality of life, everyday.

Restore-Ragland

Better orBalance Instantly your money back! Restore-Roswell

Restore-Lilburn

Restore Neurobehavioral Our Center is a residential, post acute healthcare organization revolutionary new technology is woven into the dedicated exclusively to serving adults with acquired injury and who molded also present to insoles. severe behavioral problems. bottom of brain our socks intowith the moderate top of our Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services It provides better balance and stability instantly! to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, See for yourself: is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).

www.SeeOurSocksInAction.com Stan Esecson 949.547.1683

www.restorehealthgroup.com 800-437-7972 ext 8251 BRAIN INJURY professional PROFESSIONAL 39 BRAIN INJURY 15

Considerations in the Neuropsychological Assessment of Spanish-speaking Adults Giselle Leal, PsyD

The United States’ population is diversifying faster than predicted with a notable increase in ethnic minority groups. As of 2019, 60.6 million Hispanics are the largest ethnic minority group of the United States, comprising 18.5 percent of the nation’s total population 1 . In 2019, 12 states (i.e., Arizona, California, Colorado, Florida, Georgia, Illinois, New Jersey, New Mexico, New York, North Carolina, Pennsylvania and Texas) had a population of one million or more Hispanic inhabitants. Different Hispanic groups have varying degrees of language fluency, with 71.1 percent of Hispanics reporting that they speak a language other than English at home and a total of 28.4 percent of Hispanics residing in the United States reporting that they are not fluent in English 1. Factors such as lack of health insurance, limited access to preventive care, and language and cultural barriers influence health outcomes for the Hispanic population. As such, Hispanics are particularly vulnerable to certain medical conditions, including traumatic brain injuries 2.

For instance, the word straw is referred to as popotes in Mexico, pitillo in Colombia, and sorbetes in Argentina.

In individuals with brain injury, a neuropsychological evaluation is a valuable tool in the process of determining patient-specific cognitive, psychological, and adaptive functioning, as well as when predicting level of independence in day-to-day functioning, disability benefits, return to work, need for treatment, and academic potential 3 . Understanding brain functioning in the context of culture will increase the validity and utility of an evaluation and contribute to better health outcomes for the examinee.

Selecting cognitive tests and normative data when evaluating Spanish-speaking clients is not a straightforward or simple process. Using a test that was developed and standardized within Western culture may not apply or be valid when used with a different group 10 . Similarly, using norms that were created for English speakers with Spanish-speaking individuals may result in inaccurate diagnostic impressions 11. There is evidence to suggest that the clinical utility of symptom validity tests with Hispanics that have sustained a TBI is influenced by level of education and may warrant adjustment of cutoff scores, when compared to those utilized with English-speaking individuals, in order to avoid misclassification of malingering or poor effort 12,13. Reasonable efforts should be made to carefully select tests and norms that are appropriate and valid. When there are no country-specific tests or normative samples, the neuropsychologist should attempt to find a measure that is a close representation of the client’s cultural background.

Neuropsychological assessment of Spanish-speaking individuals does not come without a myriad of challenges, most of which are associated to the limited number of culturally sensitive neuropsychological instruments and appropriate normative samples. Moreover, an ethical evaluation of this population includes the consideration of socio-cultural variables including language, education, attitudes towards testing, and level of acculturation, among others. Spanish-speaking populations share various attributes; however, viewing Hispanics/Latinos as a homogeneous ethnic minority group does not facilitate or encourage the appreciation of the differences in sociocultural characteristics across groups 4,5. There are regional variations among Spanish speakers, particularly in vocabulary and pronunciation. Certain foods and everyday objects may be referred to in different ways depending on the country or even depending on the region within the country.

16 BRAIN INJURY professional

Another aspect that contributes to the complexity of neuropsychological assessment of Spanish-speaking adults is the concept of acculturation. According to Berry (2016), acculturation refers to the cultural and psychological change that occurs when two or more cultural groups and their members have first-hand contact with each other 6. Various studies have suggested that acculturation plays a role in test performance, as healthy individuals with low acculturation may underperform on cognitive tests when compared to White Americans, primarily due to cultural reasons as opposed to neurological impairment 7. As such, this variable should be taken into consideration when interpreting test results. Several questionnaires have been developed to assess level of acculturation, which include questions about language, media use and social relations 8,9.

Cultural considerations and limitations of using selected measures with a specific individual should be identified and noted during the process of interpretation and documentation (American Psychological Association, 2017). For instance, a measure of intelligence normed in Spain is likely to yield a low score on a subtest that assesses general fund of knowledge if administered to an individual from a different country. The item responses should be examined qualitatively to determine the effects of culture on the low score, and the limitations should be included in the written report.

When evaluating individuals who are bilingual, language dominance has to be established before cognitive tests are selected 15. When possible, the neuropsychologist should assess the individual directly in the language of the evaluation instead of using interpreter and translators (Ethical Standards 2.01b & 9.02c; American Psychological Association, 2017). It is not as simple as merely translating a test from English to Spanish, because linguistic translation does not necessarily imply a cultural adaptation. A test translated into Spanish may not be evaluating the same cognitive construct that it was originally developed to assess, as cognition takes place in the context of culture 16. Moreover, a translation may not necessarily consider the influence that linguistic and cultural factors have on a test’s psychometric properties 17,18. Assuming that a test has the same meaning across different language groups can be problematic, as it increases the chance of over diagnosing cognitive dysfunction in Spanish-speaking individuals 19. For instance, in the case of Digit Span when digits are selected they must take into consideration the number of syllables on each word. The number four in English has one syllable, while cuatro in Spanish has two syllables, and thus numbers with more than one syllable may suggest a heavier cognitive load 20. The fact that a test was not developed to assess verbal abilities does not imply that it is free of the influence of culture 10,21. For instance, performance on non-verbal timed tests (e.g., Trail Making Test A) may yield longer time for completion among Spanish-speakers based on variations in cultural attitudes or the mere perception of time 22 when compared to English-speaking individuals.

For Hispanics, completing tasks in a careful and accurate manner is seen as more crucial than completing tasks in a speedy manner. Therefore, when asked to complete a task “as quickly as possible without making mistakes” the instruction of prioritizing both speed and quality may seem contradictory for a Spanish-speaking adult 4. Based on the aforementioned, clinical neuropsychologists working with Spanish-speaking adults with brain injury are tasked with assessing a largely heterogeneous group with varying degrees of acculturation, language fluency, regionalisms, and educational attainment. Engaging in cross-cultural neuropsychological work implies understanding and making sense of how the differences across Hispanic/Latino groups manifests during a neuropsychological evaluation. It is the clinician’s ethical obligation to take the necessary steps to ensure that the Spanish-speaking client is evaluated in a competent manner, taking into consideration the linguistic, cultural, and clinical aspects 23. After identifying the client’s needs, the professional should recognize the extent of their competency and expertise as it relates to working with Spanish-speaking individuals and decide whether a referral is warranted. When referring is not an option, a neuropsychologist should obtain training or consultation that is relevant to the client’s cultural background (American Psychological Association, 2017). Because most neuropsychological tests have been developed to be used with individuals from Western culture, there is a need for research in the development of measures in Spanish within an appropriate cultural context along with the collection of relevant normative data stratified by age and education, as appropriate.

Brain and Spinal Cord Injury Rehabilitation Programs for People of all Ages

Residential Programs • Outpatient Services • Day Treatment • Spinal Cord Rehabilitation Home & Community-Based Rehabilitation • Home Care • Vocational Programs Comprehensive Rehabilitation • Medical Care • NeuroBehavioral Programs To schedule a tour or to speak with an Admissions team member, call 800.968.6644

rainbowrehab.com BRAIN INJURY professional 17

References 1.

U.S. Census Bureau. Hispanic Heritage Month 2020. Facts for Features. https://www.census.gov/ newsroom/facts-for-features/2020/hispanic-heritage-month.html. Published 2020. Accessed September 25, 2021.

Hyder AA, Wunderlich CA, Puvanachandra P, Gururaj G, Kobusingye OC. The impact of traumatic brain injuries: A global perspective. NeuroRehabilitation. 2007;22(5):341-353. doi:10.3233/nre-200722502

Lezak MD, Howieson DB, Bigler ED, Tranel D. Neuropsychological Assessment. Fifth. Oxford University Press; 2012.

Puente AE, Ardila A. Neuropsychological Assessment of Hispanics. In: Fletcher-Janzen E, Strickland TL, Reynolds CR, eds. Handbood of Cross-Cultural Neuropsychology. Kluwer Academic Publishers; 2000:87-104. doi:10.1007/978-1-4615-4219-3_7

González HM, Tarraf W, Gouskova N, et al. Neurocognitive function among middle-aged and older hispanic/latinos: Results from the hispanic community health study/study of latinos. Arch Clin Neuropsychol. 2015;30(1):68-77. doi:10.1093/arclin/acu066

Berry JW. Theories and models of acculturation. In: The Oxford Handbook of Acculturation and Health. Oxford University Press; 2016:15-28. doi:10.1093/oxfordhb/9780190215217.013.2

Puente AE, Perez-Garcia M, Vilar Lopez R, Hidalgo-Ruzzante NA, Fasfous AF. Neuropsychological Assessment of Culturally and Educationally Dissimilar Individuals. In: Paniagua FA, Yamada AM, eds. Handbook of Multicultural Mental Health: Assessment and Treatment of Diverse Populations: Second Edition. Elsevier Academic Press; 2013:225-241. doi:10.1016/B978-0-12-394420-7.00012-6

Marin G, Sabogal F, Marin BV, Otero-Sabogal R, Perez-Stable EJ. Development of a Short Acculturation Scale for Hispanics. Hisp J Behav Sci. 1987;9(2):183-205. doi:10.1177/07399863870092005

Marin G, Gamba RJ. A New Measurement of Acculturation for Hispanics: The Bidimensional Acculturation Scale for Hispanics (BAS). Hisp J Behav Sci. 1996;18(3):297-316. doi:10.1177/07399863960183002

10.

Agranovich A V., Puente AE. Do Russian and American normal adults perform similarly on neuropsychological tests?. Preliminary findings on the relationship between culture and test performance. Arch Clin Neuropsychol. 2007;22(3):273-282. doi:10.1016/j.acn.2007.01.003

11.

Arango-Lasprilla JC. Commonly used Neuropsychological Tests for Spanish Speakers: Normative Data from Latin America. NeuroRehabilitation. 2015;37(4):489-491. doi:10.3233/NRE-151276

12.

Strutt AM, Scott BM, Lozano VJ, Tieu PG, Peery S. Assessing sub-optimal performance with the Test of Memory Malingering in Spanish speaking patients with TBI. Brain Inj. 2012;26(6):853-863. doi:10.31 09/02699052.2012.655366

13.

Vilar-López R, Gómez-Río M, Caracuel-Romero A, Llamas-Elvira J, Pérez-García M. Use of specific malingering measures in a Spanish sample. J Clin Exp Neuropsychol. 2008;30(6):710-722. doi:10.1080/13803390701684562

14.

Association AP. Ethical principles of psychologists and code of conduct. https://www.apa.org/ethics/ code. Published 2017. Accessed September 25, 2021.

15.

Puente AE, Ojeda C, Zink D, Portillo Reyes V. Neuropsychological testing of Spanish speakers. In: Geisinger KF, ed. Psychological Testing of Hispanics: Clinical, Cultural, and Intellectual Issues (2nd Ed.). American Psychological Association; 2015:135-152. doi:10.1037/14668-008

18 BRAIN INJURY professional

16.

Rivera Mindt M, Byrd D, Saez P, Manly J. Increasing culturally competent neuropsychological services for ethnic minority populations: A call to action. Clin Neuropsychol. 2010;24(3):429-453. doi:10.1080/13854040903058960

17.

González HM, Tarraf W, Fornage M, et al. A research framework for cognitive aging and Alzheimer’s disease among diverse US Latinos: Design and implementation of the Hispanic Community Health Study/Study of Latinos—Investigation of Neurocognitive Aging (SOL-INCA). Alzheimer’s Dement. 2019;15(12):1624-1632. doi:10.1016/j.jalz.2019.08.192

18.

Mungas D, Reed BR, Marshall SC, González HM. Development of psychometrically matched English and Spanish language neuropsychological tests for older persons. Neuropsychology. 2000;14(2):209223. doi:10.1037/0894-4105.14.2.209

19.

Siedlecki KL, Manly JJ, Brickman AM, Schupf N, Tang MX, Stern Y. Do neuropsychological tests have the same meaning in spanish speakers as they do in english speakers? Neuropsychology. 2010;24(3):402-411. doi:10.1037/a0017515

20.

Olazaran J, Jacobs DM, Stern Y. Comparative study of visual and verbal short-term memory in English and Spanish speakers: Testing a linguistic hypothesis. J Int Neuropsychol Soc. 1996;2(2):105-110. doi:10.1017/s1355617700000953

21.

Ardila A, Moreno S. Neuropsychological test performance in Aruaco Indians: An exploratory study. J Int Neuropsychol Soc. 2001;7(4):510-515. doi:10.1017/S1355617701004076

22.

Cores EV, Vanotti S, Eizaguirre B, et al. The Effect of Culture on Two Information-Processing Speed Tests. Appl Neuropsychol. 2015;22(4):241-245. doi:10.1080/23279095.2014.910214

23.

Author Bio Giselle Leal, PsyD, is a Clinical Neuropsychologist and Rehabilitation Psychologist on the Physical Medicine and Rehabilitation unit at Jackson Health Systems, Christine E. Lynn Rehabilitation Center. She follows patients through the different stages of care, at times from the Intensive Care Unit to the inpatient Rehabilitation Unit and Outpatient Rehabilitation program. Dr. Leal provides services in English and Spanish and clinical interests include the assessment and treatment of adults and older adults with acquired brain injuries, chronic health conditions, and neurodegenerative diseases. Research interests include cross-cultural considerations in treatment and neuropsychological evaluations, as well as ecological validity of cognitive tests.

4.875 x 4.875.qxp_front 11/1/17 12:02 Page 1

events 2022 February 11: Traumatic Brain Injury Conference, February 11, Virtual Platform. For more information, please visit www.events. myconferencesuite.com/TBI2022. March 31 – 3: AOTA Annual Conference & Expo 2022, March 31 – April 2, 2022, San Antonio, Texas. For more information, visit www.aota.org. September 21-24: Fourth International Conference on Paediatric Brain Injury, September 21 – 24, New York, New York. For more information, visit www.internationalbrain.org. 21-24: 2022 NABIS Conference on Brain Injury, September 21 – 24, New York, New York. For more information, visit www.internationalbrain.org.

We Put You First ...By improving the lives of individuals with a traumatic brain injury or other neurological impairment through residential and/or outpatient therapies. 5666 Clymer Road • Quakertown PA 18951 215-538-3488 • SuccessRehab.com

7. 2022 The U.S. Consumer Products Safety Commission found 21-24: Conference on Medical & more than 750 deaths and 25,000 hospitalizations in Legal Issues in Brain Injury, September its 10-year study of the dangers of portable electric 21 – 24, New York, New York. For more generators. https://www.cpsc.gov/es/content/briefingpackage-on-the-proposed-rule-safety-standard-forinformation, visit portable-generators www.internationalbrain.org. 8.

For the current guidelines: http://wedocs.unep. org/bitstream/handle/20.500.11822/8676/Select_

October pollutants_guidelines.pdf?sequence=2

In an April 2017 carbon monoxide poisoning at a hotel 20 – 23: AAPMR Conference, in Niles, Michigan, severalOctober first responders had to be hospitalized because they wereFor notmore wearing masks while 20 – 23, Baltimore, Maryland. they on treated poisoned children. In a recent information the severely meeting, Detroit poisoning, the first responders did not have visit www.aapmr.org. carbon monoxide detectors and also might have been poisoned. CO was not determined to be the cause for 20 to 30 minutes. November

Experience You Can Trust in Brain Injury Law

10.

http://www.corboydemetrio.com/news-121.html Source: “This paper was presented at the Proceedings of the 1st 8 –11: 99th ACRM Annual Conference, Annual Conference on

November 8 – 11, Chicago, IL. For more 11. Environmental Toxicology, sponsored by the SysteMed information, visit www.acrm.org. Corporation and held m Fairborn, Ohio on 9, 10th and 11 September 1970.“

2023

ABOUT THE AUTHOR Gordon Johnson is a leading attorney, advocate March

With over 30 years of experience in the area of head and brain injuries, nationally recognized Stark & Stark attorney Bruce H. Stern devotes himself to obtaining the compensation his injured clients deserve and to providing them with personal guidance to coordinate and promote the healing process.

Bruce H. Stern, Esq. bstern@stark-stark.com

and author on brain injury. He is a 1979 cum

graduate of the University 29 –laude 1: 14th IBIA World Congress on of Wisconsin school and 29 a journalism grad from NorthBrainlaw Injury, March – April 1, 2023, western Centre University. He hasIreland. authored Convention in Dublin, Forsome of the read web visit pages in brain injury. He is the moremost information, Past Chair of the Traumatic Brain Injury Litiwww.internationalbrain.org. gation Group, American Association of Justice. He was appointed by Wisconsin’s Governor to the state’s sub-agency, the TBI Task Force from 2002 – 2005. He is also the author of two novels on brain injury, Crashing Minds and Concussion is Forever.

www.StarkInjuryGroup.com www.BrainInjuryLawBlog.com 1-800-53-LEGAL Follow Us: 993 Lenox Drive, Lawrenceville, NJ 08648

BRAIN INJURY professional 19

Considerations in the Evaluation of Spanish-speaking Children After Brain Injury Paula Karina Pérez, PsyD, LMHC

Brain injury remains a growing leading cause of death and disability in children1 which can result in altered cognitive, language and socio-emotional development. Recent research has shown that Hispanics are at increased risk for brain injury.23 Particularly, Hispanic children have been found to display higher rates of brain injuryrelated hospitalizations and deaths compared to other racial/ethnic groups.3,4 Moreover, when compared to their non-Hispanic White counterparts, children of Hispanic origin are more prone to have more severe injuries and to exhibit significant long-term post-injury inequalities, evidenced by lower quality of life, level of participation in social activities, communication, and self-care abilities.5

These inequalities are exemplified in the scarcity of research regarding cognitive, behavioral and psychosocial assessment tools for bilingual children with neurological conditions that persists in the U.S. In the context of cognitive assessment of Hispanic individuals, it is worth noting that most neuropsychological measures developed in the U.S. are deemed to lack satisfactory diagnostic accuracy when used among culturally diverse individuals.7,8 Thus, neuropsychologists are left with the ethical duty of providing the best possible care by selecting measures from an extremely limited pool of normative data available for this population, which has often resulted in the use of foreign norms.

With over 60 million Hispanics, including over 20 million children, living in the U.S.6 and the high rates of brain-related injuries among this minority group, neuropsychologists and rehabilitation professionals will likely continue to see an increasing number of Spanish-speaking children referred for neuropsychological evaluation and treatment after brain injury. For this reason, professionals in this field should be prepared to provide culturally appropriate neuropsychological services to this population.

While some cognitive measures have been successfully normed for use with South and Central American children,9 these normative studies were conducted with children of very distinctive sociodemographic characteristics (e.g., variable socio-economic status, generally monolingual, non-injured). Consequently, to ensure valid results and accurate interpretation, neuropsychologists are strongly advised to refrain from using foreign norms when evaluating bilingual children in the U.S., all the more so after brain injury.

Although there have been commendable efforts to improve the standard level of neuropsychological care for Hispanics in the U.S. in recent years (e.g., development of bilingual measures, promoting cultural diversity among faculty and trainees, cultural competence education and training), health disparities among Hispanics remain a salient obstacle that underlies neuropsychological assessment and treatment of brain injury outcomes in this population.

This unofficial but widely accepted standard practice of care is consistent with the American Psychological Association (APA)’s Ethics Code on the Use of Assessments10 and has been implemented by a large number of Hispanic and non-Hispanic neuropsychologists in clinical practice across the U.S. Such consensus also acknowledges the marked heterogeneity among the Hispanic culture inside and outside the U.S., including significant differences in language development and use, quality of education, level of acculturation and assimilation and socioeconomic status.

20 BRAIN INJURY professional

Still, one question remains to be answered: How to best assess and serve bilingual Hispanic children in the U.S., particularly following potentially life-changing events such as a brain injury? The answer is not always straight-forward and encompasses a myriad of theorical and practical considerations. When evaluating Spanish-speaking children with brain injury, assessment is largely dictated by a multitude of equally important factors beyond the measures used for testing including the child’s age, age at injury, injury severity, course of development, comorbidities, socio-economic status, family organization, and psychosocial factors. Depending on the age, there are also important differences in the role of language when evaluating a child’s communication ability after brain injury, some of which are discussed below.

Universal Considerations Hispanics face considerable barriers including underinsurance, low socioeconomic status, and limited parental education11 which could result in substandard outcomes and delayed participation in treatment.12 One notable barrier for these families, particularly recent immigrants, is limited English proficiency. Given that a major component of the evaluation of Spanish-speaking children with any cognitive difficulty involves gathering detailed information about their premorbid functioning during the initial interview with parents or caregivers, monolingual Spanish-speaking families may find it challenging to recognize the significance, benefits, and implications of neuropsychological testing of children after brain injury. Thus, these families will benefit from interactions with professionals who are fluent in Spanish and are cognizant of the vast number of ways in which Hispanic-origin groups differ. Whenever possible, professionals are advised to refer to bilingual practitioners who have received ample training in the examination of culturally and linguistically diverse patients, as interpreter use can influence scores for some common neuropsychological tests, with greater impact on verbally-mediated tasks.13 When bilingual professionals are not available to communicate with the families and conduct evaluations in Spanish, the use of interpreters for neuropsychological test administration is widely accepted as an alternate way to ensure access to neuropsychological services. However, clinicians are encouraged to become familiar with bestpractice approaches in the use of interpreters. Although some considerations are universal and certainly pertinent for all Spanish-speaking children irrespective of age, some considerations may be more relevant to a particularly age-range and are further divided into two main age ranges: infant/toddlers/young children and older children/adolescents.

Infants, toddlers and young children Different levels of acculturation characterize the Hispanic culture in the U.S. resulting in a wide-ranging degree of Spanish language use among children and families. When carrying out brain injury evaluations, one of the very first steps is to identify the child’s primary language. This becomes particularly important during the early years given that speech is the primary mode for a child to express meaning and demonstrate level of cognitive functioning once verbal skills emerge.14

In light of this, here are some important questions to consider: • What is the primary caregiver’s primary language? • What language was the child first exposed to? • Is more than one language spoken at home? • Do the parents speak the same language at home? • Is there consistency in the language used by each parent? • Is the child exposed to other caregivers who may speak a different language? In the case of bilingual children, in addition to establishing the child’s primary language, examiners ought to consider the different types of bilingual language development. According to Mushi15, bilingual language acquisition can be circumstantial (e.g., for fun or temporary relocation), simultaneous acquisition (e.g., Spanish/ English exposure since birth) and sequential/successive (e.g., one language learned first, followed by learning a second and/or third language later). This category would include very young children whose primary language at home is Spanish, or those who may have only been exposed to Spanish at home since birth, and who might be receiving pre-academic instruction in an English setting. Cognitive ability in infants and toddlers (0-3) after brain injury is commonly assessed through clinical measures designed for early detection of developmental problems (e.g., BSID-4)16 ideally as part of a comprehensive evaluation by a multidisciplinary team comprised of neurologists, developmental pediatricians, speech and language pathologists, occupational and physical therapists. Since spoken language demands are still small during these first years of life, special attention is placed on performance in cognitive, motorbased and non-verbal communication tasks. Given what we know about the neurotraumatic pathological differences of brain injury of this age group, which can evidence distinctive posttraumatic responses to external damaging factors17, it is important to use assessment tools with high reliability and validity in identifying impairment after brain injury in this population, particularly measures that take into account linguistic differences. Although recent versions of various assessment measures have aimed to align their normative sample with the latest U.S. census data to include children from culturally and linguistically diverse backgrounds, caution is urged when interpreting English-normed tests with this population, particularly of measures or tasks with substantial verbal load, as children in this age range whose primary language at home is Spanish have demonstrated significantly lower language scores when compared to children whose primary language is English, even after adjusting for medical and socioeconomic variables.18 Instead, when assessing communication skills in Hispanic children in this age range after brain injury, it is recommended to place equal emphasis on the child’s basic language skills (e.g., babbling, cooing, etc.) as well as non-verbal skills including their ability to attend to speech, react and respond to name and other auditory stimuli from the environment and social relatedness. Often, some sequential/successive bilingual young children might demonstrate increased language comprehension in Spanish as their verbal skills begin to emerge. As language further develops and English exposure increases through pre-academic placement and increased opportunity for social interaction, their vocabulary and overall expressive language skills in English are expected to take off. Thus, differences in receptive and expressive language functioning post injury at this age should be carefully assessed and interpreted.

BRAIN INJURY professional 21

In light of this, some questions to consider when evaluating children in this age range include: • Does the child have language dominance? • Has there been regression/loss of language skills? • Given the lower verbal demand at this age, children can often demonstrate changes in cognitive functioning through greater motor difficulties or delay. Have these skills remained intact? • Have there been changes in other developmental domains? (e.g., social, emotional, behavioral) • Could any of the observed changes or deficits be explained by another medical or developmental comorbidity?

•

Older children and adolescents Language is a fundamental aspect of the neuropsychological evaluation. Once the child begins to use spoken language consistently as the primary method of communication, using culturally appropriate measures that adequately assess the child’s verbal functioning becomes paramount in identifying the overall impact of brain injury. Linguistic differences at this age raise important questions about how neuropsychologists test bilingual children in the U.S. As previously mentioned, it has become common for neuropsychologists to use translated and adapted tests when assessing Spanish speakers in the absence of sound pediatric bilingual norms. Using translated tests originally normed for monolingual English speakers is problematic for many reasons, some of which have been already described in an earlier article in this issue. It also does not account for grammatical differences across both languages that have no equivalency, such as letters that only exists in the Spanish alphabet (i.e., “ñ”, “ll”)19, or similar English translation for different Spanish verbs (e.g., “querer” vs “amar”) which changes the entire meaning of a phrase. These linguistic differences can often lead to misdiagnosis. For instance, Salinas et al.20 suggests that bilingual children are at risk for being mis-labeled when: 1) they are over-identified and placed in special education due to weak English proficiency impacting academic progress or 2) they are under-identified for special education as language disorder symptoms get masked for challenges with bilingualism. Similarly, Cardenas et al21 reported on the case of an 11-year-old native Spanish speaker boy who was incorrectly labeled as intellectually disabled following administration of an intellectual measure normed for English speakers as part of an inpatient evaluation. Considering these very distinctive linguistic and cultural differences, the following considerations when evaluating older Spanish-speaking children and adolescents are discussed. • When possible, examiners should establish language dominance and assess language proficiency beyond conversation through dual (Spanish-English) administration of objective measures (e.g., WJ-IV Test of Oral Language)22 • Given that cognitive academic language proficiency generally takes longer to develop compared with conversational proficiency21, children with limited English proficiency (LEP) may be at a disadvantage when tested in English. For this reason, the evaluation of bilingual children in the U.S. should be conducted in both languages, when possible. Moreover, children who are Spanish native speakers and who received some schooling in Spanish should be assessed in their firstacquired language.23

22 BRAIN INJURY professional

•

When English and Spanish are equally dominant, establishing language proficiency prior to testing becomes paramount and the examination should be completed in the child’s most proficient language. Bilingual children may often code-switch during conversation, resorting to the language that best fits the situation and in which they feel more comfortable. Some bilingual children and teens may use Spanish with family members or in social situations, while English remains the primary language used in academic or work-related activities. Ideally, these children and adolescents should be tested in both languages, particularly to clarify and differentiate children struggling with acquisition of a second language from those who may meet criteria for a language disorder.20 Certain expressions or words may be only be appropriate or have meaningful use in one setting, possibly resulting in reduced/increased vocabulary or language use in one language versus the other. In fact, early bilingual speakers are frequently found to develop less vocabulary knowledge compared to monolingual speakers, even in their dominant language 24,25,26 This finding has been further highlighted by Rivera-Mindt et al27 who has expanded on the connection between frequency of language use and lexical accessibility, referring to the premise that bilinguals are exposed less frequently to each language when compared to monolinguals by virtue of speaking each language less. When the focus of the evaluation is not related to language functioning or establishing language proficiency, Spanishspeaking children should be given credit for their answers in both languages. In these situations, professionals might find it helpful to keep separate scores for answers in both languages in order to compare performance across tasks of high language demand.

Healthcare disparities among Hispanics: Am I competent to provide these services? The growth rate of Hispanics over the last decades has undoubtedly contributed to inequities in the access of culturally appropriate neuropsychological care. However, these inequities are also the product of limited education and training opportunities for culturally-diverse professionals in the field. As healthcare disparities among Hispanics continue to color how neuropsychological services for Hispanics are rendered, professionals are encouraged to explore their own development as culturally competent healthcare providers. That is, the same heterogeneity of cultural and linguistic differences found in the Hispanic patient population is also found in the small percentage of neuropsychologists of Hispanic background in the U.S. These cultural differences among Hispanics are also reflected in the variable frequency of language use, level of proficiency, cultural self-identification, level of acculturation and other important cultural characteristics of Hispanic neuropsychologists in the U.S. It is clear that a “one size fits all” approach when assessing Hispanic individuals, particularly children, does not always guarantee culturally appropriate care. Consequently, professionals are invited to increase awareness of possible linguistic limitations in the Spanish language and recognize any limitations when providing services to this population. Some relevant questions for professionals before examining Spanishspeaking or bilingual children include: • Awareness of one’s linguistic limitations in the Spanish Language

•

• Do I understand Spanish more than I can speak it? • Can I read and write it proficiently? • Have I received formal education in Spanish? • Will I be able to distinguish between Spanish dialects? Training barriers • Have I received prior training in neuropsychological testing in Spanish? • Have I received adequate supervision on these cases? • Has my training curriculum encouraged cultural competence?

It is important to highlight that culturally sensitive supervision is not only about having a bilingual supervisor. Rather, it involves supervision that acknowledges the cultural differences across groups and takes those differences into account when formulating impressions. Ideally, cultural competency should encompass the professional’s level of Spanish proficiency as well as their familiarity with other important aspects of the child’s environment including characteristics of their development in the context of their cultural background. Some questions for professionals to explore include: • Cultural background • Am I familiar with the child’s specific cultural background? • Am I aware of the barriers to healthcare access of this particular group? • Level of exposure to services for Hispanics with brain injury • How do individuals from this group perceive injury? • What is the group’s level of trust in clinical and medical personnel? • Do I understand the brain injury-related needs of this population in the context of their cultural background? • Familiarity with Hispanic children’s development • Am I familiar with bilingual language development? • Do I feel comfortable administering tests in Spanish? • Are there early development normative differences that should be considered when interpreting results for this population? In the words of Manly28, neuropsychologists have been “playing a game of catch-up” in providing adequate care to culturallydiverse individuals in the U.S. in the last decades. The field of neuropsychology has certainly made noteworthy advances in the last decade to increase the availability and improve the quality of neuropsychological services for Hispanic children. Also, broader understanding of brain injury at a young age and the intersection of bilingualism and cognition after brain insult have opened up doors to expand services to these children. Still, efforts from all spheres within the field are necessary to continue our path towards closing the gaps in healthcare disparities and achieving neuropsychological equity for culturally-diverse individuals with brain injury in the U.S. References 1.

Dewan MC, Mummareddy N, Wellons JC, Bonfield CM. Epidemiology of Global Pediatric Traumatic Brain Injury: Qualitative Review. World Neurosurg. 2016;91:497-509.e1. doi:10.1016/j. wneu.2016.03.045

Arango-Lasprilla JC, Kreutzer JS. Racial and Ethnic Disparities in Functional, Psychosocial, and Neurobehavioral Outcomes After Brain Injury. J Head Trauma Rehabil. 2010;25(2):128-136. doi:10.1097/HTR.0b013e3181d36ca3

Daugherty J, Waltzman D, Sarmiento K, Xu L. Traumatic Brain Injury-Related Deaths by Race/Ethnicity, Sex, Intent, and Mechanism of Injury - United States, 2000-2017. MMWR Morb Mortal Wkly Rep. 2019;68(46):1050-1056. doi:10.15585/mmwr.mm6846a2

Peterson AB, Sarmiento K, Xu L, Haileyesus T. Traumatic brain injury-related hospitalizations and deaths among American Indians and Alaska natives - United States, 2008-2014. J Safety Res. 2019;71:315-318. doi:10.1016/j.jsr.2019.09.017

Jimenez N, Ebel BE, Wang J, et al. Disparities in disability after traumatic brain injury among Hispanic children and adolescents. Pediatrics. 2013;131(6):e1850-1856. doi:10.1542/peds.2012-3354

Current Population Survey, Annual Social and Economic Supplement 2019. U.S. Census Bureau. Published 2019. https://www.census.gov/data/tables/2019/demo/hispanic-origin/2019-cps.html

Ardila A, Rodriguez-Menendez, G, Rosselli M. Current issues in neuropsychological assessment with Hispanics/Latinos. In: Ferraro FR, ed. Minority and Cross-Cultural Aspects of Neuropsychological Assessment. Swets & Zeitlinger; 2002:161-179. Accessed September 26, 2021. http://search. ebscohost.com/login.aspx?direct=true&scope=site&db=nlebk&db=nlabk&AN=1028854

Brickman AM, Cabo R, Manly JJ. Ethical issues in cross-cultural neuropsychology. Appl Neuropsychol. 2006;13(2):91-100. doi:10.1207/s15324826an1302_4

Arango-Lasprilla JC, Rivera D. Normative data for Spanish-language neuropsychological tests: A step forward in the assessment of pediatric populations. Arango-Lasprilla JC, Rivera D, eds. NeuroRehabilitation. 2017;41(3):577-580. doi:10.3233/NRE-001479

10.

American Psychological Association. Ethical Principles of Psychologists and Code of Conduct. Am Psychol. 2002;57(12):1060-1073. doi:10.1037/0003-066X.57.12.1060

11.

Doria, Nancy, Jimenez, Natalia, Pappdis Monique R. Pediatric TBI Among Underrepresented Ethnic Groups. Brain Injury Association. Published 2021. https://www.biausa.org/public-affairs/media/ pediatric-tbi-among-underrepresented-ethnic-groups

12.

Moore M, Jimenez N, Rowhani-Rahbar A, et al. Availability of Outpatient Rehabilitation Services for Children After Traumatic Brain Injury: Differences by Language and Insurance Status. Am J Phys Med Rehabil. 2016;95(3):204-213. doi:10.1097/PHM.0000000000000362

13.

Casas R, Guzmán-Vélez E, Cardona-Rodriguez J, et al. Interpreter-Mediated Neuropsychological Testing of Monolingual Spanish Speakers. Clin Neuropsychol. 2012;26(1):88-101. doi:10.1080/13854 046.2011.640641

14.

Mushi S. Multiple Languages and the School Curriculum: Experiences from Tanzania. Institute of Education Sciences. Published 2012. https://eric.ed.gov/?id=ED537709

15.

Mushi S. Simultaneous and Successive Second Language Learning: Integral Ingredients of the Human Development Process. Early Child Dev Care. 2002;172(4):349-358. doi:10.1080/03004430212717

16.

Bayley N, Aylward G. Bayley Scales of Infant and Toddler Development-Fourth Edition. Pearson Assessments. Published 2021. https://www.pearsonassessments.com/store/usassessments/ en/Store/Professional-Assessments/Cognition-%26-Neuro/Bayley-Scales-of-Infant-and-ToddlerDevelopment-%7C-Fourth-Edition/p/100001996.html

17.

Ciurea AV, Gorgan MR, Tascu A, Sandu AM, Rizea RE. Traumatic brain injury in infants and toddlers, 0-3 years old. J Med Life. 2011;4(3):234-243.

18.

Lowe JR, Nolen TL, Vohr B, Adams-Chapman I, Duncan AF, Watterberg K. Effect of primary language on developmental testing in children born extremely preterm. Acta Paediatr. 2013;102(9):896-900. doi:10.1111/apa.12310

19.

20.

Salinas C, Borders-Edgar V, Puente A. Barriers and Practical Approaches to Neuropsychological Assessment of Spanish Speakers. In: Ferraro FR, ed. Minority and Cross-Cultural Aspects of Neuropsychological Assessment: Enduring and Emerging Trends. Second edition. T aylor & Francis; 2015:228-258.

21.

Cardenas A, Villavicencio L, Pavuluri M. Considerations in the Neuropsychological Evaluation and Treatment of Children with Limited English Proficiency. Perm J. 2017;21(3). doi:10.7812/TPP/16-149

22.

Test of Oral Language. Woodcock Johnson Fourth Edition. Published 2021. https://www.riversideassessments.com/copy-of-wj-iv-tests-of-oral-languag

23.

Lopez EC, Lamar D, Scully-Demartini D. The Cognitive Assessment of Limited-English-Proficient Children: Current Problems and Practical Recommendations. Cult Divers Ment Health. 1997;3(2):117130. doi:10.1037/1099-9809.3.2.117

24.

Portocarrero J, Burright R, Donovick P. Vocabulary and verbal fluency of bilingual and monolingual college students. Arch Clin Neuropsychol. 2007;22(3):415-422. doi:10.1016/j.acn.2007.01.015

25.

Bialystok E, Luk G, Peets KF, Yang S. Receptive vocabulary differences in monolingual and bilingual children. Biling Lang Cogn. 2010;13(4):525-531. doi:10.1017/S1366728909990423

26.

Bialystok E, Luk G. Receptive vocabulary differences in monolingual and bilingual adults. Biling Lang Cogn. 2012;15(2):397-401. doi:10.1017/S136672891100040X

27.

Rivera Mindt M, Byrd D, Saez P, Manly J. Increasing culturally competent neuropsychological services for ethnic minority populations: a call to action. Clin Neuropsychol. 2010;24(3):429-453. doi:10.1080/13854040903058960

28.

Manly JJ. Critical issues in cultural neuropsychology: profit from diversity. Neuropsychol Rev. 2008;18(3):179-183. doi:10.1007/s11065-008-9068-8

Author Bio Paula Karina Pérez, PsyD, LMHC. completed her undergraduate studies at Florida International University. She holds two master’s degrees in clinical psychology and mental health. She later completed her doctoral studies in clinical psychology with concentration in neuropsychology at Albizu University. She completed a pediatric psychology pre-doctoral residency at Children’s Minnesota Hospital and a two-year postdoctoral fellowship in pediatric neuropsychology and neurorehabilitation at New York University – Langone Health/ Rusk Rehabilitation. Dr. Pérez currently serves as a pediatric neuropsychologist and associate professor of pediatrics at the University of Miami/Miller School of Medicine Mailman Center for Child Development. She has published articles in different high impact international journals, co-authored book chapters on pediatric TBI and multicultural neuropsychology, and has been a speaker at different national and international conferences. Dr. Pérez’s research interests include pediatric TBI, neurorehabilitation and multicultural neuropsychology.

BRAIN INJURY professional 23

Cognitive Rehabilitation for Spanish-speakers with Brain Injury in the United States Denise Krch, PhD • Anthony H. Lequerica, PhD

Disparities in Traumatic Brain Injury

Cognitive Rehabilitation for Spanish Speakers

Ethnic disparities have been documented in traumatic brain injury (TBI). The incidence of TBI among Hispanics is significantly greater than that within Non-Hispanic Whites (NHW).1 In a recent study using the Ohio State University Traumatic Brain Injury Identification Method, 25% of the sample, which comprised over 700 Spanishspeakers from Latin America, Spain, and the U.S., reported a lifetime history of TBI with loss of consciousness.2 This statistic contrasts with meta-analyses which place general population prevalence at around 12.1% within developed countries.3 Access to rehabilitation for TBI is disproportionate as well. Minorities, including Hispanics, receive fewer and less intensive rehabilitation services,4,5 and are more likely to be discharged home versus to inpatient rehabilitation compared to NHW.6

Given the significant number of Hispanics in the U.S. and their disproportionately higher prevalence of TBI and poorer rehabilitation outcomes, there is a compelling need for appropriate treatments for this population. However, the field of Spanish cognitive rehabilitation is nascent and studies establishing the efficacy of interventions are difficult to find in the literature. For comparison, a meta-analysis of Spanish cognitive rehabilitation treatments in neurologic disorders published in 201210 evaluated 24 studies, whereas systematic reviews of English cognitive rehabilitation treatments in TBI and stroke published up until 201111 had evaluated a total of 370 articles (with a more recent 2019 publication having evaluated a cumulative 491 articles12). Nonetheless, the extant literature on cognitive rehabilitation studies in Spanish-speakers is promising, and thus, may be used as a guide for cognitive rehabilitation programs in the U.S. The 2012 metaanalysis indicated that approximately 58.3% of the studies to date had focused on retraining strategies, 33.3% targeted compensatory systems, and 8.3% used a combination of both.10 Further, a trend was noted showing increasing effect sizes for interventions on quality of life in more recent years, suggesting progress.

According to various mortality studies, outcomes after TBI are disproportionately worse for Spanish-speaking Hispanics relative to NHW 1,7. For example, research demonstrated that Hispanic patients were five times more likely to live with severe disabilities than NHW, and that Spanish-speaking Hispanics were 15 times more likely to live with a severe disability six months post-injury relative to NHW 8 . A lack of access to rehabilitation in one’s native language may be a primary contributing factor to disparities.9 Additionally, culture, education, and other social determinants may interact with language in complex ways to influence outcomes.

24 BRAIN INJURY professional

Some studies have evaluated strategy-based techniques to improve recall among Spanish-speaking individuals.

For example, the effect of self-generation on learning and memory among Spanish speakers with TBI has been shown regardless of the level of TBI severity or cognitive impairment.13 This suggests that the incorporation of self-generation into cognitive rehabilitation programs may prove beneficial. Another strategy-based treatment that has shown strong efficacy in English-speakers with TBI 14 and preliminary efficacy in Spanish-speakers with MS, is the modified Story Memory Technique (mSMT). The mSMT is a 10-session intervention that teaches imagery and context to facilitate learning. Pilot research conducted in Mexico showed that Spanish-speakers with MS and impaired learning who received the mSMT improved on objective measures of learning and memory and patients and their families reported increased life satisfaction and everyday functioning relative to a placebo control group.15 Class I evidence in TBI in English and preliminary efficacy in Spanish in MS suggests the mSMT may be a promising treatment option for Spanish-speakers with TBI, although further research would be needed to confirm this. Still other studies incorporate strategy-based techniques into their treatment approaches with good success. In one such study, a mixed sample of individuals with various neurologic conditions, including TBI, reported improved quality of life, subjective memory, and mood after 14 weeks of treatment.16 Although this study was limited by a lack of control condition and objective outcome measures, it importantly placed a focus on the patients’ perspective of benefit or clinical significance, which is often an omission in efficacy research. Together, the findings from strategy-based cognitive rehabilitation treatments in Spanish reflect the recommendation for use of these approaches in treatment of memory deficits after brain injury in English-speakers.12 The growing body of Spanish cognitive rehabilitation literature has also begun evaluating language treatments in brain injury. Triviño and colleagues investigated a treatment specifically targeting confabulations after acquired and traumatic brain injury.17 They found a significant decrease in confabulations and significant improvement on objective cognitive measures in the experimental group relative to the wait-list control group. Case control and case studies using varying treatment approaches have additionally demonstrated improvements in language deficits in individuals after stroke and TBI.18,19 While positive findings in these smaller studies are encouraging, more research is needed to confirm efficacy. In recent years, there has been a growing trend toward development of computerized cognitive rehabilitation programs. These programs fall into two categories, namely those that are designed to be administered to patients under the guidance of a trained clinician, and those that commercially available to the general public as brain training. GRADIOR, the Guttman NeuroPersonal Trainer, and NeuronUP are examples of clinician-guided treatments. GRADIOR was developed in the late 90s and contains over 12,000 exercises designed to be used in evaluation and treatment of patients with a wide array of conditions. It has been used in clinical practice in more than 500 clinical and social settings in Spain, serving over 11,000 patients. Its usability, feasibility, and preliminary effectiveness have been reported in mild cognitive impairment and early dementia and a larger trial is now underway.20 The Guttman NeuroPersonal Trainer (GNPT) consists of 95 different tasks addressing attention, memory and executive function domains.21 The GNPT has been integrated into clinical routine in several rehabilitation centers in Spain serving a mixed patient population, which includes TBI and stroke. To date, over 1600 patients have been treated using this protocol, and usability and cost analysis have been quite favorable. Future research is still required to establish efficacy. NeuronUP is a more recently developed program that contains over 10,000 activities and is designed for a wide range of patient populations.

No studies have been conducted in TBI to date, however, various studies are underway in various patient populations including acquired brain injury. Several brain training programs are available commercially in Spanish (e.g., BrainHQ, Lumosity, Rehacom), with some tested in acquired and traumatic brain injury in Spanish and other languages.22,23 Such tools are particularly attractive as they can be implemented in rural locations where accessibility or transportation is a barrier to treatment. However, while brain trainings have shown feasibility and acceptability; many studies demonstrate a lack of evidence to support effectiveness on subjective or objective cognition.24 This underlines guidance from a large-scale systematic review of the English cognitive rehabilitation literature, citing that computer-based interventions should be an adjunct to clinician-guided treatment and sole reliance on computer-based tasks without some involvement and intervention by a clinician is not recommended.12 There are cognitive rehabilitation treatments that have shown efficacy in other patient populations with neurologic compromise that could potentially be adopted for a TBI population. One of particular interest is the REHACOP, an integrative cognitive rehabilitation program, comprised of more than 300 paper-andpencil tasks. The REHACOP, developed in Spain, was initially established as efficacious in the schizophrenia population, but later research extended efficacy to MS and Parkinson’s disease. It is administered by a trained rehabilitation professional and can delivered in individuals or group format. As the protocol broadly covers the major domains of cognition, it would be applicable to the impairments common in TBI.25

BRAIN INJURY professional 25

Although additional research is needed to test the generalizability of the findings to the larger population of Spanish speakers across the U.S., these studies make important contributions to the literature that can provide a foundation for developing effective cognitive rehabilitation interventions and studies that further our understanding of the underlying mechanisms of action. As more studies become published, it may be feasible to use combinations of treatments studied in different populations that have commonalities across multiple cohorts of Spanish speakers. Establishing this type of generalizability is an attractive alternative to having separate treatment protocols based on country of origin or patient population. In any case, a balance should be sought taking into account generalizability while being mindful of the individuality of the patient in the interest of patient-centered care.

Conclusions In light of the vast number of Hispanics with TBI in the U.S. in need of cognitive rehabilitation services and limited number of evidencebased options available in Spanish, it is a substantial challenge to provide appropriate services to this population. Nonetheless, there is a growing body of literature evidencing promising results. Indeed, the Spanish neuropsychological landscape today is vastly different from even a decade ago when virtually no formalized treatment options existed. Further, although many of the Spanish treatments that exist have not yet been tested specifically in TBI, their established efficacy in other populations bodes well for a crosswalk to TBI, where overlap of cognitive impairments may be shared. Certainly, the field will call for researchers to continue establishing an evidence-base in TBI. There is also a dire need of clinicians in the U.S. who can provide services in Spanish and research to develop efficacious methods of treatment delivery through an interpreter where Spanish-speaking clinicians are unavailable. With the currently available resources, we can begin to form a basic framework for serving the diverse Hispanic culture in the U.S. and abroad to improve quality of life after brain injury. References 1.

Bruns J, Jr., Hauser WA. The epidemiology of traumatic brain injury: a review. Epilepsia. 2003;44 Suppl 10:2-10.

Lequerica AH, Botticello A, O'Neill J, et al. Relationship Between Hispanic Nativity, Residential Environment, and Productive Activity Among Individuals With Traumatic Brain Injury: A TBI Model Systems Study. J Head Trauma Rehabil. 2019;34(1):E46-E54.

Frost RB, Farrer TJ, Primosch M, Hedges DW. Prevalence of traumatic brain injury in the general adult population: a meta-analysis. Neuroepidemiology. 2013;40(3):154-159.

Meagher AD, Beadles CA, Doorey J, Charles AG. Racial and ethnic disparities in discharge to rehabilitation following traumatic brain injury. J Neurosurg. 2015;122(3):595-601.

Burnett DM, Kolakowsky-Hayner SA, Slater D, et al. Ethnographic analysis of Traumatic Brain Injury patients in the National Model Systems Database. Arch Phys Med Rehabil. 2003;84:263-267.

26 BRAIN INJURY professional

Asemota AO, George P, Cumpsty-Fowler CJ, Haider AH, Schneider EB. Race and insurance disparities in discharge to rehabilitation for patients with traumatic brain injury. J Neurotrauma. 2013;30:20572065.

Egede LE, Dismuke C, Echols C. Racial/Ethnic disparities in mortality risk among US veterans with traumatic brain injury. Am J Public Health. 2012;102 Suppl 2:S266-271.

Marquez de la Plata C, Hewlitt M, de Oliveira A, et al. Ethnic differences in rehabilitation placement and outcome after TBI. J Head Trauma Rehabil. 2007;22(2):113-121.

Baker JG, Fiedler RC, Ottenbacher KJ, Czyrny JJ, Heinemann AW. Predicting follow-up functional outcomes in outpatient rehabilitation. Am J Phys Med Rehabil. 1998;77(3):202-212.

10.

Guardia-Olmos J, Jarne Esparcia A, Urzua Morales A, Gudayol Ferre E. Neuropsychological rehabilitation and quality of life in patients with cognitive impairments: a meta-analysis study in Spanish-speaking populations. NeuroRehabilitation. 2012;30(1):35-42.

11.

Cicerone KD, Langenbahn DM, Braden C, et al. Evidence-based cognitive rehabilitation: updated review of the literature from 2003 through 2008. Arch Phys Med Rehabil. 2011;92(4):519-530.

12.

Cicerone KD, Goldin Y, Ganci K, et al. Evidence-Based Cognitive Rehabilitation: Systematic Review of the Literature From 2009 Through 2014. Arch Phys Med Rehabil. 2019;100(8):1515-1533.

13.

De los Reyes Aragon CJ, Arango-Lasprilla JC, Perea Bartolome M, Ladera Fernandez V, Krch D. The effect of cognitive impairment on self-generation in Hispanics with TBI. NeuroRehabilitation. 2012;30(1):55-64.

14.

Chiaravalloti ND, Sandry J, Moore NB, DeLuca J. An RCT to Treat Learning Impairment in Traumatic Brain Injury: The TBI-MEM Trial. Neurorehabil Neural Repair. 2015.

15.

Krch D, Lequerica A, Aguayo Arelis A, Rabago Barajas BV, Arango-Lasprilla JC, Chiaravalloti ND. Efficacy of the Spanish modified Story Memory Technique in Mexicans with multiple sclerosis: A pilot randomized controlled trial. NeuroRehabilitation. 2019;45(3):349-358.

16.

Saux G, Demey I, Rojas G, Feldberg C. Cognitive rehabilitation therapy after acquired brain injury in Argentina: psychosocial outcomes in connection with the time elapsed before treatment initiation. Brain Inj. 2014;28(11):1447-1454.

17.

Triviño M, Ródenas E, Lupiáñez J, Arnedo M. Effectiveness of a neuropsychological treatment for confabulations after brain injury: A clinical trial with theoretical implications. PLoS ONE. 2017(3).

18.

Solovieva Y, Quintanar L. Rehabilitation of semantic aphasia in a spanish-speaking patient. Psychology in Russia: State of the Art. 2018;11(1):137-150.

19.

Berthier ML, Edelkraut L, Mohr B, et al. Intensive aphasia therapy improves low mood in fluent poststroke aphasia: Evidence from a case-controlled study. Neuropsychol Rehabil. 2020:1-16.

20.

Franco-Martin MA, Diaz-Baquero AA, Bueno-Aguado Y, et al. Computer-based cognitive rehabilitation program GRADIOR for mild dementia and mild cognitive impairment: new features. BMC Med Inform Decis Mak. 2020;20(1):274.

21.

Solana J, Caceres C, Garcia-Molina A, et al. Improving brain injury cognitive rehabilitation by personalized telerehabilitation services: Guttmann neuropersonal trainer. IEEE J Biomed Health Inform. 2015;19(1):124-131.

22.

Fernandez E, Bergado Rosado JA, Rodriguez Perez D, Salazar Santana S, Torres Aguilar M, Bringas ML. Effectiveness of a Computer-Based Training Program of Attention and Memory in Patients with Acquired Brain Damage. Behav Sci (Basel). 2017;8(1).

23.

Chalabianloo GR, Ghorbanzadeh Bavil Oliyei R, Farhad M. The impact of cognitive rehabilitation with RehaCom software on attention improvement in patients with traumatic brain impairment. Advances in Cognitive Science. 2020;22(3):48-57.

24.

Nguyen L, Murphy K, Andrews G. A Game a Day Keeps Cognitive Decline Away? A Systematic Review and Meta-Analysis of Commercially-Available Brain Training Programs in Healthy and Cognitively Impaired Older Adults. Neuropsychol Rev. 2021.

25.

Gomez-Gastiasoro A, Pena J, Ibarretxe-Bilbao N, et al. A Neuropsychological Rehabilitation Program for Cognitive Impairment in Psychiatric and Neurological Conditions: A Review That Supports Its Efficacy. Behav Neurol. 2019;2019:4647134.

Author Bios Denise Krch, PhD, is a Senior Research Scientist at Kessler Foundation, an Assistant Research Professor in the Department of Physical medicine and Rehabilitation at Rutgers New Jersey Medical School, and a neuropsychologist, licensed in psychology in the state of New York. Dr. Krch conducts research on cognitive rehabilitation across neurologic populations, including TBI. A primary focus of her research is on the effectiveness of cognitive rehabilitation interventions across Hispanic cultures and the role of cultural factors on outcomes in TBI. Anthony H. Lequerica, PhD, is a Senior Research Scientist at Kessler Foundation’s Center for TBI Research and a Research Associate Professor at Rutgers – New Jersey Medical School in the Department of Physical Medicine and Rehabilitation. As Director of the Brain and Behavioral Outcomes Lab, his research focuses on cultural and sociodemographic factors affecting brain injury rehabilitation outcomes. He is Co-Chair of the Inclusion, Diversity, Equity, and Accessibility Special Interest Group within the Traumatic Brain Injury Model Systems sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. He is a Staff Neuropsychologist at Kessler Institute for Rehabilitation where he provides neuropsychological services to Spanish-speakers with a variety of neurological conditions. He has over 50 peer-reviewed publications and has given numerous presentations across the U.S. and abroad to researchers, health care professionals, and individuals with brain injury and their families.

SAVE THE DATE! September 21-24, 2022 New Yorker Hotel New York, New York

Canoeing at Vinland’s main campus in Loretto, Minnesota

drug & alcohol treatment for Medical adults 2022 Legalwith disabilities North American Brain Injury Society

Center provides drug and alcohol treatment for adults with Conference Vinland cognitive disabilities, including traumatic brain injury, fetal alcohol spectrum disorder and learning disabilities. We make all possible on Brain Injury accommodations for cognitive deficits and individual learning styles. Located in Loretto, Minnesota — just 20 miles west of Minneapolis.

www.internationalbrain.org

(763)479-3555 • VinlandCenter.org

Restore-Ragland

Restore-Roswell

Restore-Lilburn

Restore Neurobehavioral Center is a residential, post acute healthcare organization dedicated exclusively to serving adults with acquired brain injury who also present with moderate to severe behavioral problems. Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).

www.restorehealthgroup.com 800-437-7972 ext 8251 BRAIN INJURY PROFESSIONAL

BRAIN INJURY professional 27

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

28 BRAIN INJURY professional

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.

BRAIN INJURY professional 29

References

21.

Dewalt DA, Berkman ND, Sheridan S, Lohr KN, Pignone MP. Literacy and health outcomes: a systematic review of the literature. J Gen Intern Med. 2004;19(12):1228-1239.

U.S. Census Bureau PD. Annual Estimates of the Resident Population by Sex, Age, Race, and Hispanic Origin for the United States and States: April 1, 2010 to July 1, 2018 2019 [updated June 2019; cited 2019 November 19, 2019]. Retrieved from https://www.census.gov/quickfacts/fact/table/US/ PST045219.

22.

Wolf MS, Gazmararian JA, Baker DW. Health literacy and functional health status among older adults. Arch Intern Med. 2005;165(17):1946-1952.

23.

Nelson LD, Temkin NR, Dikmen S, et al. Recovery After Mild Traumatic Brain Injury in Patients Presenting to US Level I Trauma Centers: A Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI) Study [published correction appears in JAMA Neurol. 2019 Dec 1;76(12):1520]. JAMA Neurol. 2019;76(9):1049-1059.

Magasi S, Durkin E, Wolf MS, Deutsch A. Rehabilitation consumers' use and understanding of quality information: a health literacy perspective. Arch Phys Med Rehabil. 2009;90(2):206-212.

24.

Kutner M, Greenburg E, Jin Y, Paulsen C. The Health Literacy of America's Adults: Results from the 2003 National Assessment of Adult Literacy. NCES 2006-483. Washington, DC: National Center for Education Statistics; 2006 Sep.

Dismuke CE, Gebregziabher M, Yeager D, Egede LE. Racial/Ethnic Differences in Combat- and NonCombat-Associated Traumatic Brain Injury Severity in the Veterans Health Administration: 2004-2010. Am J Public Health. 2015;105(8):1696-1702.

Arango-Lasprilla JC, Ketchum JM, Drew A, et al. Neurobehavioural symptoms 1 year after traumatic brain injury: a preliminary study of the relationship between race/ethnicity and symptoms. Brain Inj. 2012;26(6):814-824. doi:10.3109/02699052.2012.655360

Arango-Lasprilla JC, Rosenthal M, Deluca J, et al. Traumatic brain injury and functional outcomes: Does minority status matter? Brain Inj. 2007;21(7):701-708.

Sander AM, Pappadis MR, Davis LC, et al. Relationship of race/ethnicity and income to community integration following traumatic brain injury: investigation in a non-rehabilitation trauma sample. NeuroRehabilitation. 2009;24(1):15-27.

Arango-Lasprilla JC, Ketchum JM, Lewis AN, Krch D, Gary KW, Dodd BA Jr. Racial and ethnic disparities in employment outcomes for persons with traumatic brain injury: a longitudinal investigation 1-5 years after injury. PM&R. 2011;3(12):1083-1091.

Asemota AO, George BP, Cumpsty-Fowler CJ, Haider AH, Schneider EB. Race and insurance disparities in discharge to rehabilitation for patients with traumatic brain injury. J Neurotrauma. 2013;30(24):2057-2065.

Meagher AD, Beadles CA, Doorey J, Charles AG. Racial and ethnic disparities in discharge to rehabilitation following traumatic brain injury. J Neurosurg. 2015;122(3):595-601.

10.

Budnick HC, Tyroch AH, Milan SA. Ethnic disparities in traumatic brain injury care referral in a Hispanic-majority population. J Surg Res. 2017;215:231-238.

11.

Krogstad JM, Stepler R, Lopez MH. English proficiency on the rise among Latinos. Pew Research Center. May 12, 2015. Accessed October 1, 2021. https://www.pewresearch.org/ hispanic/2015/05/12/english-proficiency-on-the-rise-among-latinos/

12.

Jamison L, Kolakowsky-Hayner SA, Wright J. Preliminary investigation of longitudinal sociodemographic, injury, and psychosocial characteristics in a group of non-English speaking Latinos with brain injury. Brain Inj. 2012;26(6):805-813.

13.

Sander AM, Ketchum JM, Lequerica AH, Pappadis MR, Bushnik T, Hammond FM, Sevigny M. Primary Language and Participation Outcomes in Hispanics With Traumatic Brain Injury: A Traumatic Brain Injury Model Systems Study. J Head Trauma Rehabil. 2021 Jul-Aug 01;36(4):E218-E225.

14.

Lequerica, AH, Botticello A, O'Neill J, et al. Relationship between Hispanic nativity, residential environment, and productive activity among individuals with traumatic brain injury: a TBI Model Systems study. J Head Trauma Rehabil. 2019; 34(1): E46-E54.

15.

Pappadis MR, Sander AM, Struchen MA, Kurtz DM. Soy diferente: a qualitative study on the perceptions of recovery following traumatic brain injury among Spanish-speaking U.S. immigrants. Disabil Rehabil. 2020 Oct 27:1-10.

16.

Ram P, Miah FT, Wyrick JM, Kalosza BA, Coritsidis GN. Outcomes in Critically Ill Patients With Traumatic Brain Injury: Ethnicity, Documentation, and Insurance Status. Crit Care Med. 2020;48(1):31-40.

17.

Pappadis MR, Sander AM, Struchen MA, Leung P, Smith DW. Common misconceptions about traumatic brain injury among ethnic minorities with TBI. J Head Trauma Rehabil. 2011;26(4):301-311.

18.

Pappadis MR, Sander AM, Łukaszewska B, Struchen MA, Leung P, Smith DW. Effectiveness of an Educational Intervention on Reducing Misconceptions Among Ethnic Minorities With Complicated Mild to Severe Traumatic Brain Injury. Arch Phys Med Rehabil. 2017;98(4):751-758.

19.

Selden CR, Zorn M, Ratzan SC, Parker RM. Health Literacy. Bethesda, MD: National Library of Medicine; 2000 Feb.

20.

Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155(2):97-107.

30 BRAIN INJURY professional

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

BRAIN INJURY professional 31

PHOTO BY HERMAN PRIVETTE

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

PHONE

44 BRAIN INJURY PROFESSIONAL

415.352.6264 | FAX 415.352.6265

www.scarlettlawgroup.com

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.

Brain Injury Professional: Brain Injury Among Spanish-Speaking Individuals

Articles inside

Guest Editor’s Message

Considerations in the Evaluation of Spanish-speaking Children After Brain Injury

Cognitive Rehabilitation for Spanish-speakers with Brain Injury in the United States

Acquired Brain Injury in Spain

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

An Overview of Traumatic Brain Injury Care in Latin America

Editor in Chief Message