Answered Questions: Monthly News for the Disability Community for March 2017

Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need.

What is a brain injury?
The Model Systems Knowledge Translation Center (MSKTC) (en inglés) (90DP0082) has a four part series on understanding traumatic brain injury (TBI) (en inglés). The series includes information on what happens during and in the early stages of recovery; the impact of brain injury on a person’s functioning; and the impact of TBI on family and how they can help. Each part of the series is available individually in Spanish.

The National Institute of Neurological Disorders and Stroke (NINDS) offers a great article that defines brain injury, the different types of brain injuries, their signs and symptoms, causes and risk factors, how brain injuries can affect consciousness, what types of medical treatments a person with a brain injury may receive, complications, what disabilities may result due to brain injury, rehabilitation, and how to prevent brain injuries. The article also includes a glossary and research being done at NINDS.

NIDILRR Projects:

The Traumatic Brain Injury Model Systems (TBIMS)  (en inglés) program financed by NIDILRR began in 1987 to improve care and outcome for people with TBI. Currently, there are 16 TBIMS centers across the United States and each provide a multidisciplinary system of rehabilitation care that includes emergency, acute, and post-acute medical services. The centers also build the national capacity for high quality treatment and research that serve people with TBI. As part of their work, each center researches a different aspect of TBI. For example, the Mayo Clinic Traumatic Brain Injury Model System (en inglés) includes a trial of a model of care, called CONNECT, that connects remotely people hospitalized with TBI, their families, and their local health care providers to specialists in neurological and cognitive rehabilitation; the South Florida Traumatic Brain Injury Model System (SF-TBIMS) (en inglés) is working on sleep disordered breathing in people with TBI and on evaluating the assessment methods for pain in people with TBI; and the North Texas Traumatic Brain Injury Model System (en inglés) is researching how TBI patients may benefit from pharmacological therapy. All TBIMS Centers contribute data to the TBIMS National Database.

The Traumatic Brain Injury Model Systems National Database (TBIMS National Database) (en  inglés) is the largest prospective, longitudinal, multicenter database in the United States and is representative of over 150,000 adults who have experienced TBIs severe enough that they required hospitalization and inpatient physical rehabilitation. The data included in this database is on preinjury, injury, acute care, rehabilitation, and outcomes at one, two, and five years post-injury. It also includes information on persons up to 25 years post-injury!

Factsheets:

Information/education page: Memory and traumatic brain injury (J57367). (En inglés). This informational/educational page provides information on some of the memory issues that people with TBI may experience. It also describes what they can do to work around these issues. Memory is a complex function that involves many parts and TBI may affect some parts more than others, such as short term memory. The Model Systems Knowledge Translation Center (MSKTC) provides a fact sheet in Spanish on memory and moderate and severe TBI.

Information/education page: Spasticity and traumatic brain injury (J72911) is an article in English that provides information about spasticity after TBI, which is common in people with severe TBI. It also includes information on how to manage and cope with spasticity. It is also available in Spanish.

Impact on Family and How to Help:

The Impact of a Recent TBI on Family Members and What They Can Do to Help With Recovery (MSKTC) (en inglés) provides information on how a recent TBI may affect family members and friends and provides information on coping strategies for family and friends, along with information on how to reward one self, problem solving for caregivers, and ways that family and friends can help the injured person. This fact sheet is also available in Spanish.

Technology:

Assistive technology for people with a traumatic brain injury (BrainLine) describes assistive technology (AT) for people with TBI and how different items may make a difference in the life of a person with TBI. The article also describes where one can get information on AT products for people with TBI (AbleData – en inglés) and how aging with a TBI can affect the person. This article is also available in Spanish.

Clinical Research:

New technology to treat brain injuries (QMAYOR) describes how scientists at the Sanford Burnham Prebys Medical, part of the Discovery Institute, have developed a new technology that could lead to new therapies for people with TBI. Their discovery provides a means of taking medications or nanoparticles to the damaged areas of the brain. A peptide sequence of four amino acids that recognizes damaged brain tissue was discovered. This peptide could be used to apply treatments that limit the spread of the damage done by a brain injury.

Description of functional outcome in pediatric traumatic brain injury after a comprehensive rehabilitation program (I241916) describes a retrospective study whose objective was to understand the functional evaluation after an intensive rehabilitation program in children with TBI, which is important so that clinicians may plan interventions and treatment resources once prevention has failed. The children in the study were characterized as having a good clinical outcome along with a good physical improvement. However, cognitive problems were noted and were the principal factor for changes in school attendance and return to a normal life.

Education:

In the Classroom: Supporting Students with TBI (90IF0067) (en inglés) is a NIDILRR funded project at The Center on Brain Injury Research and Training (CBIRT) (en inglés) that utilizes an educational and training program to boost the knowledge and skills of teachers and other educators in relation to students with TBI. The program includes (1) interactive learning modules that offer specific strategies and techniques to help manage TBI related cognitive, behavioral, and social problems in school; (2) a tool, called Steps for Success, that identifies and evaluates the effectiveness of support strategies; and (3) a resource center for educators that has printable forms, resource links, and practical tools that can be used in the classroom.

Returning to School after Traumatic Brain Injury (MSKTC) (en inglés) describes how TBI affects students, and gives some examples of physical, cognitive, emotional, and behavioral changes. This factsheet also discusses planning to return to school, how schools can support students with TBI, possible classroom placement options, challenging behavior in the classroom, and how educators can address the challenging behavior. It also includes resources for further information and is available in Spanish.

Employment:

Employment after a Traumatic Brain Injury (Oklahoma Department of Rehabilitation Services) is a fact sheet for people with TBI and their families residing in Oklahoma about the services they can receive from the Department of Rehabilitation Services at the Oklahoma State Department of Health. This fact sheet also provides information for students with TBI, returning to work after TBI, Social Security benefits and returning to work, and information on the Department. It also provides state resources. If you live outside of Oklahoma, please contact your state Department of Health, your state’s vocational rehabilitation agencies (en inglés), or your country’s Department/Ministry of Health.

Veterans/Military:

Community integration problems among veterans and active duty service members with traumatic brain injury (J75306). (En inglés). This article describes a study that investigated the community integration problems among veterans and military services members with mild, moderate, and severe TBI one year after their injury. It also describes how the study identified unique predictors that could contribute to these community integration problems. Community integration outcomes for the study included independent driving, employability, and general community participation. The study also included measures that assessed depression, posttraumatic stress disorder, and cognitive and motor functioning. The results from this study highlight the ongoing rehabilitation needs of people with TBI, especially mental healthcare that is evidence-based.

Resources:

  • Model Systems Knowledge Translation Center (MSKTC) (USA – en inglés) MSKTC advances a knowledge translation paradigm to ensure that research related to TBI, along with spinal cord injury (SCI) and burn injury research, is relevant and accessible to people with disabilities; families of people with disabilities, practitioners; researchers; advocates, and others. MSKTC works with the researchers in the Traumatic Brain Injury Model Systems (en inglés) and, in the process, they develop resources that are evidence-based for people with TBI, such as slideshows (en inglés), Hot Topic Modules (en inglés), Infocomics (en inglés), and Factsheets in English and Spanish.
  • Traumatic Brain Injury Model Systems National Data and Statistical Center (NDSC) (90DP0084) (en inglés), a NIDILRR-funded center, provides technologies, training, and resources to the NIDILRR-funded Traumatic Brain Injury Model Systems (TBIMS) that are innovative and evidence-based. Through this work, NDSC expands the rigor and efficiency of scientific efforts to evaluate the experience of people with TBI. NSDC provides resources to support the work of the TBIMS; provides new cultural competency resources, along with language translation services; collaborates with MSKTC on TBIMS exhibits and materials; and works on new collaborative partnerships. The NDSC has a great factsheet in English on demographics and the use of services by people with TBI.
  • org (USA – en inglés) is a website that provides information to the public on preventing, treating, and living with TBI and resources for people living with TBI and their families. They have a series of FAQs in English and Spanish that are a great way to learn about TBI.
  • The Brain Injury Association of America (USA – en inglés) has the mission of advancing awareness, research, treatment, and education on TBI and aims to improve the quality of life for everyone affected by brain injury. They provide resources, advocacy, information on employment and concussion, and support. They also help you find a Brain Injury Association near you (en inglés).
  • The Job Accommodation Network (JAN) (USA – en inglés) provides accommodation ideas for employees with brain injuries through several informational series: the Accommodation and Compliance Series provides ideas for employees with brain injuries/employees with executive functioning deficits and the Effective Accommodation Practices Series on Brain Injuries provides information on accommodation practices. JAN also provides information on job accommodations for people with brain injuries in Spanish.

Further Research:

About Answered Questions

Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned below is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked. This month’s question is: A family member recently experienced a traumatic brain injury (TBI) and I would like to learn more. Would you tell me about TBI, please? This edition of Answered Questions includes items that help educators learn about students with TBI; provide resources for people living with TBI and their families; discuss the TBIMS Centers; discuss the largest longitudinal database on TBI in the United States; examines community integration problems for Veterans with TBI; provide information on memory and TBI; describe assistive technology for people with TBI; describe spasticity and TBI; describes a new technology that could develop new therapies for TBI; discuss returning to school after TBI; and job accommodations for employees with TBI.

About mpgarcia

I'm the Bilingual Information/Media Specialist at NARIC.
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