New Research May Help People with TBI Show They Are #MoreThanMyBrainInjury

March is Brain Injury Awareness Month. According to the Brain Injury Association of America, more than 5.3 million children and adults in the US are living with a traumatic brain injury (TBI). This year’s awareness campaign, #MoreThanMyBrainInjury, seeks to educate the public about what it’s like to live with a TBI as a chronic condition, reduce the stigma around TBI, improve care and support for TBI survivors and their families, and showcase the diversity of the TBI community.

Hundreds of research and development projects launch every year, aiming to support people with TBI at home, at work or school, and in the community. Here are four most recent NIDILRR-funded projects whose goals and objectives flow right along with this year’s #MoreThanMyBrainInjury campaign:

Participatory Community Integration for TBI Survivors: Development of a Computer Adaptive Test. Spaulding Rehabilitation Hospital

This project develops a cutting edge computerized adaptive test that efficiently measures community participation of TBI survivors to help with needs assessment, connecting individuals with resources, and improving participation in meaningful life roles. The Traumatic Brain Injury-Participatory Computerized Adaptive Test (TBI-PCAT) includes items specifically developed for those with TBI focusing on six domains of participation: Participatory interactions and activities, relationships with family and friends, work and employment, romantic relationships, and sexual relationships.

iManage Sexual Wellness: Development of a Symptom-monitoring/Self-Management Program to Enhance Sexual Wellness After SCI and TBI. University of Delaware

This project develops and evaluates iManage, a web-based symptom-monitoring/self-management system to improve sexual wellness in individuals with spinal cord injury (SCI) or TBI. Sexual wellness, including the ability to participate in sexual activities, experience quality intimate relationships, identify as a sexual being, and experience full societal participation is a key dimension of recovery after traumatic injury.

BeHEALTHY: Chronic Disease Management for Traumatic Brain Injury (TBI). Indiana University School of Medicine

BeHEALTHY aims to produce new knowledge to address evidence gaps in the management of TBI as a chronic condition. Growing evidence demonstrates brain injury can be a chronic, dynamic health condition with persistent health and psychosocial issues. Identifying chronic brain injury is essential for managing associated life-long conditions due to injury, and to improve health, independent function, and societal participation for individuals with TBI.

TBI Resource Bundle for American Indians. American Institutes for Research

This project develops a TBI resource toolkit in collaboration with the Great Plains Tribal Chairmen’s Health Board (GPTCHB) with the goal to increase awareness, knowledge, and health behaviors leading to improved health and function outcomes for American Indians with TBI and their families. The research team applies culturally appropriate knowledge translation strategies to adapt existing TBI resources developed under the NIDILRR-funded Model Systems Knowledge Translation Center. The resulting resource toolkit emphasizes the importance of culturally appropriate stories and/or images through info-comics (short stories illustrated with pictures, like comic strips, which both inform and entertain); short videos; infographics (presentations of data using visual images rather than focused only on numbers); storybooks for children; and/or songs.

These four projects join more than 35 TBI-related projects underway right now. These include the diverse studies conducted by the TBI Model System Centers, and other innovative research and development projects in technology, employment, caregiving, and underserved communities. Explore these projects to learn more about TBI research and development and how it’s changing minds about brain injury.

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