Improving Care through Collaboration
Gaining a better understanding of demographic factors contributes to the knowledge needed to help each person as he or she recovers from TBI. All TBIMS centers contribute data on individuals to the national TBIMS database from the time of injury throughout their lives. NNJTBIS is a leading contributor to this important database. Each year, the NNJTBIS enrolls more than 50 newly injured participants, collecting information on age, minority status, employment, cause of injury, and injury severity, and collects followup information on more than 200 enrollees. These data yield important information on the long-term impact of TBI on individuals and caregivers, and are fundamental to TBIMS collaborative studies of the quality of life of individuals, their ability to function in everyday life, differences in menopausal symptoms in women with TBI, and the resilience of caregivers.
Improving Outcomes for Minority Groups
The TBI Model Systems examine recovery across various races, cultures, ethnicities, and socioeconomic communities. Minorities are often at greater risk for brain injury and less likely to receive quality care due to a variety of socioeconomic and cultural factors. By exploring these factors, researchers are developing culturally sensitive approaches as a way to improve rehabilitation outcomes, including recovery, quality of life, community participation, and employment. Their research underscores the importance of addressing diversity in recruitment efforts for rehabilitation research studies, to ensure that treatment protocols reflect the needs of minority individuals and their caregivers.
Supporting Caregiver Health
More than 5 million Americans with TBI need long-term assistance with activities with daily living. Most commonly, the primary responsibilities fall to family caregivers. Their stress-related problems adversely affect mood, physical health, family relationships, marital satisfaction and longevity. Most significantly, caregiver stress has a negative effect on the caregiving of individuals with TBI. Research aimed at identifying and addressing caregiver needs is helping them overcome their challenges, improve their quality of life, and provide quality care for their loved ones living with the lifelong effects of brain injury.
Educating Individuals and Caregivers
Helping individuals and families adjust to life after TBI is an important part of the NNJTBIS mission. Through the TBI News & Views newsletter, TBI consumer conferences, and social media outreach, we connect with the TBI community, and provide practical information on advocacy organizations, support groups, caregiver support, and vocational resources. Our popular consumer conferences attract more than 100 people with TBI and their caregivers. Podcast recordings available via SoundCloud and iTunes provide broader access to conference presentations by experts from the spectrum of TBI care and research.
The Principal Investigator of the NNJTBIS is Nancy Chiaravalloti, PhD.
Learn more about the Brain Injury Alliance of New Jersey
The NNJTBIS is supported by grant #90DP0032 from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Office of Special Education and Rehabilitative Services, US Dept of Education, Washington, DC.