A patient's ability to advocate for him- or herself after traumatic brain injury (TBI) is an important part of recovery and rehabilitation that can impact quality of life and overall health. Teaching basic self-care and activities of daily living skills has always been an important component in a comprehensive rehabilitation program for TBI patients. Teaching advocacy skills is the subject of a Mayo Clinic-led clinical trial now under way.
The Brain Injury Associations of Minnesota, Iowa, and Wisconsin are partnering with the Mayo Clinic TBI Model System (TBIMS) in a research study to identify how best to teach advocacy skills to people affected by TBI. The Midwest Advocacy Project (MAP) represents the first randomized, practical behavioral trial studying how a community-based advocacy experience can impart effective self-advocacy and systems-advocacy skills to individuals with TBI as well as their families and significant others.
The intent of the project is to help survivors of TBI and their family members to be effective self-advocates, advocates for others, and community organizers. The anticipated long-term outcome is the nationwide use of an effective advocacy training program. The target populations for the MAP are individuals affected by TBI — patients, their families and significant others — in 3 contiguous Midwest states, each state's Brain Injury Association, public policymakers, the TBI research community, and other health care professionals.
Study participants will be asked to attend 4 monthly sessions in Minneapolis/St. Paul, Des Moines, Iowa or Madison, Wis., depending on their state of residence. Assistance with travel expenses will be offered for those residing more than 60 miles from the training site. All participants will receive a research stipend on completion of the 4 sessions.
This project represents an opportunity for the public to contribute to important TBI research and join with others eager to gain better advocacy skills. For additional information and an application, people interested in participating in this study may contact:
In 1998, Mayo Clinic successfully competed for a grant from the National Institute on Disability and Rehabilitation Research (NIDRR) and was designated as a Traumatic Brain Injury Model System Center.
TBIMS Centers contribute to a database that allows prospective, longitudinal multicenter study of the course of recovery and outcomes after TBI. NIDRR also supports center-specific research and collaborative research among centers.
One of 16 TBIMS Centers in the United States, the Mayo Clinic TBIMS Center is currently in its third consecutive 5-year funding cycle and provides services along the continuum of care after TBI, from the initial physical examination after injury to community participation.
Mayo Clinic TBIMS Center is part of the Department of Physical Medicine and Rehabilitation at Mayo Clinic in Rochester, Minn. Mayo Clinic providers from multiple disciplines, specialties, and subspecialties work as an integrated team to achieve NIDRR's ultimate goal: to maximize inclusion and social integration, health and function, employment and independent living of individuals of all ages with disabilities related to TBI.
Mayo Clinic's research program is directly aligned with the NIDRR mission of improving the lives of individuals who experience TBI and of their families and communities, by creating and disseminating new knowledge about the natural course of recovery, rehabilitation, treatment, and outcomes after TBI.