The Rehabilitation Research and Training Center (RRTC) on Community Integration of Persons with Traumatic Brain Injury at TIRR

T2: Increasing Community Awareness of TBI and Reducing Attitudinal Barriers

Project Director: Karen A. Hart, Ph.D.

Overview

Lack of understanding about TBI among family, friends, neighbors, co-workers, and others can lead to attitudinal barriers that limit a person with TBI from participating fully in their community. This project is designed to develop educational materials in English and Spanish that can be used by persons with TBI to inform persons in their community about brain injury. The materials are being developed with the Brain Injury Association of America, Inc., using input from people with TBI, their family members and friends. Training activities include:

Update

The first step in the project involved seeking the approval of the Institutional Review Board (IRB) to conduct a survey both online and on paper. Once IRB approval was obtained, the survey was made available online. Individuals with TBI, friends, families and others were asked for input on what should be included in the educational materials. When the survey was completed, the results were tabulated and those results can be found in the front page article of our Spring 2007 TBI Community News. Thank you to everyone who participated in this process.

The second step was to obtain the IRB approval to conduct face-to-face and telephone focus groups with individuals to learn from them what content should be included in the educational materials and also what formats might work the best. IRB approval was also received for this step. A flyer was designed and posted on the www.tbicommunity.org website and mailed and circulated to find volunteers to participate in the focus groups. The response to the flyer was very good and all focus groups have now been conducted. The narrative of each group was transcribed and the results tabulated.

These results were similar to the survey and directed us to produce an educational DVD. Nine key areas to be included are:

  1. People with TBI may look "normal", but they have real issues with which they are struggling.
  2. Some of those issues may include anxiety, mood swings, frustration and angry outbursts.
  3. Tiredness, lethargy and fatigue are directly related to the TBI. People with TBI are not “just lazy”.
  4. People with TBI are not the same as people with mental retardation or psychiatric illness.
  5. For a person with TBI, it takes longer to perform a task because so much effort is required to focus and concentrate.
  6. The recovery pattern will be explained in the DVD including how the person might have changed, that recovery is an ongoing process and that the magnitude of problems and issues is so much greater than those described by persons without TBI.
  7. Depression plays a big role in life after TBI.
  8. Memory problems and issues with short-term memory play a huge role in life after TBI.
  9. No two people with TBI are alike; there is no repeated person with TBI. If you know one, you only know one.

We are now in the process of filming and editing a DVD that can be downloaded from the Web site for viewing. It will contain all the elements that people with TBI and their families identified as most important. Many of the survey and focus group participants will appear in the video as stars of the show. Check back here for information on expected completion time.