What Don’t We Know?


Am I the only one in this survey?

Summary of Abstract by PubMed


An online survey was developed to assess how well individuals with brain injuries and family/friends of those with traumatic brain injury (for this study, “family/friends” is collectively referred to as “significant others”) felt they were informed about the nature and consequences of brain injury.


A total of 117 significant others completed the survey. They were primarily female (84.6%), white (94.9%), and well educated (81.2%). A total of 149 individuals with brain injuries completed the survey and again were primarily female (63.8%), white (88.2%), and well educated (82.9%).


More than half of the significant other respondents (53.5%) indicated that they were not provided enough information about Traumatic Brain Injury (TBI). Up to 53.8% of the respondents with TBI felt they were not provided enough information, with 43% reporting dissatisfaction with services. Female survivors and those with mild brain injuries were significantly more likely to feel that they were not provided sufficient rehabilitation or information.


Given that more than half of all surveyed indicated that they were not well-informed about brain injury and its possible effects, it is evident that case managers and their teams need to be aware of and invested in their efforts to educate both individuals with brain injuries and their significant others (family and friends) about both the nature and consequences of brain injury. Specific recommendations for practice are included.

My Opinion

I don’t see a problem with the study. In fact, it confirms what we already know — neither the survivors nor those who interact with us feel we receive enough information about our options, the events taking place, the likely outcomes, and our opportunities after what ever takes place.

However, I see a few problems with the data: participants were primarily female, white, and well educated. Since TBI can affect anyone regardless of gender, ethnicity, age, income or education, the data set does not appear to represent the general population. In addition, the data set is too small to produce statistically significant results.

Nonetheless, survey results indicate what many of us know to be true — doctors, nurses, and social workers either don’t have or won’t share the information we want. The primary reason I started Beyond Adversity, and the primary reason many other organizations and group were founded, was to provide information to survivors and the people who interact with them.


Thanks to those who designed and implemented the study; all study participants; PubMed for summarizing the study; Google for helping me find the abstract; and all the other people who, directly or indirectly, made it possible fore me to include the picture and text in this post.

Leave a Reply

Your email address will not be published. Required fields are marked *