Chronic traumatic encephalopathy: what do parents of youth athletes know about it?
Daugherty J, Sarmiento K. Brain Injury. 2018. [Epub ahead of print] DOI: 10.1080/02699052.2018.1530801
Take Home Message: Most parents of youth athletes (aged 5-18 years) are lacking access to evidence-based educational materials about chronic traumatic encephalopathy (CTE).
Chronic traumatic encephalopathy (CTE) is widely discussed in popular media and often with sensationalized headlines based on cases studies/series. The public may have a hard time finding scientific research on CTE and thus may poorly understand CTE while relying on popular media sources. To explore this further, researchers explored parental knowledge regarding CTE in the summer of 2017. The researchers used a large survey regarding consumer, marketing, lifestyle, and health issues (Porter Novelli Public Service’s SummerStyles public opinion survey). Within this survey, parents were asked 12 questions about their knowledge, opinion, information needs, and preferences regarding who should provide information about CTE. The authors focused on responses from 674 parents who had at least one child (aged 5-18 years) who participated in youth or school sports. Overall, the parents were mostly 30 to 59 years old (92% of the sample), possessing at least some college experience (80%), married or cohabitating (89%), relatively affluent (annual income > $75k; 62%), and from a metropolitan area (87%). Approximately half of the parents had at least one child who played contact sports. About 70% of the parents felt children should start playing contact sports before age 10, but only 37% of parents who had a child only in noncontact sports agreed. Almost 40% of parents reported being somewhat familiar with CTE, and this percentage was higher in parents of contact-sport athletes (~43%) compared to non-contact-sport athletes (~34%). While almost 30% of parents expressed concern that their child may develop CTE from sports participation, only 18% reported receiving educational materials regarding CTE. The preferred sources of CTE education for parents were doctors & nurses (70%), their child’s coach or sports program (54%), their child’s school (40%), a health department or government agency (35%), and lastly media or spokesperson professional athletes (23%). Importantly, 12% of parents believed that they could never protect their child from CTE, 13% thought that sports were the only cause of CTE, 11% believed that signs/symptoms of CTE show up right after head or brain injury, and 11% believed that doctors and nurses can cure CTE.
This study highlights the lack of access to educational content for CTE. Additionally, parents had inconsistent views of CTE and the ability to modify the onset of the disease. Fortunately, only a minority of respondents had misconceptions (i.e. that sports are the only cause of CTE). It would be interesting to better understand CTE knowledge among all parents with school-age children because parents with similar misconceptions may not allow their children to participate in sports. Another vital component which the researchers omitted was how parental knowledge of CTE aligned with the current research evidence. There are competing views in published peer-reviewed literature regarding the cause, prevalence and the consequences of CTE, as well as whether it can be detected and treated in living individuals. As such, healthcare providers are caught in the middle of popular media depictions of CTE and parental (and athlete) concerns with no definitive evidence-based education to relay to these concerned individuals. The CDC created an educational handout about CTE; however, this document contains statements which may not be widely accepted as factual among some researchers and clinicians. It is important not only for healthcare providers to maintain a working knowledge of the evidence surrounding CTE, but also for evidence-based resources to be made available to the public to help reduce the impact of prominent popular media on the perception of CTE.
Questions for Discussion: Who should be responsible for keeping the public up to speed with information about CTE? If asked about CTE, would you be able to discuss the current scientific evidence with a parent or family?
Written by: Sam Walton, MEd, AT
Reviewed by: Jeffrey Driban
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I thought this article was very interesting and I am glad I came across it. As an athletic training student, I have seen many parents at my past clinical sites who undermine concussions. Perhaps there is a lack of education about CTE, and maybe there are misconceptions. I have also seen parents at the other end of the spectrum who are educated about concussions, but they tell their child to continue playing through it. In that situation, I wish I had been in a position where I could've presented the current research to this parent. I feel that in the schools, the athletic trainer should be responsible for concussion education to coaches, parents, faculty, and students. In the community, EMS personnel can educate about concussions. Personally, if I were asked about CTE, I feel I would be able to discuss current scientific evidence with a parent or family because I read a lot of research. In general, I feel that most healthcare professionals stay up to date and knowledgable on current research. Not staying up to date on current research may be detrimental to your current practice or even decrease your ability to provide sufficient patient care.
Hello Ms. Monette, I think you have touched on an important point about the knowledge and attitudes toward concussion in our society: as clinicians and researchers we are walking a tightrope where we want people to take head injuries seriously, but on the other side, the stigma that one concussion will ultimately lead to degenerative disease is also deleterious.
I also wholly agree with you that staying up to date on the research and how it affects our practice is imperative. Most states have a law requiring education for parents, athletes, coaches, and/or administrators – but many schools still don't even have access to an athletic trainer!
Long story short, we still have work to do, and it sounds like you are in a great spot to be an advocate and to help those around you stay up to speed with what they need to know. Keep up the good work!