Episode 5 - Support Systems: Supporting Persons Who've Had a Concussion/TBI

 
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Episode 5 - Synopsis

Moderator: Lesley Ruttan

Episode Description: Dr. Lesley Ruttan, a Neuropsychologist, and other professionals who support persons with concussions and brain injuries gather together in this episode to talk about their experiences and the challenges associated with accessing supports and services for their clients.

HOW TO LISTEN

MAIN POINTS, TIMESTAMPS, THEMES & RESOURCES

Challenges of Connecting People with Support – 4:23 

  • One of the biggest challenges today is Covid-19.

  • It is hard to figure out what supports people need in this new adapted environment.

  • Some services are waitlisted, this creates a barrier.

  • Varying services available in the different areas of the province, access to these services can be hard to come by in more rural areas.

  • Lack of publicly funded services can lead to insurance denying disability benefits in some cases.

  • Some cases can “fall through the cracks”.

  • Some people are unsure of where to start when it comes to brain injury.

Challenges of Supporting Others in Recovery – 8:39 

  • There are misconceptions about mild brain injury or concussion. People often expect a quick recovery but when it doesn’t happen on their timeline it can be frustrating. 

  • Sometimes comprehensive support is not available.

  • When the family Dr. is not available or on board with the process it’s hard to get referrals to appropriate healthcare providers.

  • Meeting expectations in school or other goals that they want to reach. Taking time off school can be a big challenge for students, especially from a psychological point of view.

  • The volume of paperwork that people must fill out can be overwhelming. The cognitive and visual dysfunction can make this even more difficult. This difficulty can make it hard to get the supports people need. 

  • The role of the injured person can change in the family dynamic, sometimes family members need to step up to take care of the injured person. Family support is so important in recovery.

  • Having a family centred approach to the injury is integral to the recovery process.

  • It can be hard to understand the invisible nature of injury, this can lead to people or family members questioning the injured person, thus making family environments more difficult for the injured person.

  • Financial issues for people seeking support can play a factor. Concussions do not necessarily have the same financial compensation as other injuries. This leads to additional stress on the family side of things, and additional mental health complications.

Available Supports and Support Gaps – 19:07

  • At post-secondary institutions, student accessibility centres have varying supports for people with concussion. Different universities have different protocols.

  • There are a lot of available supports online. ONF website has amazing resources for best practices and guidelines.

  • Gaps in support: publicly funded services for people going through the injury or for those who may be learning more about concussions and realizing they have been impacted by the injury without knowing. 

  • Love Your Brain Yoga can be a great way for people to begin opening up, coming together and sharing experiences.

  • Peer support groups that are 1 on 1 can help people understand that they are not alone. Peer support programs pair a person going through the injury with a person who has been through it, the experienced person become a mentor. This program is all done over the phone, so it limits barriers such as transportation.

Support Needs Throughout Each Stage of Recovery – 28:04

  • The OBIA’s Helpline talks with people at varying stages of recovery. People do not often know who they should be seeing in the early phases of concussion. People seeking help for long term supports and advocacy in the workplace or seeking help applying for ODSP. 

  • Psychotherapy for persistent concussion symptoms that have not resolved over time, additionally, people may be presenting mental health, PTSD, and loss of identity issues.

  • Supporting people through the recovery process is of the utmost importance. Understanding the cycles that people can get into is important as well.

  • Tele-rehab center at Toronto rehab with Dr. Robert Graham which offers FREE group sessions on mindfulness, psycho-educational group, cognitive behavioural therapy and more.

  • People who sustain a concussion are more susceptible to feeling the loss of identity opposed to people with severe traumatic brain injury. Concussion is a unique experience that presents itself in a more complicated (grey) way which can cause confusion.

Do people access health care for the diagnosis of the injury? – 35:51

  • Depends how in the injury was acquired. 

    • Example: Intimate partner violence tend to go underreported whereas sport related concussions are more likely to be reported.

  • In a school environment, students and athletes need documentation as they return to school and sport activity. This leads them to be more likely to get diagnosed because they are accountable to a system.

  • In youth cases parents want to get a diagnosis. There has been a lot more outreach to athletic communities that creates this awareness.

Why People Struggle to Talk About the Challenges – 41:08

  • Comparing ones current, injured self to their old self.

  • Sometimes people can have a lack of insight into the injury they are experiencing. Sometimes groups are not the best place to talk about injury, this is why one on one may be a better option to open up about what they are going through.

  • It can be hard to accept the fact that there may be things that they can’t do now that they used to do before. Accepting the new challenges, struggles and triggers can help people on their journey.

  • There is stigma around the post injury process. People also struggle with chronic mental health and pain especially when insurance is involved. 

  • The insurance process can be very invalidating. 

  • In some cases, family, friends, and society can alienate people and make them feel invalidated. 

  • When people do not feel heard or understood they can lead to lingering complications.

  • Tracking progress and celebrate little and big wins along the way can help people understand how far they have come.

  • Review year to year through a journaling practice can be an inspiring exercise for all people involved. Bringing together the entire support group throughout this process can be special.

  • Support systems (internal and external) can form amazing friendships and bonds over time as they learn more about each other. 

  • Often, injured people can focus on their deficits which leads them to focus on what they don’t have versus what they do.

  • Finding a mindset that is focused on solutions and what works for your brain now opposed to what used to.

Different Support Needs for Youth and Adults – 52:50

  • Developing brains in younger people can lead to a teasing out period where it is hard to understand what is a traumatic brain injury or concussion and what is developmental.

  • When parents come to seek help there is often more acceptance for physical therapy in society then psychotherapy.

  • People do not necessarily understand how an inter-disciplinary recovery models can work on both the emotional and physical health. 

  • There are not many youth and adolescent Concussion/TBI resources and programs.

  • The transition phase from high school to university or college can be difficult for a young adult to navigate on their own. It’s important to start the transition process early, not only when they are 18. Teaching about self-advocacy and the available supports are important for these students transitioning.

Building a Connected Environment of Support – 1:00:47

  • Integrated treatment centres and integrated support centres.

  • More public funding for services across the province.

  • More awareness on the injury and the various aspects of it.

  • Ensure primary care providers are up to date on their knowledge of concussions. 

  • Better collaboration between health care practitioners.

  • Ensuring that the work of the Ontario Neurotrauma Foundation Best practice guidelines lives on.

Resources

 
Ryan SuttonConcussion, Mental Health, Brain Injury, Traumatic Brain Injury, Support SystemComment