Statistics indicate that within three to six months, most people recover from a concussion. So what happens if you don’t? What happens if, after 3 months or a year or several years, you continue to experience ongoing symptoms that have an impact on your day-to-day doings? The DSM-IV defines post-concussion syndrome as three or more symptoms which persist for longer than three months (American Psychiatric Association, 1994). In the literature, this experience has sometimes been given the label “post-concussion syndrome” and sometimes people who continue to experience ongoing concussion symptoms are diagnosed with “mild neurocognitive disorder” (American Psychiatric Association, 2013).
The research regarding strategies for living well with ongoing concussion symptoms is sparse. In their systematic review, Jaber and colleagues (2019), identified the following strategies as effective for improving participation and symptom management:
- psychotherapeutic interventions,
- counseling on recovery,
- connecting people to support groups and social supports,
- coaching and education in self-management strategies (including compensatory strategies, taking breaks, relaxation strategies, and exercise), and
- an individualised approach to service delivery.
In my clinical experience, things that are possible post-concussion include: returning to work and volunteering; returning to taking care of your family; returning to gardening, home DIY projects, and crafternoons; returning to cooking your favourite foods or baking up a storm; returning to teaching; returning to sharing knowledge and learning about art; returning to music, dancing, singing, and laughter; returning to your spirituality; returning to driving; returning to exploring rocky sea shores; returning to sex; … the list goes on.
The thing is, the symptoms that a person may experience might not go away – we can’t make any guarantees on that – they could fluctuate and come and go and they are influenced by a whole range of things going on within and around us. People can get back to doing what they love and realise that they are, and continue to be, whole and powerful and wonderful (and whatever else they want to be) as they are.
In my work as a community-based Occupational Therapist and on an early concussion rehabilitation clinic team, I often work with people who are continuing to experience concussion symptoms. Sometimes we meet within those first six months and most of the time, we don’t meet until months or years later. This is my favourite area of practice.
Why is this my favourite area of practice?
I get to combine all my passions: working with people in partnerships, sharing knowledge, co-design, the brain (#NeuroNerd), neuropsychology, and occupation-based practice.
Before I became an Occupational Therapist, I studied cognition and neuropsychology in my undergraduate Bachelor’s of Science (Honours) degree in Psychology. During my psychology degree, I spent three years in a lab researching how humans learn and interpret feedback in different learning contexts, exploring theories and research about executive functions and create an evidence-informed theory of what they are and how they work in the brain (this was my favourite course), and diving into our motivations and emotions. A lot of the work that people do with me in this area of practice is learning that what they want to do is possible and safe – and developing strategies for getting there. I get to see concepts I researched in my undergraduate degree in action and helpful in real life.
I love how occupation-based I am in this practice area and I find I can always apply occupational therapy and science models to practice. I get to bring in activities that people love as cognitive rehabilitation tools, to rebuild motor patterns and stamina, to restore self-confidence and pockets of joy, to support feelings of safety, to access emotional wellbeing, and to get back to the activities themselves (yeah intrinsic motivation).
What is challenging about this area of practice?
The lack of evidence to inform practice. In this area of practice, people that I work with not only experience physical and cognitive symptoms, they often also experience feelings of anxiety and depression, and many have also experienced trauma (either related to the injury or previously) and PTSD-like symptoms. A lot of the research out there, and that is available for non-health professional team members to look to, is sports concussion research, with youth and adolescents, or within military populations (Jaber et al., 2019). When people are injured at work or in a car accident, there can be so many other contextual factors that come into play and functionally the impact, anticipated recovery timelines, and the types of interventions that are recommended are different.
For example, with a person who sustained a concussion a few weeks ago, clinical practice guidelines recommend cognitive rehabilitation, coaching in metacognitive strategies, cognitive process retraining, chaining, graded return to activity, symptom management, coaching in short-term workarounds and pacing/planning/pausing/prioritising – it is very much a rehabilitative approach (CAOT-BC, 2019). When I meet people six months to two years post-injury, my occupational therapy plan can include all of the above, as well as more mental health and chronic condition management interventions including: exposure therapy, occupational activation, coaching in long-term workarounds, navigating ableism/disableism, motivational interviewing, soothing occupations like mindfulness and deep breathing practise, or psychotherapies like Acceptance and Commitment Therapy and Cognitive Behavioral Therapy – and clinically, this works, but there isn’t much research out there (that is specific to persistent concussion experiences) to back it up.
Another challenge is in the area of assessment – the psychometrics of so many tools used to assess psychosocial function and experiences with concussion symptoms are biased with one-way questions and language that can influence responses (i.e. “how severe is each problem in your life?” on a 5-point Likert scale). Some of the assessment tools out there can influence people’s experiences with their symptoms in a way that makes them worse – the words they use do harm. People can start to question if their health professional believes them or thinks it’s “all in their head” or hear harmful, often disableist, messaging about conditions based on the language of some of our assessment tools. We need better assessment tools and we need to look at assessment tools for not only their reliability and consistency with other tools, or their overall sensitivity and specificity, but actually break them apart, look at how the questions are designed and do factor analyses to see what the tools actually measure.
What is a golden nugget you have for occupational therapists considering working in this practice area?
Remember to think functional – don’t get bogged down in what is causing what – as occupational therapists, it is not up to us. Take a theory-driven occupational therapy approach: work with people to explore their goals, where they are now, what’s important to them, what’s getting in the way, what resources and strengths they have to support them, and what needs to happen so that they can move forward and live their lives meaningfully, flexibly using an appropriate theoretical model as a map. Include the activities that people love to do into their recovery plan – incorporating things that are challenging and restorative.
Could this area of practice be accessible to disabled Occupational Therapists?
Totally! If this is an area that you’re interested in, you can do it. It can be done in-person in a clinic, in the community, or over telehealth. It is very flexible. It does not require any specific motor skills. What you need to work in this area is knowledge of concussions and the brain, skills and further training in concussion-related therapies, clinical reasoning skills, and a capacity to work with people.
Author: Anna Braunizer, Reg. OT (BC)
Author Bio: Anna is a community-based occupational therapist living in Victoria, BC, Canada.
American Psychiatric Association. (1994). DSM IV.
American Psychiatric Association. (2013). DSM V.
CAOT-BC. (2019). Occupational therapy and concussion management [practice guideline]. Retrieved from: https://caot.ca/document/6994/CAOTBC_OTConcussionManagment_Final.pdf
Jaber, A. F., Hartwell, J., & Radel, J. D. (2019). Interventions to address the needs of adults with postconcussion syndrome: A systematic review. American Journal of Occupational Therapy, 73, 7301205020. doi:10.5014/ajot.2019.028993