Module 6: Continuing your rehabilitation journey

Continuing your rehabilitation journey

It has now been a few months after your TBI. You may be getting ready to go home after your hospital stay. You may have returned home already. Or you might be transferring to another facility to continue your recovery.

So what does the road ahead look like from here?

Community rehabilitation

Most people with moderate or severe TBI will need ongoing community rehabilitation after they have been discharged from hospital. 

You might remember from Module 5: What does recovery look like? that rehabilitation (or ‘rehab’ for short) is a program of different therapies designed to help you relearn skills and functions you have lost after your TBI. Specifically, neurorehabilitation is a type of rehab for people who have sustained brain injuries.

Community rehab can be accessed through:

• Outpatient services (going back to the hospital for rehab, when staying at home),
• Residential rehabilitation (living at a rehab facility – like the Brightwater Oats Street Rehabilitation Centre),
• Home-based therapy (a therapist will come out to your home to work on your rehab with you).

How is community rehab different from hospital rehab?

You’ll work on a broader range of functional skills

Community rehab is very different from rehab in the hospital. During hospital rehab, you worked on improving major functions that your doctors and medical team considered important for you to return home safely (27) – such as walking, eating and drinking, and toileting. You will most likely have worked on repetition of physical skills with one-on-one support from a therapist.

During community rehab, you’ll have the chance to work on many other functions that are needed in your day-to-day life. You’ll also be able to practice applying these skills in a real life setting. These skills might include:

• • Mobility,
  • Self-care – washing, grooming, toileting, eating and drinking,
  • Communication,
  • Domestic and household tasks,
  • Interpersonal interactions and relationships,
  • Finding your way around your environment,
  • Planning and organising your life,
  • Recreation and leisure,
  • Education,
  • Work and employment.

You will work towards independent living

In the hospital, most things would have been done for you. Hospital staff would have been readily available to help you with the tasks you had trouble with or functions that you might have lost after your brain injury. During community rehab, you will work with different therapists to work towards doing these activities by yourself. This is important so that you can learn to live as independently as possible.

Your therapists will work with you to relearn skills and functions you have lost after brain injury. Where possible, your therapists will aim to help you to return to the same level of performance as you had before your TBI – this is called functional recovery (7). 

However, it may not always be possible to regain all your previous functions, depending on which areas of your brain were injured and which physical and cognitive limitations you have after injury. In this case, your therapists will work with you to learn new strategies and skills to perform the same functions – this is called functional recovery (29). You may also need the help of some devices or technology. Your therapists will work with you to determine what works best to support your needs.

You will set your own goals!

Most importantly, you get to set your own rehab plan and goals to ensure that you work on the skills and functions that are the most important to you. This is called person-centred care (30). There will be more information on person-centred care and setting goals for rehab in Module 7: Setting goals and expectations for recovery. 

What will I do during rehab?

Rehabilitation will look different for everyone. The specific types of therapy you will need will depend on your personal goals and functional limitations. Therapy can focus on the following areas:

• • • Physical: Muscle weakness, balance, mobility, and coordination,
    • Cognitive: Memory, attention, planning,
    • Communication: Difficulties with understanding or speaking,
    • Psychological: Difficulties with coping and behaviour after the injury,
    • Occupational: Activities of daily living including self-care, household and domestic tasks,
    • Social Skills: Difficulties with interpersonal Interactions.

Many people focus on the physical limitations of TBI and physical rehabilitation. It can be a surprise to learn that rehabilitation also involves a large amount of cognitive (or mental) rehabilitation. This is because cognitive skills such as memory, attention, concentration and planning are essential functions required to carry out physical functions.

  “I was getting it mixed up. It was only silly items, but I would go in there and mess it up.
That’s when I started to understand that memory is a big part of the brain injury.”

                                                                                                                                                                      — Person with TBI

During your rehab, you will work with different therapists on a number of different physical and cognitive exercises – sometimes one on one and sometimes in a group with other peers. You will practice the same exercises over and over to help your brain and body to relearn the functions – this is called repetition (31). The exercises will start at the easiest level and become more difficult as you become more independent – this is called a graded approach (7).

Your rehab team will work with you to plan a rehabilitation schedule. In general, you will participate in each therapy a few times a week. 

Compared to hospital rehab, which is typically done in short bursts, community rehab exercises are longer in duration to help you build endurance and independence over time. You might also find that the therapy gains you make now will be slower than when you were at the hospital. However, you will still continue to make gains if you work on them.

Summary of differences between hospital and community rehabilitation.

How do you feel about starting rehabilitation?

Now that you know more about what community rehab will look like and the road ahead, it is a good time to take a time-out and ask yourself: How do you feel about starting rehab?

Rehab is not easy. In fact, it requires a lot of hard work and is a long and slow process. You will need to actively engage in hours of repetitive exercises each week for months. This can be frustrating. If you are relocating to a dedicated rehab facility, you will also be away from your home, and family and friends. 

Different people will have different feelings about starting rehab. You might be excited and eager to get started as soon as possible. Or you might be feeling low in energy and lacking motivation. Some people even feel angry that their life has been disrupted and they now need to do months of rehab instead of getting on with their usual life.

These are all normal reactions. 

“Sam (name changed) was not ready [for rehab] at that time.
  He needed help to deal with the trauma and life-changing event, something to address loss and grief. Then rehab would be helpful. But [at that time] I was not sure about    Sam’s readiness.”

— Mother of adult son with TBI 

Researchers have found that psychological (or mental) readiness is strongly related to rehabilitation success. This means that people who are more motivated and ready for change when starting rehab are more likely to complete their rehab program and make larger improvements. This is true not only for neurorehabilitation but all types of other rehab programs such as sports rehab and drug and alcohol rehab (33).

Starting rehab when you are not ready can sometimes make the rehab process even longer and more difficult than it already is – not just for yourself but also for your loved ones and healthcare team. You might not get the full benefits of rehab if you start before you’re ready (32).

             References

1. 1. 1. Agrawal A. Brain injury: Functional aspects, rehabilitation and prevention: BoD–Books on Demand; 2012.
      2. Prigatano GP, Schacter DL. Awareness of deficit after brain injury: Clinical and theoretical issues: Oxford University Press; 1991.
      3. Pagan E, Ownsworth T, McDonald S, Fleming J, Honan C, Togher L. A survey of multidisciplinary clinicians working in rehabilitation for people with traumatic brain injury. Brain Impairment. 2015;16(3):173-95.
      4. Hylin MJ, Kerr AL, Holden R. Understanding the mechanisms of recovery and/or compensation following injury. Neural plasticity. 2017;2017.
      5. Santana MJ, Manalili K, Jolley RJ, Zelinsky S, Quan H, Lu M. How to practice person‐centred care: A conceptual framework. Health Expectations. 2018;21(2):429-40.
      6. Zbogar D, Eng JJ, Miller WC, Krassioukov AV, Verrier MC. Movement repetitions in physical and occupational therapy during spinal cord injury rehabilitation. Spinal cord. 2017;55(2):172-9.
      7. Duncan PW, Bushnell C, Sissine M, Coleman S, Lutz BJ, Johnson AM, et al. Comprehensive stroke care and outcomes: time for a paradigm shift. Stroke. 2021;52(1):385-93.
      8. Forsdyke D, Smith A, Jones M, Gledhill A. Psychosocial factors associated with outcomes of sports injury rehabilitation in competitive athletes: a mixed studies systematic review. British journal of sports medicine. 2016.