12.2b The adjustment experience: The challenges

i) A family's experience (7 mins) - Angela's challenges

Angela is the mother of Steven. When Steven was 16 years old he was involved in a motor vehicle accident and sustained a traumatic brain injury.

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As you watch the video note down Angela's challenges?

What are Angela's challenges?
Check your answers here

Finding a routine
The hidden side of cognitive disability
Adjusting to change and loss of old life
Needing to find someone to debrief with
Feeling alone and isolated
Uncertainty of how to cope
Focus being on person with injury
Discharge to home process
Wanting longer in rehabilitation
Friends not understanding
Injury affecting family as a whole
Adjusting to life post injury
Dependency of patient
Caring for self
Adjustment to carer role and new life
Loss of normality
Change in work
Lack of advice
Planning required to go away
Misunderstandings from others
Changes from hospital to home – not having safety of hospital surrounds
Lack of understanding from outside
Finding time with partner

 

ii) Physical vs Cognitive injury

In the three families in the videos:

Jonathan has a traumatic brain injury.
Angela's son Stephen has a traumatic brain injury.
Cheryl's husband has a spinal cord injury

The experiences of families where a member has had a traumatic brain injury and where a member has had a spinal column injury have much in common. There are also some differences.

The following table highlights some of the different experiences of physical and cognitive injury.

 

Physical

Cognitive

  Wheelchair Cognitive Head

Challenges

  • Isolation/Alienation
  • Fatigue
  • Incontinence
  • Impact of carers
  • Access issues
  • Cost of equipment
  • Home modifications, community
  • Impact of Pain
  • Mental Stress 
  • Difficulty personality
  • Behaviour problems
  • Fatigue
  • Impact of carers
  • Legal issues
  • Consent
  • Guardianship
  • Financial concerns

 

iii) A person's abilities

When thinking about the adjustment experience of families after traumatic injury and the person with the injury is is useful to consider what a person's abilities include. The injury will have impacted on some of these abilities.

The graphic below shows a typical person's abilities.

When there has been a physical or cognitive injury the person may need support to achieve what they previously did using their own abilities.

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Click on the "Person" to display the person's abilities.
Click again to return to the opening screen.

These are people's abilities. A TBI or SCI will impact on these abilities.

 

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iv) What kind of support do families provide? 

  1.     Emotional support
  2.     Practical support
  3.     Supervision and prompting
  4.     Encouraging the person with the injury
  5.     Organisation
  6.     Advocacy
  7.     Networking
  8.     Social and financial support
  9.     Communication
  10.     Providing knowledge to staff
     Supports