Support for Survivors and Caregivers After Brain Injury – A Program With 12 Life Themes

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Brain Injury Category Brain Injury

Too often, a person is defined by their condition or disability. Many survivors of traumatic brain injury report that others see their disability first and the person second. When the disability is physical, the effects may be visible such as difficulty walking or using an arm. While communication impairments are less visible than an amputation or paralysis, they can be readily apparent when the person has difficulty speaking or understanding language. Cognitive impairments and disabilities can be much less visible and more difficult to categorize or describe. Yet changes in the ability to think and learn are among the most common consequences of brain injury. Difficulty with problem solving, reasoning, impulse control, and initiation are just a few examples of common cognitive changes that can affect the survivor’s ability to live independently, attend school or hold a job. When a person is defined by their disability or impairments, the full scope of the person’s life and accomplishments is minimized.

Once the medical crisis has passed and attention has shifted to adjusting to life at home and in the community, many caregivers and family members are unsure how to best help and support the individual. A good place to start is with these basic questions.

  • How can I help the person sort out his life again?
  • What does she hope to achieve in the future and are her goals realistic?
  • How do I talk about these things with him?
  • How can I help care for her without taking over her life?

Patty van Belle-Kusse and Judith Zadoks have developed a program that views the entire person, not just the brain injury. It is designed to support both survivors and their caregivers including families. The method is based on:

  • developing a personal profile of the individual
  • identifying key life events
  • examining the meaning of the diagnosis
  • describing the individual’s abilities and limitations
  • looking at pre injury personal development, and
  • identifying the current lifestyle and coping strategies.

An acquired brain injury can affect virtually any aspect of an individual’s life. Not only is each brain injury unique, but the effects on each person’s life are unique as well. Van Bellle-Kusse and Zadoks have identified 12 areas of life to consider when examining the impact of a brain injury on an individual. They are:

  1. appearance
  2. health
  3. family and relationships
  4. sexuality
  5. work
  6. recreation
  7. social contacts
  8. housing and housekeeping
  9. finances
  10. certainty about the future
  11. independence, and
  12. meaning in life.

Only by examining how a brain injury has affected the survivor’s ability to function in each of these areas can it full impact be appreciated. This psychosocial approach recognizes and integrates the family into the caregiving and treatment program. It recognizes the complexity and significance of those very special relationships between not only the person and the family – but also between the person and the caregiver – and the caregiver and the family. This approach honors, respects and acknowledges all the vital partnerships and relationships that are necessary for rebuilding one’s life after brain injury and for maximizing the quality of that life.

Marilyn Lash, M.S.W., Lash and Associates Publishing/Training, Inc. Books, pamphlets and information on the treatment, rehabilitation and recovery of traumatic brain injury in children, adults and veterans. For more on living with brain injury, see the book Supporting Survivors and Caregivers after Brain Injury: A program for psychosocial support by Patty can Belle-Kusse and Judith Zadoks at

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