Helping Families and Survivors Cope with Life after Brain Injury

Helping Families and Survivors Cope with Life after Brain Injury

By Marilyn Lash, M.S.W.

Educating the family about brain injury – ready or not!

Support and education are needed for survivors and families.

Support and education are needed for survivors and families.

Information and education are the keys to helping families cope with the many changes that come with a survivor’s traumatic brain injury. But not everyone agrees on when and how to educate families and survivors. “They’re not ready. We gave them information but they still don’t understand. They’re in denial.” That’s what I hear over and over again from clinicians. Who is this “THEY” that we’re talking about – families, that’s who!

I speak and write often about the emotional impact of traumatic brain injuries on families. We readily toss around terms like “adjustment” and “acceptance”, but families living with and caring for a spouse, child, parent or sibling with a brain injury are the first to question what this really means and whether it can even be defined. It amazes me that over the years I still hear the same comments and questions from professionals, whether they are employed in medical and rehabilitation settings or community programs. While they universally recognize the importance of the family in the care and recovery of the survivor, they are still unsure how to support and educate them.

Lost opportunities to educate and support families

Helping families has become a more difficult challenge over the years as access to brain injury rehabilitation programs has become more limited due to more stringent admissions criteria and payer approval. When I was a social worker in a brain injury rehabilitation program back in the mid 70s, 3 to 6 month inpatient stays were routine. We had lots of opportunities and ample time to counsel, support and educate families. We spent months counseling, preparing and training families as discharge plans were developed and community supports explored.

It’s a different world now. Lengths of stay in an in-patient rehabilitation program are now measured by weeks, not months – sometimes even in days. This means that clinicians are under greater pressure than ever to treat patients with complex needs in short timeframes. Too often, this means that the opportunities to educate and support families are lost or compromised.

So many families describe the experience of the survivor’s discharge from rehab and going home as like “falling off a cliff.” All those experts are no longer there when they have questions or need advice. It’s now up to the family to figure out what to do – whether it’s a physical, cognitive, social or behavioral challenge. “Who do I call? What do I do?”

New curriculum for family education and support – BICS

Dr. Samantha Backhaus is a neuropsychologist at the Rehabilitation Hospital of Indiana. She not only recognized this “over the cliff” phenomenon, but she did something about it. She developed a unique 16 week support and education program for adults with brain injury and their caregivers called Brain Injury Coping Skills or BICS. Using an approach that combines therapy with education, stress management and problem-solving skills, adults with brain injury and their caregivers learn new skills and techniques to help them live with the behavioral and cognitive challenges commonly seen after an acquired brain injury.

Dr. Backhaus has now taken this program and produced a workbook titled Brain Injury Coping Skills: A support and education program for adults with brain injury and their caregivers. It includes content for 20 sessions with detailed instructions for facilitators, session activities, homework assignments, and a CD for handouts and worksheets. Dr. Backhaus is now speaking around the country to train clinicians and her work has resulted in the 2009 McDowell Award by the American Society for Neurorehabilitation.

One response to “Helping Families and Survivors Cope with Life after Brain Injury”

  1. Janet Cromer says:

    Hello Marilyn,
    Dr. Backhaus and Ms. Ibarra have made a big contribution. As a caregiver and support group facilitator, I know how much information families are expected to absorb and how fast they are expected to “get with the program.” Professionals often don’t realize families are in shock and grieving during those early weeks. This workbook seems to offer self-paced education and a ready resource for continuing rehab and managing problems at home.

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