Interview with Samantha Backhaus, Ph.D., author of Brain Injury Coping Skills

Interview with Samantha Backhaus by Barbara Stahura 

October 4, 2012

A Conversation with Samantha Backhaus, Ph.D., on Brain Injury Coping Skills: A Support and Education Program for Adults with Brain Injury and Their Caregivers

With Brain Injury Coping Skills, Samantha Backhaus, Ph.D., and Summer Ibarra, M.A., have created a program that, when used with a trained facilitator, can assist people with brain injury and their family caregivers in learning to live more satisfactorily with all the changes brought about by the injury. Brain Injury Coping Skills, or BICS, is based on Cognitive-Behavioral Therapy, one of the most validated therapeutic interventions, which gives people the tools to explore their belief systems about themselves, others, and the world, and then make changes to those beliefs when necessary. Written in easily accessible language, Brain Injury Coping Skills offers seven modules, each complete with goals, times for discussion and review, and worksheets. Survivors of brain injury and family caregivers alike will benefit from participating together in a BICS group.

A respected clinical neuropsychologist at the Rehabilitation Hospital of Indiana inIndianapolis, Dr. Backhaus created BICS and won the 2009 McDowell Award for Best Presentation presented by the American Society of Neurorehabilitation and was named a Healthcare Hero in her community in 2001 for her work in neurorehabilitation.

Why did you think this book was necessary?

Samantha Backhaus: Through the years, I have worked with many survivors of brain injuries,  as well as family members/caregivers who seem to have many commonalities and report feeling distressed over similar things. This has typically included complaints about feelings of loneliness, difficulty coping with depression, frustration, irritability, anger, and anxiety. People also wanted to learn more about their injuries, their recovery, and how it has affected the family. Finally, individuals wanted an opportunity to connect with each other. If you read the Dr. Lisa Thompson story, which was published in the book, it clearly describes an unfortunate path taken by Dr. Thompson due to the severity of the injury and her difficulties with depression. Her story illustrates the importance of making sure these issues are addressed in both survivors and caregivers so that people can continue to have good long-term quality of life after brain injury.

Why don’t rehab teams and psychologists/psychiatrists typically address potential post-injury issues with the family as well as the survivor?

Samantha Backhaus: Sometimes, I believe we lack the education and understanding that family and caregiver issues can play such a significant role in the rehabilitation outcome for a survivor of brain injury. Even when we are aware, sometimes insurance limitations, case loads, and hospital requirements limit clinicians from being able to provide the optimal care that should be provided to families and caregivers.

This is a constant struggle, but the aim is to always make sure we get to adequately address these issues. Interestingly, even in times when we have offered extra support programs for families and caregivers, their own limitations (other responsibilities, their jobs, lack of transportation, time, or energy) have affected their ability to participate in such programs being offered.

You write (pg. viii) that “addressing the needs of caregivers can not only improve their well-being, but also facilitates the rehabilitation of their loved ones.” Why is this?

Samantha Backhaus: Research has shown that family members suffer significant psychological distress and actually end up receiving full psychiatric diagnoses many times after a loved one suffers a brain injury. They go on to experience problems in their health and physical functioning, and their adaptation to the injury becomes impaired.

Studies have shown that when a family member or major caregiver starts to suffer from these consequences, this “negative experience” can often affect how the survivor of the injury copes and adjusts to challenges. Family and caregiver well-being can affect or limit resources for the survivor including financial, transportation, access to medical and rehabilitation support, as well as psychological support.

Research has shown that families who receive greater support and services, as well as learn adaptive coping strategies are less likely to show marked levels of deterioration. Meeting the family needs is likely to improve patient and family emotional well-being, and reduce patient and family psychological distress.

What is “perceived self-efficacy” and why is it important after brain injury?

Samantha Backhaus

Samantha Backhaus: Perceived self-efficacy (PSE) is a person’s confidence in their ability to handle challenging situations, in this case, related to the brain injury and consequences of the injury. For example, someone with low PSE is likely to immediately feel anxious and overwhelmed by the situation. That person is likely to say to him- or herself, “I just can’t do this. This will never work. I’m sick of this.”

They may go on to ruminate on negative thoughts of helplessness and victimization such as, “Why do bad things always happen to me? No matter what I do, nothing ever works out for me.” Someone with a high PSE may acknowledge the difficulty of the situation, but they are more likely to take on a positive problem-solving orientation or have positive self-affirmations. For instance, they are more likely to say something like, “I know I can do this. I’m a smart man and I simply need to think things through.”

How did you choose what elements to include in BICS?

Samantha Backhaus: I ran several focus groups and asked both survivors of brain injury, as well as caregivers, what were the things that they believed were important to learn after the injury. Also, numerous studies show that families express the need to learn the following:

  1. more information about the injury and how it relates to their loved ones;
  2. the expectations for recovery;
  3. how to communicate better with rehabilitation professionals;
  4. skills for handling neurobehavioral, cognitive, and emotional difficulties;
  5. available community resources (financial assistance, service providers, and community programs); as well as
  6. experience opportunities to connect with other survivors and caregivers.

Thus, the modules (or topics) designed in BICS directly correspond with what research and studies from our focus groups have shown.

Why did you base the BICS program on cognitive-behavioral therapy?

Samantha Backhaus: Cognitive-behavioral therapy (CBT) is one of the most well-validated therapeutic interventions that have been demonstrated to be effective and useful at helping people adjust and cope with difficult situations. The premise is that we (even without brain injury) each have a set of belief systems or schemas in which we view ourself, others, and the world. We are not always aware of these belief systems and many times, they are quite automatic and occur at a subconscious level. When an event occurs (I give a talk), we have an emotional response to this (I feel anxious). We make an attribution about either ourself or the situation and then respond to that. Based on our attribution, we either respond well or we don’t.

For example, while giving the talk I start to feel very anxious because as I look around the room, I think to myself, “These people are bored. They think I’m an idiot. They think my talk is too elementary and they are wishing they hadn’t woken up early this morning to come see me because I’m not worth it.

You can see how for just one event, we have the ability to have multiple thoughts (some of which we may not even consciously be aware of). In this one case, I utilized several cognitive distortions including mind-reading, labeling and personalization, making false assumptions and attributing them to my sense of self-worth, which may even tie into something we call our core belief systems, which we talk about in BICS.

Well-published clinicians and researchers in the areas of brain injury have advocated for the use of CBT in this population (despite the myth that survivors with brain injury cannot learn and remember complex information). No matter what, we are all capable of having such strong core belief systems and, based on those beliefs, making negative attributions about events, particularly after a brain injury occurs. CBT for treatment of brain injury has been shown to promote effective stress management, problem-solving, and coping skills. It may not be the only type of therapeutic intervention that could be used, but it certainly has a strong place in restructuring negative thoughts.

Give us an overview of how the book should be used.

Therapist making notes.

Samantha Backhaus: The book is a therapist manual that outlines what each of the modules are. I would encourage therapists to read through each of the modules for the content, ideas for explaining the content, as well as ideas for homework and in-session activities to demonstrate the ideas in that section. Surely, someone could pick up the manual and literally read through every section and talk about each of those sections in the manual, but even rarely do I ever do that myself.

Each group I have worked with has been different. There have been many times when I have skipped over certain sections in the manual that did not pertain to the group. For example, a couple of times, I had a group that only consisted of individuals with traumatic brain injuries. Thus, there was no need to do the section on stroke or hypoxia. Also, when I felt the group as a whole struggled with a particular issue, I may have spent more time on that issue, cutting back or skipping a whole other section for the benefit of the group.

This type of manual should be “individualized” to each group, to the best extent possible. I don’t think that a therapist can exactly predict either what they will do in the manual until they better get to know the group after several sessions. The front of the manual also has a section called Guidelines for Facilitators, as well as the section Group Format. I think these two sections nicely summarize what I am trying to say here.

Why do you have participants come back together six weeks after the last session?

Samantha Backhaus: The purpose of the six-week BICS booster session is to review coping skills or adaptive cognitions that helped the person feel and respond better in their world. It is to help with carryover of strategies, as well as to reinforce practicing their favorite skills. Also, during these six weeks, individuals will have had a chance to be on their own and practice these strategies. Meeting back in six weeks will allow the group to talk about their accomplishments during this time, as well as practice problem-solving situations that arose during the six weeks.

Studies and clinical experiences have shown that you don’t completely change someone’s personality after 16 or 20 sessions. You might change someone’s ability to try having a “new look” on challenges, or to even try using some adaptive or healthy coping strategies. However, people unfortunately stop using certain tools that have helped them because they either think they are doing so well that they don’t need to use them anymore, or they forget the strategies or fall out of the habit of using them. It is hard work to keep practicing these strategies and sometimes, it is easier to just “not try.”  Sometimes, we even forget how to use them.

The six-week booster session will allow individuals to have a sense of accountability to continuing to practice these strategies on their own and report back to the group on how they are doing. It also helps normalize for everyone that it can be easy to let these skills go if we don’t continue to practice. I always use an analogy of a professional tennis player or Olympian swimmer. Just because you get so good you make it the Olympics, you don’t stop practicing once you get there!

Injured people and family caregivers attend these sessions together. Have you found that it’s easy or difficult for them to be honest about difficult subjects?

Samantha Backhaus: These are all great questions. I find that a combination of things occur in BICS. Yes, it is often quite difficult for caregivers to say things in front of their loved ones who have survived a brain injury. What will often happen is that many caregivers will start connecting with each other outside of the sessions, and that is how they often get the time they need to honestly connect with each other.

There is also a session called Caregiver Connection and Survivor Support. In this session, the group is split up where one facilitator allows the caregivers to connect with each other, and the other facilitator reviews pertinent content with the survivors. This way, individuals have an opportunity to share some of their concerns with a trained clinician who can help guide and problem-solve with them.

Certainly there are pros and cons to having it be a group that is designated for survivors alone, caregivers alone, and combining the two. Like with any good intervention, I would hardly ever recommend that someone only take advantage of one resource in the community. I believe the best outcomes will be when an individual takes advantage of several resources tailored to fit individual needs.

You define recovery after brain injury as “finding the new you and getting meaning back into your life.” Please explain.

Going home!

Samantha Backhaus: Recovery after brain injury to me means that a person will go through phases or periods of time in which they start to feel better and do better. How much better that person gets is not a predictable factor to me. I would probably be pompous if I claimed to be able to exactly predict how much better a person is going toget after an injury. The manual actually explains all of the different factors that could affect the person’s recovery.

Defining the “new you” is not a phrase that I personally coined, but rather what hundreds of individuals have used after they unfortunately figured out that they didn’t get 100 percent back to themselves. Even those who did end up getting almost a full recovery, those individuals became a “new you,” so to speak. Because no trauma or event this powerful can ever leave the person feeling that they are exactly the same person. Most people rather like knowing that they have become someone better!

What is Wise Mind and why do you stress it?

Samantha Backhaus: This question could make me talk for hours! Wise Mind is ultimately what we strive to be and how we strive to make decisions. Whatever the purpose of life is for us, we spend our time making a series of decisions to accomplish goals related to that purpose. It is our ability to make those decisions that either causes us to move in the direction of accomplishing those goals or to adjust our thoughts and actions when we detract from those goals, even when things become out of our control.

The term Wise Mind is taken from one of the main premises of Dialectical Behavioral Therapy (DBT) which, in essence, helps individuals find a sense of balance and healthy ways of responding to this world. Broken down into simplistic parts, we have an Emotion Mind in which we tend to respond to the world according to what will make us feel good or avoid what makes us feel bad. We also have a Rational Mind. When we use our Rational Mind, we tend to make decisions solely based on logic and reasoning, without thinking about the emotional consequences of the decision.

I will joke around and often use characters in Star Trek to help depict these ideas. Spock, the Rational Thinker, will advise Captain Kirk to either engage or disengage from a potential solution solely based upon probabilities of certain events occurring. Imagine that the Starship Enterprise receives a distress signal from a planet that is calling for help. Spock would say something like, “Captain, may I remind you that if we approach this planet any further, there is a 37.9 percent chance that we too, will be pulled into this planet’s orbit and we will be destroyed along with the planet.” McCoy, his nemesis and Emotional Mind, would say, “Captain, please, think of the species on the planet. What if this was us and we needed help? Captain, why else are we here then? Our mission is to save others!” These two characters use verbal techniques to touch both the sensible and emotional side of Captain Kirk. Captain Kirk is the Wise Mind of the show (well, sometimes) in that he has to take information from both sides of reasoning and quickly make decisions that will either save or not save others.

We use this type of Wise Mind in our everyday functioning—something as easy as having to make the decision of whether we speed while driving or not, or what purchases we make, or even how we speak and communicate with others. In Wise Mind, we teach ourselves to ask a series of questions that after much practice, we hopefully become better at and more automatic at doing. When someone with a brain injury suffers with irritability and anger outbursts, they may have to learn how to step away from a situation, use a technique to calm themselves down, and then talk themselves through the steps of reasoning in order to “wisely” discuss their points. This technique can help anyone, brain injury or not, deal with everyday situations. BICS teaches individuals specific techniques in how to use Wise Mind.

Recommended Reading

Brain Injury Coping Skills: A support and education program for adults with brain injury and their caregivers

By Samantha Backhaus, Ph.D. and Summer Ibarra, M.A.





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