Life after a traumatic brain injury resulting from a car accident, a bad fall or a neurodegenerative disease changes a person forever. But the injury doesn't solely affect the survivor – the lives of their spouse or partner and other family members often are also turned inside out.
Virginia Commonwealth University experts in rehabilitation psychology and neuropsychology, such as Jeffrey Kreutzer, Ph.D.,and his team, are among the frontrunners in the country leading research and clinical services focused on helping survivors, couples and families reclaim their sense of self-value and worth – thereby helping them build a life that they can feel good about living.
Below, Kreutzer, the Rosa Schwarz Cifu Professor in Cancer Rehabilitation in the Department of Physical Medicine and Rehabilitation in the School of Medicine and director of the federally designated VCU Traumatic Brain Injury Model System of Care, discusses his work, the emotional side of TBI and his hopes for changing the lives of patients and families.
As a brain injury rehabilitation specialist, what is the focus of your research?
We focus on emotional adjustment after brain injury and other neurological disorders. Recently, we've been testing the efficacy of two interventions – one for individuals that is focused on building resilience and improving coping. And the other intervention we are evaluating is the therapeutic couples intervention (TCI), focused on rebuilding couples' relationships following TBI.
Our focus on these specific clinical interventions officially began when we received grant funding from the National Institute on Disability and Rehabilitation Research in 2002. For more than 10 years beforehand, we focused on investigating psychological adjustment following brain injury. Most of our early research focused on defining the challenges and problems of patients and their families.
What changes can a person who sustains a traumatic brain injury face?
Changes can be physical and emotional for survivors of a TBI. Physically there is often a rapid period of improvement that begins once people receive good quality medical care. There is a fairly rapid rate of physical recovery – for example, people who can't walk start to be able to walk; people who can't feed themselves relearn how to feed themselves. People may spend up to four weeks in the hospital in acute care and rehabilitation where they make important gains in physical functioning and daily living skills.
But the area that we're most interested in is emotional recovery which tends to take place in a two-, five- or 10-year period. Early on people really don't understand how their lives have been affected, nor do they understand the implications of the injury on their lives to be independent and work, or be successful at school. It takes a period of time for people to begin to understand some of the problems they may have in the long-term. Consider memory, attention, concentration – these can be adversely and permanently affected. They recognize that their lives will never be the same, and their skills will never be the same. After six to 12 months, many people go through a period of depression and anxiety.
Studies we did almost 10 years ago at VCU suggest that a large proportion (e.g., 40 – 50 percent) of people who have a moderate to severe brain injury will experience a depressive disorder within the first one to three years post-injury.
So it's accumulative unawareness, there is a period of insight into the long-term implications of the injury which are typically negative, and then there's a period of adjustment that we can facilitate as counselors and psychotherapists.
What changes occur in family and couples' relationships after a TBI?
One of the things that we have found is that the injury not only has impact on the person that has been injured, but it also has impact on the family/spouses, as well. Family members are often confused because the personalities and abilities of the injured person are changed dramatically.
A lot of family members report that they are living with a stranger, a phenomenon known as ambiguous loss. Some wives report that they are married but they don't have a husband. The changes in responsibilities – for example, driving the patient back and forth from appointments, and financial changes (a lot of people lose their homes because they can't pay their rent or mortgage) – is a serious long-term strain on the family and marriages.
There was speculation for a long period of time that somewhere between 50-75 percent of marriages of people who have had a brain injury ended in divorce. We tested that idea by doing research here in Richmond and found that the divorce rate is less than 20 percent. The divorce rate for couples after brain injury seems to be significantly lower than the divorce rate for the general population.
When we interviewed uninjured spouses and asked them why they have stayed married, we discovered a variety of reasons – for some it was guilt; others, it was a sense of obligation; and for some it was unquestioning love.
We are concerned about the relationships where people stay together, but don't communicate about important topics like feelings, or sense of loss. People stay together, but the quality of their marriage can be quite poor.
How do you/your team work to help individuals and families overcome their challenges following a traumatic brain injury?
So far we have published several studies on an intervention we've developed for families and we have just begun looking at this intervention in couples. The intervention has three components. The first is an educational component where we teach people about the typical effects of brain injury; then we talk about how long injury-related changes may occur; and we talk about how the injury affects the family and not just the person who has been injured.
Next, we work on skill building. Think of communication, problem-solving, goal-setting and managing intense emotions as skills – we teach people how to manage anger, many of these people have anger and irritability issues that adversely affect relationships. Other areas involve depression, guilt, anger – we teach them how to control those emotions the same way you teach people other skills. We teach them how to solve problems and manage them effectively and efficiently; we also teach people how to set reasonable goals.
The third component, and perhaps the most traditional in our intervention approach, is psychological support where we listen attentively to people's concerns and fears, offer them encouragement and support and help them to see the positive where they can in their specific situation.
You have developed marriage counseling techniques tailored to couples dealing with brain injuries. What does this entail?
The basic framework of our technique is skill-building, education and psychological support. It means having a series of structured meetings with specially trained counselor or psychologists. Traditionally, this form of therapy has been for couples – but instead of working with just one person we will work with a couple or the family as a whole.
We've built a curriculum for couples called therapeutic couples intervention, or TCI, which offers a structured foundation for having a good relationship, as opposed to traditional therapy where patients discuss one issue to another issue.
Our belief is that participating in TCI has curative and preventative effects (so people may not develop certain problems if they go through this curriculum).
We cover several topics including: effects of brain injury on survivor, partner, and couples; healthy communication and managing stress; setting goals and solving problems; rebuilding intimacy, bridges and strategies for effective parenting; and strategies for optimal recovery.
Generally, are families open to this form of therapy – being included alongside their survivor?
Most families are receptive. It doesn't take much effort to convince the family or couples that their lives have been altered. There's almost a sigh of relief that a lot of people have that there's a professional that understands their situation.
The system of care is set up to address the medical/physical needs of these patients (teaching survivors how to talk, cook, get dressed, use a wheel chair etc.) – but often does not address emotional needs. Part of what we do is help the families recognize how their lives have been impacted by these events as well.
We help them understand that their reaction and emotions – grief, anxiety and hopelessness – are normal and natural.
Where do you see research in your field headed?
We are starting to see more consistency in the provision of services – more educational materials available that are better directed to families and couples. I hope to see more marriage and family therapists working with brain injury, and more providers who are comfortable providing the special kind of services that people with brain injury can benefit from.
Explore further: Mild traumatic brain injury can have lasting effects for families