This is a part of the Hot Topic podcast series from the Model Systems Knowledge Translation Center on Relationships After TBI. Dr. Jeffrey S. Kreutzer discusses The Brain Injury Family Intervention Feelings Checklist.

To give you an example one of the things that happens a lot is families will spend a whole lot of time together and this is what I tell my families I say well, you spend a lot of time together what do you talk about? And what they’ll talk about quite easily is they’ll talk about the basketball play offs and they’ll talk about the baseball season just starting and they’ll talk about politics, although that can be a little bit dangerous at times, but they’ll talk about politics.

And, of course, it’s very easy to talk about the weather. So people will spend 24/7 together, but what they won’t talk about, and this is what I help my families understand is they may spend a lot of time together but when you talk to each of those people what you’ll find out is they all feel lonely and they all feel misunderstood. So how is it, and this was a clinical question for us, how is it that these people are spending so much time together, but they feel misunderstood?

And what we found is that they’re not communicating about important things. And what I mean by important things is their feelings. So, for example, we use questions, the tech people call collaborative, self examination. And what we do is we give the family a check list and it’s not filled out but it’s for them to fill out. We’ll give them a check list of feelings that are commonly expressed by people with brain injury and their families.

And it will have things on the check list; lonely, misunderstood, discouraged, hopeless, worried. And we’ll have each person in the family, we’ll give each one a clip board and a pencil and we’ll say to them we want to help you first understand what your feelings are. And we would just like you to take a moment and check off each of the feelings that characterizes or describes how you feel much of the time.

And everyone in the family will have their clipboard and their pencil, they’ll read their questions and then they’ll check off how they feel. And it may seem like it’s threatening to people, but it’s actually not. They’re thinking about how they feel, they’re checking off their checklist and it’s a private, it’s private. They have their own clipboard.

And then what we do is, and part of our process in meeting with families is they feel comfortable with us. We’ll ask each family member to describe which items they checked off. And so the mother might say I feel lonely, I feel misunderstood, I feel worried. And this is the first time perhaps that people have actually reflected on their feelings. They’ll talk about their son’s ability to move around in a wheelchair or get up and down steps.

Or his ability to remember to pay his bills. But they won’t talk about their ... each person won’t talk about their feelings. So using the questionnaire people will reflect on their feelings and then through the therapeutic process discuss and describe their feelings. And maybe the son will say mom, I didn’t know that you were worried too or the father will say to the mother I thought our son was depressed, but I didn’t know that you were really depressed.

And the father might check off anxious or worried. And the children will say well, dad, I thought you always feel confident. I didn’t know you were worried about our future also. And what we’re doing here is a process called normalization which is while these feelings, they may be very intense and they might be very frightening these feelings are common to families and individuals with brain injury; people are often feeling the same fear, the same worry, the same discouragement, especially soon after the injury.

And what we do is we have this group of people that they’re physically together, but they’re emotionally very distant. What we’ve done with this therapeutic process is to help them understand each other and it gives them something else to talk about, they’re experiencing the same discouragement, the same fear, the same anxiety. And while it may be a little bit painful, they’re beginning to understand that it’s normal. And part of what we do in the therapeutic process is to help the family talk to each other.

And once they understand how they’re feeling, they can more readily support themselves and more effectively support themselves.

Visit https://msktc.org/tbi and get the answers you need from experts who conduct innovative and high-quality research, provide patient care, and work to improve the health and overall quality of life for people with traumatic brain injury. That’s https://msktc.org/tbi.