How do you help families develop an understanding of spinal cord injury?

When helping families understand for me, it really depends on if we're talking about a child who is injured or an adult who is injured. With children it's so complicated because of the development stage, so I really work with the parents and the families to appreciate where the child is. A three-year-old is going to respond very differently to an injury and they're going to focus on the parents' interaction, the caregiver's response, the family's response to the injury, and look to them for "Am I okay?" Then as a child gets older, it becomes much more internal. Seven-year-olds are going to more likely to look at depression and become a little more worried and see things differently. When I'm dealing with family members of an adult with a spinal cord injury, I take lots of steps to help them prepare. I encourage them to be advocates and not hesitate at all to ask any questions. We want questions, but more often than not, people really are afraid to ask questions of their physicians or therapists. It's understandable, we're scared of the reality of what we might hear, and so I really try to help them to try to push past that and don't be afraid. I love the person who is going to be the neurotic parent or the neurotic caregiver of their family member because I'd rather they ask the silly questions, and get them answered and get some information about what's really going on. Those are parents, family members are really we really want to hear.

I help families understand this injury in the context of you may feel like everything in your life has changed, and there is a lot that has changed, and a lot of loss to be felt. But there are a lot of core things about whom this person is and who you are that are unchanged. I think trying to find ways of focusing on the things that are not changed while you’re letting yourself go through the grieving process is really an important piece.

You have to take into consideration the dynamics of the family, their ethnicity, their strengths and weaknesses, their history and what they bring to the table. Sometimes a family will consist of one person, two—I had 18 one time and they told me that family is all of us. We had to get more chairs but that was about family and that taught me. A lot of times they’ll tell you that they get it and you’ll hear that they don’t. And sometimes they tell you, “I’m not ready to get it.” What comes to mind is a teenager, who had a spine injury but also a mild traumatic brain injury, and people were talking about all of the losses. And one of the things that the testing showed was that she had intelligence in the average range. So people were pleased because average range—you can function, do well, and then you can learn, and do the rehab and move on. When I spoke with the father and mother, they told me, “That’s great.” But this was a person who was high-honors, this was a person that was geared to getting a scholarship to one of the leading universities in the country, this was a person who had all the ambitions of making a difference in this world. So when you say that she’s in the average range now, we’re thankful but that’s not where we are. And at that moment, I had to understand where they were, and then to say, “Yes I understand that,” and how we work together to see how that was. The upshot of that is that she gained a lot of other skills.

When a family member approaches me about a brand-new injury, similar to the patient, I want to find out what they already know and meet them where they’re at in the process. I would like to learn how you learn best, and what you’re really the most worried about and making sure that I’m meeting those needs. If it’s just forming rapport with staff to get a better understanding, if it’s written materials, if it’s videos—we’ll do whatever we can to meet you wherever you’re at with your learning needs and your personal needs to fully understand that. Sometimes it’s very helpful to include the whole team in these conversations as well, so maybe we’ll select a couple different people where you’re having questions around to make sure that they’re fully addressed from different angles. And that we’re being very mindful about what’s the most important to you in that moment.

We try to have the family learn from, in our case their veteran, the injured person. We do provide written materials for families and videos that they can watch to see how people can adapt. We encourage families to see their family member in rehabilitation so they can watch the progress, and also be realistic about expectations. Families though often need therapy; they need counseling to readjust because it’s a big loss for them and their own expectations. Also, they need to take on more responsibility, they need to help with things that that injured person can’t do. 

The patient with the injury accommodates the injury, tolerates the injury or appreciates the injury at a more rapid rate than do family members. It’s very important to understand readiness and the narrative of the family. It’s not always consistent either; some people are more ready at certain times than others.