What is quality of life after brain injury?

Many years ago I was very active in the research world. I spent many years publishing clinical research - the kind where the goal is to find new or better ways to help people with conditions they live with. One of my favourite areas of research was quality of life after brain injury. I even won a few awards for it, actually .

Now I decided to look at quality of life a little differently than it has been thought about historically. Most ways quality of life was measured was about what you could do, or perform, after an injury - like walk or talk. So the measurement and outcomes were about your ability to do things in the world. Research really wasn't asking anyone how they felt existing in the world. This made me wonder a lot about how we measure things in the world of science, health and wellbeing. I started to wonder, "does what we measure, matter?". So I went ahead and researched it to find out. 

And to add another layer of confusion to this particular onion, researchers also spent most of the time asking parents what they thought about their child or adolescent's quality of life. Not the child or adolescent themselves. I remember this happening in my own life as I grew up with Type 1 diabetes. I was diagnosed when I was three.

I will never forget sitting beside my dad in the diabetes clinic, about nine years old, when the intern who turned to my father and said, "So tell me about Ashley". My father looked at him squarely and said, "She's right here beside me. You can ask her about herself". And from that day on I often wondered if kids and teens ever had a chance to be asked questions that matter, and answer them themselves. 

Fast forward a few decades and I went ahead and did a PhD on the topic. My research wound up showing that how parents and youth feel after the brain injury is quite different - and in some cases, completely opposite! How we defined quality of life really mattered, too.  When we ask about wellbeing, or how we feel and find meaning, we are not asking about performance in the world, like going for a walk. I found out that for some of the youth I worked with, the brain injury gave them a sense of purpose and meaning. A rather enormous leap between what the parents thought, who were devastated by the assumption of a life altered for the worse owing to changes in physical ability. 

It turns out I wasn't the only one who thought what I found out was neat. I remember being rather shocked to be asked for an interview with MedicalResearch.com on the topic. 

When I was asked: "What should clinicians and patients take away from your report?"

I answered: "Adolescents know what matters to them – and this may not be what clinicians, or their tools, expect. The simple act of asking the adolescent how they are feeling and what matters to them – may be the most important step in identifying areas of relevance to adolescent quality of life post-injury.   This person-centered focus can serve to target meaningful interventions for adolescents as well guide the clinical and rehabilitative context".

This work has been so important to me and how I approach my work with clients, now as a clinical neuropsychologist, too. The goals belong to people. They are theirs. My job is to help get them on the path towards them.

We need to ask people what matters to them, and help them get to the goals they care about in life. 

Life is more than performance, or the ability to "do" a thing. 

Life has meaning beyond what we measure, and we must always ask first. 

Thanks for reading :)

- Dr. Di Battista, Ph.D., C. Psych.