A values-based therapy helps youth with chronic pain embrace life

By Louise Kinross

It's hard to separate out physical and emotional pain. That's because "pain is always physical and emotional, and happens in the body and brain," says Dr. Brittany Rosenbloom, a clinical psychologist doing post-doctoral research at The Hospital for Sick Children (SickKids) in Toronto. Brittany gave a fascinating Paediatric Project ECHO talk recently about using Acceptance and Commitment Therapy (ACT) with children and teens with chronic pain. We spoke about how ACT can help this population.

BLOOM: What is a simple way of understanding ACT?

Dr. Brittany Rosenbloom: At its core, ACT is about behaviour change and making moves—[that's why] ACT is pronounced as 'act' not A-C-T. It's behaviour therapy guided by values, and basically we use what's important to the individual to help guide their behaviour. We evaluate who and what matters to them, so they can move towards who and what matters. 

Part of that is accepting what is out of your personal control, and committing to taking action with what is in your control. The key goal is to build a really rich, full, meaningful life.

We use different tools and strategies to help us get there. There's a lot of mindfulness, to learn how to deal with pain, thoughts, feelings and memories, so they have less of an impact on an individual. What matters to the patient is what inspires the change.

BLOOM: How did you get interested in studying ACT?

Dr. Brittany Rosenbloom: Through my training I've had snippets of experiences with ACT, but it was when I was doing a practicum at Toronto General Hospital in their transitional pain service that I found it to be so incredibly effective. I was under the supervision of Dr. Aliza Weinrib, who developed an ACT-based program for treating adults with chronic, post-surgical pain. Every patient I worked with was so willing to participate in this type of therapy, and it was a very palatable way of creating behaviour change.

BLOOM: Does this kind of post-surgical pain go away after a certain amount of time?

Dr. Brittany Rosenbloom: Some folks I worked with at Toronto General Hospital didn't develop chronic pain, but a subset, depending on the type of surgery and how they recovered, did.

I also trained in the chronic pain clinics at SickKids and at London Health Sciences Centre. For children and youth, which is my main area of expertise, about 20 per cent of kids undergoing major surgery will develop chronic pain. 

BLOOM: In your workshop, you noted that pain has physical and emotional components. Can you explain?

Dr. Brittany Rosenbloom: By definition the International Association for the Study of Pain, which is our gold standard, defines pain as always physical and emotional. They say it's an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage. 

Pain is the way we process sensory information and the context in which it happens, and it's often linked with depression and anxiety, so we need to treat both pain and mental health.

BLOOM: What comes first? Is it possible that an emotional loss leads to physical pain?

Dr. Brittany Rosenbloom: It's a very complicated process to disentangle what comes first. We have so much literature to show how involved the brain is in processing pain, and one of the key things I'm interested in is it always involves the limbic system—that's our 'fear central.' When we're feeling pain, this fires around various areas of the brain, and we plan what we're going to do about the pain.

I heard an interesting case study of a worker on a construction site who was using a nail gun and it accidentally shot through his boot where his toes were. He was having a body and mind experience of being in great pain, and he was taken to hospital for help. They x-rayed his foot and found the nail had gone right between his toes, and hadn't touched any tissue. So there was no physical damage, but he experienced it as hurting a lot.

There is a body of literature looking at people who have adverse or traumatic childhood experiences. Did those experiences happen first, and then the chronic pain happens? Or did the chronic pain happen first, and traumatic events caused it to be maintained? There was a systematic review published a year ago looking at the interconnection between what we would consider really scary or awful, and how it impacts the development of chronic pain.

BLOOM: In your workshop you mentioned that the emotional and physical parts of pain result in 'stuck loops.' What are those?

Dr. Brittany Rosenbloom: A stuck loop is when you're feeling something unpleasant—physical pain, emotions or memories—and you're making moves away from what hurts. Everything you do is to try to get away from what's hurting.

Let's say a child has chronic pain in a lower limb. They might rest or stay in bed. But when you're immobile for long periods of time, that might increase the pain. Also, lying down and resting may lead to feelings of isolation. So maybe to escape the pain and feelings of isolation, they take another away move by watching more television. That may lead to sadness as they recognize they're missing out on hanging out with friends or going to the mall or playing a board game with their parents.

The more you try to avoid the pain, the worse it gets.

BLOOM: Why can ACT be useful for young people with chronic pain?

Dr. Brittany Rosenbloom: I always go to the literature, and we have evidence that it's effective in person and virtually. There are three systematic reviews that analyzed clinical trials and found it effective for treating chronic pain. This is a meta-analysis of one of them. 

I also find on a personal level that ACT is really engaging for adolescents because there are a lot of hands-on exercises to try to find out what works for a patient. I've noticed that kids light up when we're doing this work together. The values-based work is the motivation to inspire change.

BLOOM: In your workshop you talked about six processes of ACT. 

Dr. Brittany Rosenbloom: The goal is to create a psychologically flexible mind, and there are six ways to build it.

The first is to have contact with the present moment. The opposite of that would be a child who's stuck in the past or future. Let's say they got an ankle injury from sports and can't play and they're telling themselves 'I'll never be sporty again' and aren't able to pay attention to the here and now.

The next process is acceptance and being open to the emotions going on inside you. We all have so many different emotions every day. Let's say you're feeling dread about doing an assignment. Acceptance would be 'I'm afraid to start that task, and I'll look at my values and if it's important to me, I'll put the time and effort into it.' The opposite would be trying to avoid the dread by pushing it down and maybe you don't end up doing the task at all.

Then there's defusion. It's watching your thinking and trying to take a step back from your thoughts. It  might be saying 'I notice I'm having the thought that this task is huge and I'm never going to finish it.' Noticing that thought can help us feel like it's controlling our behaviour less. The opposite would be when you're holding on really tightly to thoughts as complete facts that dictate what you do. You might be fused to the thought 'This is impossible.'

The fourth process is 'self as context.' It's how we describe or identify ourselves, and how tightly we hold on to stories about ourselves. Let's say you have an adolescent who is fiercely independent. That can be great, because they can do things for themselves. But when you have chronic pain, you need to be able to ask for help. For example, you might need to ask for a note to be able to take breaks in class, so you can stand up and walk around or do stretches. But an adolescent who is really attached to being independent won't ask for the note. They'll say 'I'm going to have pain.'

Values is the fifth process. This is knowing what matters in your life. The opposite of that would be having a vague idea of what's important to you but nothing tangible, and nothing written down. Maybe a student will say 'Getting good grades is important,' but we need to go a step further to look at what it is about grades that's important. Maybe they'll say 'I want to keep learning in my life so I can go to college or university.' Or 'I'm really interested in how things work and I'd like to go into engineering.' That would take you to the value of wanting to be a learner.

The last process is committed action. It means doing what it takes to move towards what matters. If you're not doing anything, that is unworkable action.

BLOOM: What ACT exercises do youth tell you they like the most, or find most helpful?

Dr. Brittany Rosenbloom: It totally depends on the patient. If we really need to work on avoidance, mindfulness is the place to go.

BLOOM: I think you talked about putting your thoughts on leaves and imagining them flowing down a stream.

Dr. Brittany Rosenbloom: With leaves on a stream, a mindfulness exercise, you're seeing the ebbs and flows of thoughts. You might put a thought on a leaf and it might get stuck on a rock floating down a stream. So maybe you just watch the water move around it. Eventually maybe it floats away. You play with thoughts in a way that makes them less scary and controlling.

If a youth has sticky thoughts, perhaps they're fused to the idea 'This pain will never go away.' We might write the thought out, or put it in bubble letters, or do colourful things to make it less scary.

One of the exercises adolescents love doing is value cards sort. You sort values into very important, mostly important, a little important and not important, and you work with the ones that are very and mostly important. You use them as a guide to make decisions and change behaviour.

Adolescents like thinking about what's important to them as it helps them understand who they are. For example, if an adolescent feels deeply about the environment and wants to be a vegetarian, it helps motivate their behaviour. When we have three to four core values, they can try them on for size. Let's say they're really into the environment, but chronic pain means they can't go to a protest because they can't stand for a long period of time. What are other ways they can commit to this value? Can they read a blog post by an environmentalist? 

BLOOM: What changes do you see in patients using ACT?

Dr. Brittany Rosenbloom: When it comes to chronic pain, I see children, teens and adults doing more of what matters to them. The pain intensity may not change in our work together, but they're living a fuller and richer life. 

Maybe you have a child or teen who doesn't want to go to school or spend time with family and they're watching five hours of television in the evening. Maybe the change is that they spend four hours watching television and spend one hour eating dinner at the table with family. We fully applaud and high-five them for small changes. When you're dealing with chronic pain it's hard to make big sweeping changes, but making little changes over the course of the day can be really helpful.

Maybe a youth isn't going to school but they go for a half-day. We can build them up to do more and more over time so that they can see that they can do it. And they're motivated to do it, as they have tools and strategies for coping with pain, thoughts, feelings and memories. 

With pain management it's always a three-pronged approach that involves psychology, physical therapy, to get the kids moving in a safe way, and medication, which is prescribed by a physician.

BLOOM: As a clinician, what emotions come when working with children and teens with chronic pain?

Dr. Brittany Rosenbloom: It depends on who I'm working with. First off, I feel an immense amount of empathy for kids, because by the time they're seeing me, they have usually struggled for quite some time. When they're telling me their story I feel so much empathy for them.

All healthcare providers are trained in coping with transference, and I, too, have had that training. So, for example, if a child or adolescent is severely depressed and really feeling alone, I need to take a deep breath after I've had a therapy session with them and give myself a chance to decompress. I may be worried about a youth. I use a lot of the skills I teach my kids in ACT with myself. So I might do some mindfulness between sessions. I schedule my sessions for 50 minutes so I have 10 minutes to write the notes and to use ACT on myself.

Of course the work can be very rewarding when you see a patient who is further along in their progress and they're doing really cool things.

At SickKids we have an amazing team that assists in the treatment of chronic pain and I may run into the physiotherapist and describe an exercise I'm trying with a patient and they will say 'That's amazing, we're doing a physical exercise that will help bring the kid on board.' 

We have team consultations if we're feeling stuck with something, and hearing someone else's perspective is really useful. Working with the team is really uplifting.

BLOOM: Do you do anything else to manage stress?

Dr. Brittany Rosenbloom: I exercise almost every day. I'm a runner, though I'm very slow. I do an assortment of things. I do a group workout three times a week, and then twice a week I run and I also do yoga. 

BLOOM: Do you think ACT could benefit young people with chronic conditions or disabilities?

Dr. Brittany Rosenbloom: The short answer is yes because ACT is trans-diagnostic. It's designed for the human experience vs. a specific diagnosis.

I have used ACT with adolescents with cerebral palsy and chronic pain concerns and I found it quite effective. I think this is definitely an area where we can do research. Everyone has things that inspire them and are important to them, and those are huge for making small changes. It's all about finding what works for the person. Moving towards what's important might be something you do one minute of the day or an hour of the day.

BLOOM: I think ACT could be really helpful for children with disabilities and their parents because it isn't focused on cure.

Dr. Brittany Rosenbloom: If you're really hoping something is going to change, and realistically it's not going to change, you're in this tug of war with something. What I tell patients is to drop the rope and accept what is not going to change, and work with what can change. Accept the new normal. 

BLOOM: You mentioned in your workshop that cognitive behavioral therapy (CBT) is often used to treat chronic pain. When do you use CBT and when do you use ACT?

Dr. Brittany Rosenbloom: There's a lot of evidence to support using CBT for chronic pain. I use it especially for kids under the age of 12. When I make the decision it's in part based on age and developmental progress. You might find a 10-year-old who is clear on their values, but many 10-year-olds haven't thought about it. Patients in the adolescent range are often interested in values. It depends where they are developmentally. If a child comes to the chronic pain clinic at SickKids after having done a lot of CBT and they're feeling very stuck, that's the time to shake it up and try something like ACT.

In Brittany's workshop, she recommended these books for clinicians: ACT Made Simple; The ACT Matrix; and ACT for Adolescents. Books about using ACT for the layperson include The Joy of Parenting and Get Out of Your Mind and Into Your Life. Like this interview? Sign up for our monthly BLOOM e-letter. You'll get family stories and expert advice on raising children with disabilities; interviews with activists, clinicians and researchers; and disability news.