Welcome back to the Healing Pain Podcast with Dr. Whitney Scott

We are bringing awareness to the important topic of stigma and chronic pain. People living with chronic pain are often stigmatized in healthcare settings, although they are not alone. Patients with various medical conditions, those with mental illness, people who use substances, people living with HIV, refugees, immigrants, even patients with poorly controlled diabetes can all be subjected to stigma. Here to discuss stigma and chronic pain is Dr. Whitney Scott. Whitney completed her PhD in Clinical Psychology at McGill University in Montreal, Canada. She is a post-Doctoral fellow in the Health Psychology Section within the Institute of Psychiatry, Psychology and Neuroscience at King’s College London. Her research focuses on psychosocial factors, including experiences of injustice and stigma related to functioning and quality of life in people with chronic pain.

Whitney also investigates psychological treatments such as acceptance and commitment therapy for people who live in chronic pain and she is finishing up a fellowship that developed and evaluated a version of an online act for people with HIV and neuropathic pain. This is an important topic for those living with chronic pain and for the practitioners who treat them. Whitney and I appreciate you tuning in and downloading this episode. If you want to continue the conversation, make sure to join The Integrative Pain Science Institute Community Facebook Page. You can find us at www.Facebook.com/groups/IPSICommunity. Let’s meet Dr. Whitney Scott and learn about stigma and chronic pain.

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The Stigma Of Chronic Pain With Dr. Whitney Scott

Whitney, welcome to the show. It’s an honor to have you.

Thank you so much for having me.

Whitney, tell us how you got interested in working and researching chronic pain and becoming a pain psychologist.

It’s something that I’ve been interested in for a long time. My personal background, my mom has lived with chronic pain for as long as I can remember. It’s always something I experienced and saw the impact of. When I was studying Psychology in my undergraduate degree at UBC, I came across a health psychology course and we had an assignment to write about psychosocial factors related to a chronic health condition. Some picked chronic pain given what I talked about. That got me fascinated about how it is something so seemingly a medical problem could have these profound psychosocial influences. I was quite lucky in that Kenneth Craig was at UBC in the department where I was studying. When it came time for our research project, I reached out to him. He was wonderfully supportive and got me hooked into pain psychology. He set me on a track for doing a PhD in the area.

Tell us where you are today and where you’re working?

I’m based at King’s College London in the Health Psychology section, which is within the Institute of Psychiatry, Psychology and Neuroscience. I have a split position where I’m also based on the input pain unit at St. Thomas Hospital. I do a mixture of research and clinical work.

How is it wearing two hats, taking one-off sometimes and putting the other one on? Do they relate to each other or a tiny bit to manage?

It is definitely quite busy, but I’m fortunate in the sense that positions like these are quite rare. In my case, my research very much feeds into the clinical work that I do and vice versa. The nice thing is that research is very much long-term. Setting up and running a study takes a long time. Whereas, clinical work is quite immediate. You almost know immediately or very soon after if something you’ve done has been impactful or not. Having that long versus short-term feedback is quite nice in a sense. There are lots of synergies that when I go to the clinic, we have a wonderful team of psychologists, physios, nurses, OTs and doctors. They’re constantly coming up with ideas that are interesting for research as well as seeing patients that inspire new ideas. Obviously, the research can feedback into the clinical work. It all marries out quite nicely.

You mentioned that those positions are rare. Congratulations on landing that. Are they rare in psychology in general or is it when you mentioned that more of the chronic pain space?

I can only speak from my experience but in psychology in general, it may be a context thing as well being in the US, UK versus Canada. In general, people tend to go more research or more clinical because both positions are quite demanding. It requires the institution to come together and carve up time for both I think expecting a clinician to do research on the side of an immensely busy day already. That’s something that the infrastructure and support needs to be in place for. In that regard, that’s why it can be quite difficult to do both of those things.

Your research work has focused on the areas of injustice and chronic pain, acceptance and commitment therapy for chronic pain, pain management and the HIV population. How did you specifically become interested in working with stigma at first?

In my head, it seems like a logical sequence of events, but it requires a bit of an overview of what I’ve done. In my PhD, I looked at this concept in collaboration with my supervisor, Mick Sullivan at McGill. He coined this perceived injustice or we might call it injustice experiences. It’s in the sense that someone living with pain, we did the context after an injury that they perceive pain and injury-related losses as significant and unfair. In some cases, there might be someone else to blame for those losses. We think of the case as a whiplash injury following the car accident that the other driver might be a clear source of blame. Something also came out in the questionnaire that Mick developed where a few items around, “No one understands the severity of my illness or no one’s taking my illness seriously.”

That mapped onto another construct that we didn’t directly measure or assess, but invalidation and drawing these threads together in the sense that people, when pain is medically unexplained or it doesn’t have a clear medical cause. That’s a situation in which others might perceive that maybe the pain isn’t as severe as someone might be indicating. All of these kinds of constructs came together in my interest and then thinking about what’s actually not measured by some of these constructs are things like social exclusion, embarrassment or shame. If you look at the injustice measure, there’s not anything about embarrassment or shame or others actively excluding the person from social scenarios, which is tapped more in by stigma-related measures.

To put the story together, after my PhD, I was interested in how can people respond to adversity in a way that they still appreciate what they want out of life and where they can make a life that’s meaningful alongside the real challenges that come with pain. That’s how I got connected with Mick doing work on Acceptance and Commitment Therapy as we’ve done a number of studies looking at in general clinic procedures, how do people do after the course of acceptance and commitment therapy through a multi-disciplinary team. Then my fellowship that I’m finishing up, looked at applying Acceptance and Commitment Therapy, specifically deliver an online app for people with HIV and neuropathic pain, which was a population that has high rates of pain and pain impact. Typically, the research and studies have looked at this from a biomedical viewpoint because they assume that the pain was caused by HIV. Therefore, having medications and that’s the end of the story.

There have been a few small trials, but there have been issues with recruitment and retention and things like that. To wind this whole story up is you can’t study HIV without understanding stigma. It has been still fundamental to understanding how HIV has affected people psychologically and managing stigma has been important to curtail the epidemic and ensure people have access to appropriate treatment. All those things came together in looking at how stigma is relevant both for HIV and pain, as well as stigma might be relevant for chronic pain in general.

I want to give people an overview or a little taste of some of Whitney’s research articles. You can google these and find these on PubMed. Here’s one, Psychosocial Factors Associated With Persistent Pain In People With HIV: A Systematic Review And Meta-Analysis, which was in August 2018 Pain Journal. Measuring Stigma in Chronic Pain, you can find that in the 2019 Journal of Pain. Injustice Appraisal, But Not Pain Catastrophizing, Mediates the Relationship Between Perceived Ethnic Discrimination and Depression and Disability in Low Back Pain in September 2019 in The Journal of Pain and an interesting one, Change in Change in Fatigue inin Acceptance and Commitment Therapy-Based Treatment for Chronic Pain and Its Association with Enhanced Psychological Flexibility, again September of 2019, The Journal of Pain in Systematic Reviews. Obviously, for a relatively new researcher, it is an interesting and deep work, which is informing more research as well as clinical practice. Do we have a good measure for measuring stigma in research and/or clinical practice?

One of the first thing you mentioned was the preliminary attempt for us to evaluate the psychometric properties of a measure. The measure is called the stigma scale for chronic illness. It’s something that was developed by other research groups outside of the field of pain. It was initially validated in the context of neurological conditions like Parkinson’s and MS. The nice thing about it was it briefly measure, which we always need for clinical work. We have so much to ask people. We can’t be burdening them with many super long measures that were reasonably well-validated in neurological samples. We decided to take the same questionnaire to see how the psychometrics work in the chronic pain sample. We left the introduction where it talks about general illness the same so it would be comparable.

The other nice thing about this measure is that it measures both of what’s called an active and internalized stigma. An active stigma is how other people treat a person who’s perceived to have negative attributes or something like pain. How do others treat the person in pain? How does the person in pain perceive others to treat them? Internalized stigma is when a person comes to believe negative attitudes that others hold about themselves. They start leaving that negative attribute, which is true. In a really efficient measure, we can talk about both things. When we did the second metric analyses, it shows that the data or the items are reliable. The measure associated with things we would expect it to like injustice, appraisals or that injustice measure as well as core outcomes of interest for pain. Things like pain-related interference and depression.

We did that in a sample of 300 people, so that’s preliminary. We also looked in the context of the infant pain management program at the service that I work at. We offer an interdisciplinary Acceptance and Commitment Therapy-based program. We looked, and this was entirely exploratory, out with a potential chain from pre to post-treatment to see if treatment might at all be targeting that. Obviously, this is observational, we can’t say for sure but what was interesting was when we looked at a total score across both inactive and internalized stigma, there was no change. You might assume that in a group-based treatment where other people have pain, where you’re learning to open up to the difficulties of pain that might either provide some validation or it might impact on stigma itself, at least internalized stigma. When we did look at the internalized subscale, we did see a small amount of change, but enacted stigma didn’t change at all.

That’s an interesting question. We need to be looking more broadly at how we target stigma. Looking at from the research side of things, this is a measure that we could look at maybe correlating stigma with pain outcomes as well as maybe exploring treatment change on stigma. I think it’s maybe a little bit too early to start using the measure in clinical practice. For example, we don’t have things like clinically meaningful score yet. I’m always of the opinion screening for something is only useful if you have an intervention to then target it. There would be no sense giving this measure to people clinically if you then don’t know how to intervene.

You mentioned that the research that you did around stigma and that self-report measure was done in the context of a multidisciplinary act informed pain center basically. A lot of people might be wondering. It makes sense that treating stigma is definitely the place of a psychologist. How would the other members of the team be able to potentially influence the outcomes of that stigma, that perceived injustice through the context of multidisciplinary care?

Let’s pick apart something here. I always think the difficulty with self-report measures where we’re looking at people’s experiences is because we put that word perceived in. That’s all we can have and we label measures as perceived injustice or perceived stigma. We also have to fundamentally recognize that people’s perceptions are often rooted in things that are happening in the world around them, at least to some degree to clarify that it’s not only the onus on the individual, but there are these systemic issues that are maybe feeding into that. Whose responsibility is it to address stigma? Psychologists may be well placed to talk about the impact and you might help foster things like self-compassion, but I absolutely don’t think that’s only the realm of the psychologist. Every single member of the healthcare team can very much help in various ways to mitigate or reduce stigma. In some cases, looking at the language that we’re using, I’m not framing symptoms. For example, as a medically unexplained or psychogenic is something that I sometimes see in referral letters. That in itself is a very stigmatizing term.

Our physiotherapy and occupational therapy team, they very much help people identify what’s important to them, activities or movements they want to do. They will explore what’s showing up for people. Often what’s showing up, for example, if I don’t want to use public transportation or I’m afraid to be on public transportation, there’s a worry about reinjury and pain increase. Often, there’s a worry about what others are going to think if I need to ask them for a seat or other people are staring at me because I walked differently. All members of the healthcare team are very well-suited and skilled to help people address stigma, at least the internalized stigma and maybe even helping them to speak out against inactive stigma and call for that societal change.

Is ACT is the ideal vehicle to be targeting stigma and injustice within that multidisciplinary team or might something like compassion-focused therapy serve better for this particular population?

I don’t think it is staged where we can say one approach is better than the other. There are theoretical conceptual arguments that you might suggest that one approach would be well-suited, but we don’t have the data to say one is better. We know from psychotherapy research in general, what pans out is most bonafide treatments would be suitable. That being said, act in a sense that it recognizes, and I think it’s fundamentally validating. It’s not saying people are thinking unhelpfully or rationally or that they need to change their thoughts before they can change their actions. It’s saying, “This stuff might be very difficult. What are the choices that you want to make so your life can be more the way you want it to be? What will you bring along with you on that journey?” Part of this might be saying, “I’m having this thought that’s well-rooted in my experience that this is unfair, that people are treating me poorly. What do I want to make of my life, nonetheless? Does it mean that it’s meaningful to me to speak out against this and try and make change? Do I focus my directions elsewhere and not get caught up in this?”

From a clinical point of view, that has always sat better with me and perhaps other approaches that try and weigh up the helpfulness of the belief in the pros and cons of that belief. Similarly, some compassion focused therapy dovetails quite nicely with ACT in bringing that sense of kindness to oneself even though that might be a difficult thing to do. Even though the world is not necessarily a kind place. I think these approaches definitely require more investigation and see how we can foster the processes that might mitigate the impact of stigma.

You started to dance around the hexaflex a little bit there. Talking about acceptance in some of the work, you started to compare a little bit between cognitive fusion and thought restructuring, which is more of a traditional CBT construct. You started talking about compassion, which there are six processes in ACT and some people mentioned this seventh unspoken about the process, which is compassion. How does a protocol of ACT infused compassion into the treatment?

We need more strict protocols for something like a randomized controlled trial. That ACT in itself would be less than a protocol-driven therapy than a process-driven therapy. In that sense, if you’re looking in real-world clinical practice, you might see two clinicians or two clinics delivering ACT quite differently because we conceive of it as a strategy that’s going to foster psychological flexibility is an app strategy and that could look various different ways rather than maybe being quite rigid about you do X, Y and Z for example. Compassion definitely fits in the processes like openness of my thoughts and feelings. If I’m being judgmental towards myself, I can be open to those thoughts and feelings. Also in my values, I’m able to outline and I want to treat myself and others with kindness. I’m reflecting compassion within that. If we take from compassion-focused therapy, a lot of the exercises, in some ways they are fostering psychological flexibility as well. In that sense, they could be very much embedded within what we would be doing in ACT in any case.

There’s a lot of mindfulness in active courses, certain protocols use mindfulness. There’s an amount of perspective-taking which can hurt people with compassion. They’re all important parts of ACT as well. As you mentioned other types of psychological interventions, can you give us an example of either how a practitioner changed their approach or a patient that potentially use someone who was involved in multidisciplinary care, where obviously they started to change their view of either injustice or the stigma related to living with HIV?

It may be not so specific to the HIV context, although I will say, we’re doing a treatment trial looking at the feasibility of online ACT for HIV and in that, we do specifically have a session on stigma and self-compassion and how we relate those things with how we’ve dealt with it in the HIV context, more generally in the chronic pain context. I started my relationship with Input by observing one of their programs. I did a bit of a lab exchange during my PhD and I sat throughout the multidisciplinary program for three or four weeks watching. It’s always stuck with me. There was a participant in that program who he made fantastic improvements in his functioning and the activities he was doing. He said in the end, the thing that changed for him was that it didn’t matter what people thought. He used to be preoccupied that if he was doing more, people wouldn’t believe him, which is a fundamental thing in chronic pain. It’s an invisible illness.

How do you reconcile some of being an enormous pain and then increasing their activity. That in a sense is exactly what pain management does. For him, making space for the fact that other people may judge him and he can still work towards the things that he wanted to be doing. That was quite profound and how we can help people in their adaptations to some of the adversity that comes with pain, but perhaps we’ll talk about it. I’m still of the mind that I don’t think that’s enough. The onus is too much on the individual and we also need to start looking broader in society and how we tackle some of these stigmatizing and unfair treatments of people with pain and other conditions like HIV.

That’s very well said because within that bio-psycho-social amount, social is the one area that’s probably researched the least or we have interventions to help people. Specifically with the HIV population, they’ve been through decades of awareness of one being from a terminal disease to today, a disease where people are living longer. I think your work starts to shift the focus toward one where people can live that rich, full life even though they have some pain. What do you see is missing from the stigma as far as healthcare in general?

You’re absolutely right about how we conceptualize and study pain that the social aspect is very much missing. Maybe when we talk about the social, it somehow becomes individualized. We take a psychosocial construct like stigma and then we do an intervention at the individual level and then in some ways, wondering what hasn’t worked all that well. I think that a multifaceted approach to particularly something like stigma is something that is needed. Certainly, we can make games working with the individual. I question how durable and how big those games will be if these societal factors remain. In that sense, I think the HIV example is a good one because they had targeted everything from a multifaceted perspective. They’ve done so in a way that involves and engages people living with HIV.

There have been this grassroots ground-up movement, whereby people had to express enormous vulnerability and openness to share that they were living with HIV, so that other people felt okay and safe to do that as well. In doing that, they’ve fundamentally changed. There’s still a massive sickness stigma that comes with HIV, but they have fundamentally changed what it means to be living with HIV. That came from the ground up. As part of the HIV project that I’m working on, we have fantastic patient partners, one of them has by the name of Joe Josh. Within the HIV research world, there’s conclusive evidence that if you’re on antiretroviral therapy, if you’re virally suppressed, you cannot pass on the virus.

Joe and her colleagues have been championing this campaign, U=U, Undetectable Equals Untransmittable. That’s a grassroots thing. They’ve taken their voice and they’ve been spreading that far and wide. That’s the initiative in part. There are people in pain doing that no doubt as well, but I think there’s so much to learn from the HIV community and the world that’s been effective and things like they recognize the fundamental role that law and policy play in how people are stigmatized. Obviously, there are certain countries that criminalize gay marriage and all of that. Living with HIV means fundamentally different things in different countries because of their different policies. We also need to look at maybe in a less extreme way, but how certain policies like disability benefits policies will impact on someone living with chronic pain when they’re subject to quite demeaning reviews that don’t appreciate that pain fluctuates and that you can increase functioning alongside pain. That doesn’t mean that you’re no longer living with the condition and that you no longer need to support. This multi-pronged systems-level approach alongside the individual target for intervention.

I’ve been speaking with Whitney Scott, who’s a psychologist at King’s College London as well as a researcher. Whitney, thank you so much for joining us and sharing this important work around stigma in HIV. Please tell our readers how they can learn more about you and follow your work.

The easiest way is to check out my Twitter profile. My handle is @WhitneyJScott. On there, there’s a link to my King’s College London research profile that you can click on and see more of my research if you’re interested.

Make sure to share this episode out with your friends and family who are interested in the topic of stigma and HIV related to chronic pain. It’s an important topic that does not get enough airplay or research. I’m sure Whitney would appreciate you sharing that. I’m Dr. Joe Tatta. It’s been a pleasure spending this time with you and we’ll see you on the next episode.

Important Links:

• www.Facebook.com/groups/IPSICommunity
• Psychosocial Factors Associated With Persistent Pain In People With HIV: A Systematic Review And Meta-Analysis
• Measuring Stigma in Chronic Pain
• Injustice Appraisal, But Not Pain Catastrophizing, Mediates the Relationship Between Perceived Ethnic Discrimination and Depression and Disability in Low Back Pain
• Change in Change in Fatigue inin Acceptance and Commitment Therapy-Based Treatment for Chronic Pain and Its Association with Enhanced Psychological Flexibility
• @WhitneyJScott on Twitter
• King’s College London
• https://KCLPure.KCL.ac.uk/portal/whitney.scott.html
• https://integrativepainscienceinstitute.com/161download

About Dr. Whitney Scott

Dr. Whitney Scott completed her PhD in clinical psychology at McGill University in Montréal, Canada. She has been a postdoctoral fellow in the Health Psychology Section within the Institute of Psychiatry, Psychology & Neuroscience at King’s College London since 2014. Her research focuses on psychosocial factors, including experiences of injustice and stigma, related to functioning and quality of life in people with chronic pain. She also investigates psychological treatments, such as acceptance and commitment therapy (ACT), for people with chronic pain. She is finishing up a fellowship that developed and evaluated a version of online ACT for people with HIV and neuropathic pain. She has published over 50 articles in peer-reviewed journals. Her research has been funded by the International Association for the Study of Pain and the National Institute for Health Research. Whitney also works clinically at the INPUT Pain Unit at Guy’s and St Thomas’ NHS Foundation Trust in London, UK.