We are back with our series Bridging the Gap! For each post, we are interviewing women in neuroscience to discuss the gaps, and the health inequalities, relating to different areas of neuroscience, as well as the exciting new research that is attempting to bridge these gaps. For our second article, we talked with Dr Katelynn Boerner, investigator at the British Columbia Children's Hospital Research Institute (BCCHR) and assistant professor in the department of Paediatrics at the University of British Columbia (UBC). In our interview, Dr Boerner shared with us her experience in working with gender diverse and neurodiverse young people with chronic pain and her opinions on the importance of creating more inclusive research practices.
'Neurodiverse and gender diverse young people...report, or experience, higher rates of chronic pain'
Chronic pain can seriously impact the everyday life of people affected by it. In children and young people, living in pain can significantly affect their social and emotional development. Whilst any young person can experience acute or chronic pain, certain populations, including neurodiverse and gender diverse young people, are observed to report, or experience higher rates of, chronic pain. However, these populations are also often under-represented in paediatric pain research, resulting in an inability to comprehensively understand their pain experience and a scarcity of truly effective and targeted treatments. It is being increasingly acknowledged, in this field, that there is an urgent requirement to improve our understanding of the complex pain experiences endured by these young people, with different identities, in order to provide better care.
With both her clinical work and research on chronic pain in autistic and gender diverse youth, Dr Katelynn Boerner advocates for the adoption of an intersectional approach in the field of paediatric pain. This involves taking into account the broader social context that contributes to putting these people at a higher risk of developing pain conditions; in doing so, she also works to make research more inclusive by creating, in an active collaboration with patients and their families, alternative methodologies.
Could you tell me a little bit about your background in science?
I did my PhD in clinical psychology at Dalhousie University in Halifax, Canada. I was really interested in learning how physical health and psychology intersect and that’s how I ended up in the field of paediatric pain, focusing on studying the experiences of young people who live with chronic and acute pain. After my PhD, I did a clinical internship at the Children’s Hospital of Eastern Ontario, Ottawa, and then moved to Vancouver to do two postdoc fellowships at BC Children’s Hospital and UBC. Through my experience as a clinician scientist, doing both research and providing clinical care, I started seeing these really big gaps between the kids and families that are represented in research and the kids and families that I was actually seeing in the clinic. It's really hard when I see a family in the clinic, and when I look at the research, to see how to best support them; I just don’t see anything that describes families that are in that particular situation. In this way, it’s hard to know how to provide evidence-based care. That’s why I became interested in health equality and why I started shifting my work towards trying to make research more accessible for the people that I was actually seeing in the clinic, to enable us to make better clinical decisions.
Once you started noticing these gaps, what inspired you to pursue research on chronic pain in gender-diverse and neurodiverse young people?
I was always interested in pain. Partially because pain is really everywhere; it is a feature of pretty much any disease or illness in childhood. Even ‘generally healthy’ children experience pain on a regular basis, so it’s really a topic that is relevant to everyone. During my PhD, I was investigating sex differences in pain. We know that, following puberty, we start seeing a disparity, with women and female-identifying people having higher rates of chronic pain, or being more impacted by chronic pain, and responding differently to treatments, compared to men and male-identifying people.
As a paediatric psychologist, I was interested in understanding what happens throughout the developmental trajectory, but the more I was looking at sex differences, the more I became “dissatisfied”. I was feeling that making binary comparisons was not telling the whole story. So, I started extending my perspective and became interested in looking at gender to understand some of the differences in pain experiences that we were observing, even between people with the same sex assigned at birth. Then it just sort of snowballed a bit from there. I realised that it was hard to look at just gender, without looking at other factors and other identities, so I became interested in understanding pain also in neurodiverse and autistic people. A lot of the young people that we support with pain, who are gender diverse, also identify as neurodiverse. I think the more I understood these young people’s experiences and lives, the more I realised I couldn’t just make a comparison between groups and feel like I actually knew the whole story: the more I learnt, the more I realised there are more and more layers of understanding pain, and knowing all those layers was essential to providing the best care.
So what projects are you working on at the moment?
I would say the overall theme of my projects is trying to understand how to support young people that often end up in the limitations sections of papers, or that are often excluded from the research, either explicitly or implicitly, because the methods are not accessible to them. I have a couple of streams of research looking at the experience of trans and gender diverse youth that live with chronic pain and some work looking at pain in autistic young people, studying both everyday pain experience and chronic pain experiences.
Then I have a project called “The Living Lab at Home '' that I co-lead with my postdoc mentor, Dr. Tim Oberlander. During the pandemic, we realised that we needed to find a different way to do research, as we couldn’t bring people into the lab. As we were looking at this, we started to think, “maybe, even once we can bring people into the lab, we shouldn’t. Maybe there are better ways of collecting data that actually reaches families where they are at”. The more we started talking about this idea to other researchers, clinicians and families, the more we realised that there are lots of families for whom coming in person to participate in a study is not accessible, because of where they live, the challenges they are dealing with, or the anxiety and trauma associated with coming to a clinical space. With the Living Lab at Home project, we have been exploring different ways to bring child health research into the community and make research methods accessible.
Some of the tools used to collect data in the community have been used for a long time, but have not been necessarily co-designed or developed with families, nor adapted to be used in populations that have different accessibility needs. So, the focus of the project is to come up with a core set of methods that have been developed with the families’ input, tried out with them, iterated and improved upon, and then to share these methods with other scientists, to use them with different research questions. I am trying to include more and more of these methods in my projects on gender diversity and neurodiversity in pain.
Are these projects done locally or would you like to do this research internationally?
Right now, most of our projects are conducted in the province where I am based, British Columbia, and only one is being done across Canada. We would love to bring our research further afield, but there are a lot of logistics we had to deal with, even with rolling out our research project across the country. It has been very interesting to think about, for example, how to bring research equipment to people, how to get it back, how to collect data from families who may live in areas where they don’t have great cell phone coverage or internet access. So it has definitely been challenging to try out our core set of research methods with teams that have different populations of interest and see what adaptations need to be made for different contexts, people, life circumstances and, most importantly, different systemic and structural inequalities that might represent a barrier in traditional research methodologies. It’s taking a lot of creativity and flexibility to think about how to do all that, and about alternative ways of conducting research, to make it more accessible. I have to say, a lot of the ideas about how to make this actually work have come from the families and the young people with lived experiences that we partnered with. They came up with a lot of the solutions, so I am fully convinced that we should never do any similar research project, or really any research at all, without hearing from the people who are actually going to be doing it and hopefully benefit from it.
Different circumstances in different places, for example here in the UK compared to there in Canada, can play a role in these projects, but would you say that there are common issues in research?
I think it’s one of those things that once you start to look for it, you see inequities everywhere in the way we do research. I have been thinking a lot lately about one of the tools we use in the ”Living Lab at Home”, the ecological momentary assessment, where we ask folks to fill out a couple of brief questionnaires a couple of times a day for a few weeks to get sort of micro-longitudinal data. It made us think a lot about the issue of “compliance”, a word that I don’t like to use because it implies a judgement. In a lot of studies, if a participant has “low compliance”, for instance if they don’t fill out enough questionnaire time points, then their data get excluded from the analysis. It certainly takes a lot of effort and resources to try to do things differently, but I feel like we are missing so much important information from folks that may have very legitimate reasons for why they can’t perfectly follow the research protocol. I think it is a problem if we end up excluding that data because it doesn’t conform to what we expect as researchers, or what we need statistically.
I definitely see similar issues in research on trans and gender diverse people with pain. We say these young people are not well represented in research, but then if you actually look, sometimes we do have data from them. It’s just that they get excluded because we don’t have a big enough sample size to put them in a category and allow us to do the statistics that we want. So I always feel this tension because I do very much believe in strong and rigorous research evidence, as well as the need to make clinical decisions on well conducted research. However, I think we need to realise that the traditional way of doing things is just not going to work for all situations for all people. I am getting so much more excited about the idea of pairing some of those traditional methods with alternative ways of doing things, to try and bring different sources of knowledge together and address some of these equity gaps that we see in research and then trickle down to clinical practice.
I can see how it can be difficult, from an analysis point of view, to handle data from people that, for one way or another, can't follow the protocol. In your projects, how do you deal with all these different cases?
Recently, I have been doing a lot of qualitative research which allows for incorporating different types and levels of data and accounts for diverse experiences and perspectives. In our “Living Lab at Home”, when something isn’t working or when we are not collecting enough data, rather than throwing it away, we ask ourselves why. Embedded in all of our research protocols now, there are opportunities to get feedback from people who participated in the studies. This way, even if the actual data that they gave us might not fit the analysis, we can get feedback about what got in the way and what we could do differently as a research team to facilitate their participation. I am so privileged to work with people who have way more statistical expertise than me and, together, we are constantly thinking about ways to structure the protocol in a way that we prioritise the data that we need and to engage with families before we even start collecting the data. We are always trying to figure out how to actually make it work and the different ways of telling the story, incorporating the data that we do have, because sometimes the absence of data is actually data itself.
Before, you mentioned you started noticing, during your clinical practice, a gap between the folks that participate in research and those that come to clinics. What contributes to such a gap?
A lot of it comes back to this issue of how we are conducting research. For example, the requirements to successfully complete a treatment through a randomised control trial are quite rigorous. I understand why that is, to try to isolate a specific factor and understand exactly what a treatment does for this particular issue. However, in doing that, a lot of folks are going to get excluded because of the “variance” they’d bring to the data with their profile. A really good example is neurodiversity. A lot of young people that live with chronic pain are neurodivergent, or autistic, and a lot of clinical protocols will exclude these young people. This might be because of the high amount of variability in the types of pain they experience, or maybe because they have different needs for how they communicate their pain.
We see something similar happening with medical conditions, or psychiatric conditions, that often end up not fitting the inclusion criteria in a clinical trial, again because they are trying to isolate what the impact of this treatment is on chronic pain. But the reality is in specialised pain clinic, it’s very rare to see a child where pain is the only thing they are dealing with – there are often other symptoms, diagnoses, or challenges. So it’s hard to tell a young person that has multiple co-occurring conditions whether a treatment, which hasn’t been tested on anybody with a similar experience, is going to work for them. There are certainly some good reasons to think it would work and it might need some adaptations, but we don’t have the research to help us make the decisions on what those adaptations should look like.
Similarly, you said that these young people, who are under-represented in research, are often also the ones experiencing higher rates of pain. Can you explain to us why that is?
We know that for people who are autistic or neurodivergent, there might be differences in the way pain is processed in their body and differences in the sensory and nervous system. Moreover, for a lot of young people, the discrimination against their identity - whether that is neurodiversity, gender diversity, race or socioeconomic status - can impact their health outcomes. Because they are living in a certain stressful situation, they are being discriminated against, they don’t have the same access to healthcare, or healthcare that seems safe for them to access - all of this is going to put them at a higher risk of developing a chronic pain condition, amongst other conditions.
I think one of the most important things that is happening in research right now is this increasing acknowledgement that, when it comes to populations that are “at risk”, there’s a whole bunch of systems that work against this person and that put them at risk. It’s such an important message that the young person themselves, and their identity, are not the problem. This ‘damage-centred’ view has been the narrative for a long time and has taken over in research, but I am glad to see a shift happening to understand the systems and structures that contribute to putting these young people at risk in the first place. I hope that we continue this discourse and incorporate it more and more into our research, not only to understand what kind of care we can provide for the individual person, but also how we can act on some of the bigger factors that lead to the higher risk.
When these factors are neglected, how would you describe the consequences both on the clinical and research practices?
If you want to study a specific treatment and don’t take those factors into account, you might not actually be able to get an understanding of why some treatments don’t work. There are a lot of good treatments out there and we are asking people to use them and apply them even in really challenging conditions. If you are living under a higher amount of stress because of your social situation, because you are being discriminated against, or because you don’t have access to what you need, it might not be realistic to expect the treatment to work to its full potential. I worry that this could discourage researchers from continuing to study a treatment in a particular population, or discourage a family, or a young person, from thinking that there’s something that could help them. In paediatric pain, we do an amazing job at showing how no child lives with their pain in isolation. We have done a lot of research on how the family system, the ways the parents interact with their child, and the ways the child interacts with their health provider, influence the pain experience. Now, I think we need to continue to extend our understanding of that influence, beyond just the immediate relationships, and look at the broader context that the young person is living in and how that context can impact them in very different ways, depending on their identity.
Throughout this interview, you have emphasised the necessity to change how research is conducted. Thinking also about your own effort to do that, can you tell me how methodologies should be modified to make research more inclusive and ensure that young people of all identities are cared for?
I think one of the most important things that we have been doing in our work is asking young people about what parts of the research experience has worked for them and what hasn’t. That has been helpful to make modifications to the protocol and to offer different options. Much of this comes down to a couple of key principles:
One of these is flexibility. As researchers, we like clean protocols and for things to be controlled, but figuring out where it is possible to be flexible is so important. Another is to actually ask the people with lived experience what would make a difference to them. Some of our qualitative data have shown how patients having a relationship with the research team, and being shown how their ideas are being incorporated, can be really powerful and helps make sure that they are getting something back too.
Indeed, we have been thinking a lot about how to create a reciprocal relationship, for example by designing our platform so that we can feed the data back to the participants. This way, they can see the data in a way that makes sense to them and they can track the things that are meaningful to them, rather than sending us information and never seeing it again.
Finally, I think that a lot of what’s needed really comes down to basic principles of respect. I feel sad that I have to say that, but when we think of some of the experiences that these families have been going through - navigating the healthcare systems, having other experiences of research participation, or just living in a world that is often not designed for them - I think it can go a really long way to think about how to approach someone with respect. There is an assumption in research that we need to have everything figured out and sometimes that prevents us from asking important questions, like how we can approach families in a way that is going to make them feel comfortable and safe, whilst also being meaningful to them.
Part of what I have been thinking about, is that we talk a lot in clinical care about providing trauma-informed clinical care, but I think we need to start talking about how to provide trauma-informed research, and that can be such an important step in undoing what has made research inaccessible for some populations.
Issues with the way research is conducted can trickle down to the clinical experiences. Can you think of any way that the clinical practices can be changed to contribute to addressing the unmet needs of young people with different identities?
I think a lot of clinicians naturally make modifications to the way they provide treatment. The problem is that we don’t always know if what we are doing is working, because of how we are collecting data. I think that, again, it is so important to incorporate the patient’s and family’s perspectives on what a meaningful treatment outcome would be.
In pain trials, we always measure pain intensity, functional disability, anxiety and depression as health outcomes of a given treatment. But those are not always the outcomes that are significant to a family. Instead, it could be more important to be able to sleep better at night, or to be able to do a sport they love. So, I think that part of making a treatment accessible, is also thinking about how we can modify things to make their desired outcome happen.
For example, there are certainly a lot of similarities between the cisgender and gender diverse youth’s experiences of chronic pain, so some treatments can still work. However, there are some parts of the pain experience that are specific to gender diverse young people. A lot of the gender diverse young people we talked to for our research have talked about chest binding and how, even if it is a source of pain, it is also very important in developing their identity. So, if we are focused on the idea that for our treatment to be effective, we need to decrease the pain from a 7/10 to a 4/10, we don’t understand that this pain represents something important to the young person; we end up missing the mark in providing really good care. We need to give the right space for that young person to talk about their experience, and what is critical for them. That’s why I think that having clinician scientists is so important, because there is such a difference between the real clinical world, that can be really messy, and what we ideally like to do in research. Incorporating this information back into research, and understanding what’s working, when and for who, is so important.
Before, you said there is an increasing awareness in research of the influence of some broader contextual factors on pain experiences of pain. Can you talk to me a little bit more about the changes and advancements you see happening in the field of paediatric pain?
I think it’s amazing the amount of interest there is now in trying to understand more about young people that have not been historically included in pain research. There is a really incredible community of folks that have a specific interest in gender diversity and paediatric chronic pain, and are trying to do really meaningful research. Also, I am excited about the fact that I am seeing more and more work with an intersectional perspective - projects, that are not looking at sex or gender differences in isolation, but are instead also taking into consideration race, ethnicity, socioeconomic status and other social positions that might be associated with marginalisation, power or privilege. They are trying to understand how all these factors intersect and, how the health disparities that we observe, fit into this framework.
One of the reasons why this kind of work excites me so much is that it’s hard, it’s challenging. I like the hard things in science, because it means they are important and they open up so many interesting opportunities for amazing collaborations. Intersectionality is not a new concept, per se, but it is now being applied directly in paediatric pain research. This is leading to interesting discussions on how to translate this into practice, using mixed methods, and how to engage differently with people with lived experience (and importantly, it leads to bridging between disciplines).
Pain has always been a very interdisciplinary field anyway, where medicine, psychology, basic and clinical science are integrated. However, I am glad to see that now there is, more often, an effort to link the pain experiences to the broader social context, that goes beyond the parent-child, or provider-patient relationship. There is a shift in thinking about our research more generally, and in an intersectional way, to incorporate multiple different identities, social positions and contexts.
To conclude, what are the future prospects in this field that you are most excited about?
There are a lot of things I am excited about! One of them is the increasing representation. I will be so thrilled the day that I can have a young person walk into my office and I will be able to say, “Look, this is where you are represented in the research and we know how to help people like you. This person’s experience in research might not 100% be your experience, because you are an individual person, but science cares about you too”.
This article was written by Caterina Falvella and edited by Rebecca Pope, with graphics produced by Lilly Green. Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch!
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