Join Mary Wing in discussing One Thing she wants pain researchers or clinicians to know. Mary urges clinicians to validate pain experiences and avoid stigmatizing language. She emphasizes the importance of peer support and offers insights on clinician-patient-researcher collaborations.
About Mary
Mary Wing developed chronic pain after spinal surgery in 2004. You can find out more about the Adelaide Pain Support Network here.
Transcript
Joshua Pate: What is one thing that you want pain researchers or clinicians to know?
Mary Wing: Well, start with clinicians. I think one thing I’d like clinicians to know is to validate the patient. It’s so important for the patient to know that you believe that they’re in pain because so many patients have been through disbelief, stigma, and all sorts of other things which make them sort of very anxious. So letting them know that you’re on their side, and you’re going to do the very best thing together to get the best outcome… It provides a calming atmosphere, and it offers hope.
There will be, with the subjective nature of pain, there will be adjustments to be made. There’ll be setbacks but when people become more confident with your help they can work out a setback plan, and when they have a flare-up, or anything like that, then they can go back to that plan and have the confidence to use it. So, having a good working relationship sets the foundation for the best outcome, and don’t ever forget the value of peer support because peer support also offers that validation. I know that when people come into our groups, there is this overwhelming sense of relief that everyone in the room “gets it”, and I can still remember the first time I walked into a room full of people that I knew understood, and they weren’t sort of stigmatizing me in any way, and it really makes a big difference in your own confidence to manage.
Try to avoid terminology like “slip discs”, “herniated discs”, “bulging discs”, “no knee cartilage”, and worse still, “you’ll end up in a wheelchair”. Yes, that is still being said to people today. There are other ways to present that information. Like “we’re looking at the normal changes we’d expect to see in your age group”, “backs are robust”, “discs can’t slip”. And I love David Butler’s “wrinkles on the inside”. We do change each decade on the outside, so there’s no real reason to think we might look the same on the inside as we did when we’re 25. But there’s no reason to think also, that those changes are causing pain. And the last one is that most episodes of low back pain in particular, will resolve in a few weeks on their own, because that’s most common reason people present with low back pain.
My one thing for research is to always involve patients in your research projects. Working with patients on a research project is a totally different thing, than a clinical encounter where your mind is occupied with diagnosis, treatment plan and everything else that goes on. But when you’re focused on the one thing yourself, it’s a project, you’re working on it together. You’re going to both find it enriching, and the project’s going to benefit so much from that co-design.
Co-design’s awfully powerful, and that collaborative approach, it acknowledges the expertise of both parties. And therefore the whole thing becomes more relevant. You can have an enhanced study design by involving patients at the design stage. Now, from my experience with surveys, there’s always between 2 and 5 questions that I can’t answer unless I can write a sentence underneath. Well, I can’t do that. But from my working with researchers I found that you can sometimes tweak the wording of the question so that it can be answered within the criteria, and it just makes so much difference. And it makes it easier to recruit and to retain participants. For example, if you’re doing a Delphi study or a longitudinal study, you want people to come back, but if they feel uncomfortable with that first round, and don’t feel as though they’ve expressed themselves properly, they just might not come back.
And lastly, patients can play a crucial role in translating complex scientific language into something that’s understandable to the general public, and that also makes it a lot easier to disseminate research findings much more effectively.
Joshua Pate: Amazing. Well, thank you so much, Mary. There is so much gold in what you have just said.
Mary Wing: Thank you Josh.