so you walk into the doctor's office and they say to you well you know you're getting old there's not a lot we can do about it you need to get used to it this is where and tear and what you should do is sit on the couch and wait until you need your joint replaced the unfortunate dialogue that I just extrapolated there is not uncommon in today's busy Medical Professional circumstances and that biomedical dialogue is oftentimes incredibly unhelpful as both the means of communicating about this disease but also being empathic and thoughtful in a person- centered way around listening and forming goal oriented approaches to the management of this disease so today that's what we're really getting into we're getting into how we communicate about this disease and optimal ways of doing so rather than just framing this as you know this is a terrible way to talk about this disease and communicate about the disease let's look at how we can do that better and you might be thinking well what can I do as a person person living with this disease and ultimately isn't that all driven by the healthc care professional that's hopefully helping Foster that shared care that I should be receiving well it's really important for you to understand that that communication can be really helps both by the way you frame your story but also about what you look for in healthcare professionals and the fact that you do typically have a choice about who you see for care which can be driven in large part by the quality of the care that they receive and communication is a really key and essential part of that and we're really privileged today to have back as a returning guest samanta busley to talk about this incredibly important topic about communicating about ostearthritis hello Sam welcome back to the podcast thanks for having me back David that's uh my pleasure as always it's good to see you now we've had the privilege of doing this once before I think hopefully as many of the listeners will know when you spoke about sticks and stones and how terminology can be harmful and we'll probably get back into a little bit of that today and so for at least some of the introductory questions I'll encourage people to go back and listen to Sam's contribution back then and so I'm literally just going to ask you the first of our typical introductory questions which is can you just share with the listeners a little bit more about your background and what a typical day looks like particularly in the context of your new role thank you David yes so I I am originally a physiotherapist I currently a senior research fellow in physiotherapy I have a conjurant role at GFI University in worlders and Women's Hospital at the hospital there I'm in the physio Department um which is Australia's I think largest physio Department there's 166 phys there um and the lovely part about my role that I really enjoy is that I get to hear about patient experiences clinici experiences the successes the challenges the frustrations on a daily basis which really helps me to keep keep grounded and my research really grounded I and it also means that I have access to study participants and things so I can you know a means of conducting my research and also having that direct Pathway to translate my research too so that's a typical day for me I'm anywhere between the uni or at the hospital there yeah well it must be a great opportunity to translate that wonderful work that you're doing 166 physios that sounds like a lot of physiotherapist what's a what's a collection of physiotherapists called yeah good question Gaggle or FL I don't know maybe we need a collective pronoun there well we'll have to think about that one I clicked it now another time another time now obviously the main focus of today is really building upon the work that you did for the health professional training modules but obviously we're taking a lens here today where We're translating that in a way that will be useful for consumers so the people out there who are living with the experience of osteoarthritis but in the first instance mon if you could just tell us a little bit about when you know health professionals are interacting with people with osteoarthritis what are the important considerations they should Undertake and that's obviously both from the perspective and lens of the health professional but probably more importantly from I guess due consideration that people living with Osteo should expect ideally from people looking after them well I'd sort of start by saying that you know we know osteoarthritis had an enormous impact on people's lives it's not just the physical experience of osteoarthritis but it's also there you know the impact that it can have on people's emotional social and their spiritual well-being too and that people seeking care are really looking for support to get control over their symptoms because they want to be able to do the things that that they love and value and they're looking for for support to be able to do those things and obviously the the impact of osto arthritis is going to differ from from person to person the support that they're going to need is going to be different for each person and the things that they love and D you doing is going to be different so the starting point I would say of interacting with people with osteoarthritis needs to be finding out about the person who is sitting in front of you everybody has a story to tell and it's just you know people need encouragement to share that story to tell that story and I think often times um busy clinicians our observations would suggest uh can really fall into that trap of checklist or pickbox communication so things like you know what's your pain on a scale of of 1 to 10 or how far can you walk before the pain stops you you know do you have a a history of depression of cancer of heart disease these checklists but this style of communication really provides limited insights I guess to the person that's in front of us um so a simple you know tell me your story can reveal a lot and sometimes those open-ended questions can be really powerful like how did that make you feel or what did that mean to you why do you think that in case of you know the tick boox of General Health you know tell me more about your General Health and these sorts of open-ended questions can really reveal a lot more about that individual's context their knowledge and their beliefs um as well as their values their goals their needs their preferences and these are the sorts of things that we need to understand to really Le support people to to live well with osteoarthritis the evidence tells us that people can get control over their symptoms and live well and our role as clinicians is to really make sure people have that the knowledge skills the resources they need to be able to do this David I know one thing that we've spoken about before is is health literacy and considering that in the interaction with people um seeking care and I think this is an interesting thing to maybe mention here and we're kicking off a study at the moment to look at how clinicians understand health literacy it's something that we hear a lot about being important but it's really clear what clinicians know about health literacy and how they incorporate this understanding into the care that they provide that we have a sense perhaps that there's this default understanding of health literacy being synonymous I guess with the level of education but there's a large body of of research out there led by people like um Professor Richard Osborne and others and that tells us it's much more complex than that and and health literacy involves aspects like having social support for health being able to navigate the health system having sufficient information to manage Health knowing where to get information and when we take that sort of perspective that broader perspective of of health literacy it shifts from being a really stigmatized or almost sort of fixed trait that clinicians maybe can do little about but to something more modifiable that clinicians are really responsible for and something I'm really interested in my research is how we can make sure that people with ostero arthritis have access to that information and support that they need I just going to expand a little bit on that in Australia here with' identified priority populations so there people that are living outside metropolitan areas people from culturally linguistic diverse backgrounds um Arin to Islander peoples these populations that typically do experience lower access to care and I'm part of a team of abigal and non-indigenous clinici researchers that are leading a research programs towards Equitable osteoarthritis care for abigal toate Islander peoples and for a bit of context in Australia abinal State Islander people are 1. 5 times more likely than their non-indigenous counters to experience osteoarthritis but they seek Care at half the rate and our research is really found that the poor communication with care providers and a lack of culturally Safe Care is a key reason why a forra Down Under people disengage from mainstream health services so my colleagues and I are really working in partnership with community members and also aigal Community controlled health organizations to look at alternative models of providing osto Arthritis Care really looking at care that really takes into account people's cultural needs and preferences it's culturally safe and that includes things um like we're looking at upskilling health workers in original controlled Community Health Organization settings the community based care and and upskilling them in in evidence-based osto Arthritis Care as well as upskilling clinicians and mainstream health services around providing culturally Safe Care and I thought if anyone was interested in knowing more about that work that that I can provide you m David with some links to the resources that we've co-designed with and for original Inland to people with osteoarthritis that was led by our wonderful PhD student and now post. Brook Conley and I'd also direct your listeners to a really great website developed by associate Professor Ivan Lynn and colleagues which is www.
clinical yanning dog for anyone interested in learning more about culturally appropriate communication superb we'll get those links from you and include them in the show notes for this episode so that people can dig into those further but really just to reinforce I guess there are a lot of great points there but just the importance of that open style of communication and ideally providing information at a person's level of health literacy so they can learn appropriately now alongside providing that appropriate information I think it's important that that information be accurate and evidence-based now you're a wonderful proponent of a lot of the mythbusting that we can do in the context of Osteo Rus and some of the misconceptions that are widely spread in this space can you provide I guess at least a brief Overture to at least some of those what the accurate truth might be rather than the misconception if possible yeah from focus groups and observations we done with I guess many hundreds of people with osteoarthritis um we have as you mentioned identified these common misconceptions that are occurring in our research I mean we've seen these in people in different stages of their osteoarthritis Journey people from different cultural backgrounds as well as clinicians and we do call these misconceptions because they don't align with what we know from the evidence base but another way to describe them could be unhelpful beliefs because they're really beliefs that act as a barrier to engaging in in healthy behaviors and living well with osteoarthritis the first misconception that we're identified which is a big one that is around that pain is always a sign of damage occurring in a joint when there's strong scientific evidence now that the pain people experience with osteoarthritis isn't the same pain as what one might feel if they put their hand on a hot plate for example or when we roll our ankle pain can occur without tissue damage and this is the case for chronic or persistent pain like osteoarthritis and in the case of osteoarthritis there are lots of different factors that can play a role in that pain experience these include things like the way we move and how much we move our sleep our diet our stress levels and these are modifiable and and that's the good news the second unhelpful belief that we have observed is that a scan or Imaging is needed to diagnose joint pain the evidence will tell us that Imaging for osteoarthritis is only indicated in a limited number of circumstances but we have evidence that referral to unnecessary Imaging such as when I'm saying Imaging I'm meaning x-rays or CTS or MRIs that this is really common so so the referral is common and the reasons for this that there is some work that's been done with clinicians suggests that it could be around fear of missing an underlying pathology um the clinicians wanting to reassure the patient or to meet their expectations that a scan is needed but I think what's really important for everyone to know is that scans don't explain what's the driver of osteoarthritis symptoms that they aren't helpful in directing the management approach and they don't predict osteoarthritis outcomes on the other hand the flip side of that there is evidence that OS scans can reinforce misconceptions about joint damage that there's something wrong with the joint and they can really heighten people's anxiety or fear if we're finding sort of incidental findings on scans that aren't related to an individual symptoms and in the case of other conditions like back pain there's some evidence that scans can also increase the risk of that person going on to have further invasive investigations or procedures as well there's some emerging argument around well certainly there is an argument around iming exposing people to unnecessary radiation as well and some emerging evidence around the carbon footprint that Imaging also incurs too so these are all interesting things for us to consider in the space of Imaging um as far as communication skills or strategies I guess to address some of these unhelpful beliefs we we advocate for clinicians really starting by validating an individual's concerns about Imaging and listening to their concerns around Imaging or the need for a scan to be really then explaining clearly what I just explained there that you know what scans can do and what they can't do it might be really helpful to explain that two people can have the same signs on Imaging but experience really different symptoms so that tells us that there are other factors in play that are playing a role in that pain experience the third sort of recurring unhelpful belief misconception that we observe is that osteoarthritis will only get worse over time when there is evidence that osteoarthritis symptoms can also stabilize or they can also improve over time and this really ties in with the fourth and fifth common misconceptions that we see which is that there's nothing that can be done to improve symptoms of osteoarthritis except a joint replacement and this misconception that weight bearing and exercise interventions will only damage a joint that it doesn't have that cillage anymore for cushioning and there's good scientific evidence that graduated loading exercises is safe for joints and that it's important for joint health and there's also evidence of sustained improvements in pain in function following exercise interventions when we're managing factors that contribute to an indiv ual's unique pain experience so the things that I mentioned before the way we move how much people move sleep hygiene diet stress by focusing on these things you know people can be supported to manage their symptoms without going on to have surgery so these are the common misconceptions or beliefs that we've identified David and now reset that was amazing for you to package all of that into a small condensed portion of time and I guess just to give people a sense Sam and others have written extensively about this and what we might do is also provide a couple of links to particularly the work you did in jospt and some other spaces so that if people do want to dig a little bit further into some of those unhelpful beliefs they can and I guess just to emphasize the fact that Sam and I have the privilege of working with a PhD student who's being incredibly industrious in this space so more to come more to come so watch keep watching now in addition to those misconceptions and unhelpful beliefs a lot of the biomedical approach has taken to labeling this disease with terms that are often times not AP can you just tell us a little bit about some of those terms and why they might not be helpful yeah yeah so we've conducted a study really trying to understand these terms that people use to describe osteoathritis in more detail a couple of years ago now so we gathered together all of the studies that had used interview methods to talk to people or understand the lived experiences of people with osteoarthritis and their cares and clinicians and so when we pulled together all that re Arch and we had a look at that the quotes So the way people spoke about ostearthritis in there we found that across all the different studies and there were 62 of them and I think they were conducted in 16 different sites around the world we could really see this very strong dominant way of talking which was really what we termed impairment based language so this involved words and terms that focused on what was wrong with the joint words like bone on bone um wear and tear often people used analogies to machines or cars when they're describing their joints so it's like the brake pads on a car that have worn out or you know it's not safe to use my joints anymore or I believe in nuts and bolts you pull out that worn out part and you replace it with a new one I mention here an interesting study that we have underway being led by great post Nadia B at MES at the moment well we've asked young healthy Australian adults who are under 40 and they physically active and we're asking them about what they think about their joints and their joint health and osteoarthritis um and it's really interesting to see this real impairment based language and these terms coming through strongly here as well and I pulled a quote here to show you uh what captures this really sentiment of these healthy subjects so one them describes here over time as you use your joints or as you get older the amount of cartilage reduces in the joint and so it can lead to Bones rubbing together and that can lead to arthritis so what's really coming across strongly in this data is is really I guess that people have an understanding of joint disease or osteoarthritis but people really don't know anything about their joint health and I think this is really interesting I think there's a real opportunity in the field of osteoarthritis for more of a health promotion approach too what can people do to keep their joints healthy and I think that's a really interesting Avenue for us to to consider in the future David so obviously there's that impairment approach that is presumably predominant with the way you know people in the biomedical space describe ostearthritis to people living with ostearthritis how better to explain the concept of ostearthritis to people living with this disease rather than the impairment based approach is there a better way yeah it's a really great question and definitely you know a work in progress and of course there's no oneid fits all explanation for osteoarthritis tailoring explanations to an individual's unique context is always going to be important through my research what I've been finding is that many clinicians can find it helpful to use a framework I guess to sort of scaffold their explanations and one that I I've applied quite widely and and it's actually quite widely used in the broader Health literature is the common sense model and that model tells us that when somebody experiences a symptom of of Health they try to make sense of that symptom by drawing on a set of beliefs about what the symptom is um what caused it what the consequences are how controllable it is and how long it will last and then based on those five belief Dimensions they make decisions about what they're going to do about the symptom so in the research that I do I've been suggesting condition conditions can offer information about ostearthritis that aligns with those key belief Dimensions so what it is the causes the consequences controllability and timeline and I can share an example of an explanation that we've been working up alongside people with us du arthritis and this might just be helpful for people to consider when you know and how they might tailor that to their own context and I can talk you through that here so starting with what osteoarthritis is and we planed along these lines so osteoarthritis is a condition of the joint and the muscles around it that can make your joints feel stiff and sore it's often described as joint wear and tear but using your joints won't wear them away joints are nourished by movement and they need to move to be healthy and then if we move into that cause Dimension so you're more likely to get osteoarthritis if it runs in the family you're overweight or you've had a big injury in the past but lots of things can influence the pain you Ste the weak muscles um for example not getting enough sleep or exercise or diet or stress that many of these things can be within your control then moving on to consequences joint aches and pains can interfere with the activities you enjoy this can affect you emotionally too but it's important to know that pain isn't aign the joint is being damaged and with the right management you will control the pain and do the activities that are important to you and to improve your joint health it's safe to be active even if it's a bit sore at the start and then timeline within a few months should find that you're able to do more most people can look after osteoarthritis without surgery for a small number of people surgery can help and if you do end up having surgery then being strong before the surgery will help you recover afterwards and again that that is not a oniz fits all but that's something that we've been developing up alongside people that seems to be acceptable to to the people at least that we've been speaking to so that as a framework might be helpful for people to consider when they're explaining osteoarthritis to others I would sort of just say there so in that explanation there David I guess the other thing I'd point out is that the real focus on the modifiable aspects of the experience and really trying to communicate that message that there are things people can do that can be supported to do to gain control of their symptoms and when I'm often asked to present on this topic I often like to do it alongside my colleague JP Cano who's an expert clinician researcher and a great communicator and he often draws analogies to other chronic diseases when he's explaining osteoarthritis so he'll talk about in conditions like diabetes or heart disease or mental health conditions there's a focus not so much on curing these conditions but on empowering people to control their symptoms in the long term by using strategies like exercise diet sleep Stress Management and it could be helpful to be thinking about osteoarthritis in the same way that's absolutely superb and hopefully we start seeing that on more Billboards and posters through uh clinicians rooms so that people can actually get the information that's ideally required for them now Sam as you started alluding to the framing of this communication ideally is done in a way that people feel more empowered I'm wondering you know whether that be along the lines you're just talking to about JP but can you just tell us a little bit more about ways that we can make people feel more empowered y so you know again so you know I keep on coming back to talking about these aspects of the osteoarthritis experience that that have the potential to be under control but I think people really do need to be able to control the controllables and our role as clinicians is to make sure that they do have the ability to control the controllables the knowledge the skills the resources that they need to do that you mentioned before um David that we've got the pleasure of co-supervising a PhD student for Nomi um beara and her PhD researchers really looking to develop a a communication framework towards empowerment for osteoarthritis it'd be really great to hear Naomi on this podcast in the future sharing her wisdom with us but I I thought I'd mentioned just her excellent um soon to be published systematic review that's really highlighted I guess when we're thinking about empowering people with osteoarthritis the importance of making sure that people have access to high quality information in a range of formats to suit their needs and preferences but also the importance of making sure that they had those skills to be able to to apply that knowledge and it's really one thing for people to know for example that they need to exercise um but they need to have strategies to be able to control their pain while exercising and they need support to be able to practice those strategies and and build confidence in applying them over time um we also need to think about I think this is a big one that the resources people need to be able to exercise or to eat well or to sleep well so things like um you know access to good food safe places to exercise stable housing and and these are things that I think clinicians or from our observations often don't consider or if they do consider them then they don't really know what to do about them so I think there's a real opportunity to hear to upskill clinicians as real Advocate who can I guess facilitate access to the resources an individual might have at their own personal level interpersonal level and also the community level to support them to be able to live well superb now Sam you've packaged a whole lot of information into the last what is it 15 20 minutes is there any other pieces of information that you think are critical in closing off about this topic before I give you a closing question David I know that sometimes you close on you know what would be a piece of advice or knowledge or wisdom yeah that we could give people and I did have a little think about that coming on and I think um what I would say to people is that when we're thinking about shifting away to thinking I guess from being a very impairment based understanding of osteoarthritis um you know I'd love people to think more about that when our joints are healthy you know you can do the things that are important to you and this keeps your mind and body healthy too but vice versa as well that when we're looking after our bodies and our minds through things like being Physically Active eating well sleeping well we're keeping our joints healthy too so um you know encouraging people to find a clinician who can support people to look after their overall health and support them to live well with osteoarthritis is what you know I would be really advocating for and that's a great way to close and Sam thank you again so much for the privilege of me having an opportunity to spend a little bit of time with you imparting wonder knowledge for listener base um and again thank you for the amazing contributions you're making to this space and I hope you continue to do so I it's such a pleasure talking to you as always thanks very much again for the opportunity it's my pleasure Sam packed an enormous amount of information into a relatively short period of time about that incredibly important topic it's incredibly important that you as a person living with ostearthritis be approached with a very open style of communication and that you're given an opportunity to tell your story about living with this disease as you will probably know there's an incredible number of unhelpful beliefs and misconceptions about this disease but hopefully some of those were distilled for you today and you walk away with information that's more accurate and evidence-based about ostearthritis we know that many times this disease is framed from an impairment based disc sced perspective whether that be you know the fact that your brake pads are worn out this is bone and Bone wear and tear whatever it might be but ideally we should be shifting towards descriptors that use the common sense approach that Sam framed today we'll include hopefully the text of that in the show note so if you really want to go and have a closer look at what Sam explained there please go along to the show notes and we'll include that there for you and ideally as we shift towards that more empowering approach that Sam outlined today will move more towards a communication style that is really enriching and empowering and ensuring that your journey is done from one of a position of strength and power so again thank you so much for the opportunity to spend a little bit of time with you today I'm hoping that you found the content enriching empowering informative and between now and when we next have an opportunity to interact please do take care of yourself thanks for listening to Joint action with David Hunter if you like our show and want to know more visit www. join action. in if you have any questions you can email us at hello joint action.
