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By Sam Pywell @smileyfacehalo COT conference 2017 Anxiety and stress: exploration of common discourses influencing community Occupational Therapy practices.

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Presentation on theme: "By Sam Pywell @smileyfacehalo COT conference 2017 Anxiety and stress: exploration of common discourses influencing community Occupational Therapy practices."— Presentation transcript:

1 By Sam Pywell @smileyfacehalo COT conference 2017
Anxiety and stress: exploration of common discourses influencing community Occupational Therapy practices in palliative (and end of life) care Hi my name is SAM PYWELL and I’m here to talk with you about ANXIETY AND STRESS, and the COMMON DISCOURSES influencing COMMUNITY OT practices in palliative and end of life care. Thanks for coming to this PRESENTATION.  I hope you all take something from this and it SPARKS some critical debate over coffee.  

2 This presentation: PhD research Pilot study
Anxiety and stress: OT perspectives  Instigate critical debate Recommendations for best practice Give your opinion at the end: Meetoo (instructions at end) So…. This presentation is about my PhD research, a PILOT STUDY on YOUR opinions as to HOW we talk about anxiety and stress in this remit, and WHY we talk about it differently. Discourse therefore is about AMBIGUITY in communication.   This is to INCREASE your DEPTH of CLINICAL REASONING around advanced communication in palliative care….. I'm here to instigate Critical debate, not about the research method or methodology, but about this ambiguity.   I'm expecting the Q and A session at the end to be a constructive debate and I challenge you to reach out of your comfort zones of perhaps the critique of method/methodology and to engage in this topic area.....).   We are going to FINISH with looking at PROVISIONAL recommendations for best practice, given ambiguity exists around anxiety and stress. I stand here with the greatest of respect – please be clear  why I am here – its to argue the complexity of clinical reasoning behind our excellent work in anxiety and stress AND to argue ALTERNATIVE PERSPECTIVES which add WEIGHT, VALUE and DEPTH to our CLINICAL REASONING.  At the end we will use POLL EVERYWHERE – I will give you instructions at the end how to use it.  I’d like your OPINION for the purpose of DISCUSSION, not to be used in my research, but for an article in OTN……..  Answers will be anonomoyous We each SHARE something in common today – we ALREADY have a concept of our own anxiety/stress, and a concept of what it is in palliative care (whether that is through what you were taught at uni, what you have learned since in LIFE or what you have experienced in clinical practice.  I want you to DRAW on your experience and bring YOUR opinion to the table.... 

3 Thank you....... Participants Colleagues who have supported me
Institute of Social Psychiatry award (2013 & 2016) Specialist section COT (HOPC) Elizabeth Casson award Constance Owens Trust UCLAN supervisory team and staff First: Thank you to everyone who has participated, supported me, engaged in this debate, funded me and listened to me in supervision (!) - I am endetted to you all, and couldn't have continued without your support.  Theres a lot of people involved in helping research move forward – so thank you!! One reality of research is its expensive.  Without funding support, this would not have been possible, and its required many applications over several years now but each one has been worth it.  I’ve sat in conferences and wondered how people do it: its simple.  Apply, and keep applying Its about persistence.  Another reality is without participants, there is no data. No research, nothing.  Without you, I couldn’t have done this.  Thank you doesn’t seem enough…..

4 Supervisory team Dr. Hazel Roddam (UCLan) - SLT, clinician and manager by background, Reader in Allied Health Practice, Chair of council for RCSLT , CAHPR regional hub founder member & national strategy board vice-chair. Dr. Anne Milston (UCLan) - OT, principal lecturer, Research  and innovation Professor Dawn Archer (Manchester Metropolitan University) - Linguistics, Research and Knowledge exchange, coordinator for Languages, Communications and Information. QUICK** Along with my UCLAN supervisory team, we are working with a Professor in Linguistics we’ve looked at anxiety and stress through PRAGMATICS (which resonates really well with us being a pragmatic profession) – as it’s the real world I was trying to capture and reflect.  CUT***** We looked at what is IMPLIED, ASSUMED and FRAMED when we talk about anxiety and stress, as pragmatics is the study of MEANING IN CONTEXT.  So what does anxiety and stress mean in this context, in palliative care.

5 Background Community OT background
University of Central Lancashire Postgrad student since 2008 (whilst working in NHS) This PhD – commenced early 2012, transferred end 2016 Ongoing research – due 2019 My background (to help give you a bit of context) I'm an OT with over 10 years experience in the NHS – I've worked with individuals IN THE COMMUNITY with palliative and end of life prognosis, and delivered anxiety management, relaxation as a part of a very large, generic community role.   I currently work at UCLAN. I found in the real world conversations around anxiety and stress FACINATING as we have so many different ways of talking about it (across patients, different professions, different activities – many variables). I chose to look at what influences COMMUNITY practice – because you can be involved with SO MANY people in patients care in the community.  This is how my PhD started in 2013. As you will know if you've done a bit of research, I basically got obsessed with when someone used the word anxiety or stress what context was it in and why.  This ambiguity is much wider than just OT, but I wanted to see why it was occuring in our profession, in the clinical area I worked in at the time, and what we thought about it. THIS RESEARCH IS ONGOING – and end of 2019. 

6 Importance of OT addressing anxiety and stress in palliative (and end of life) care
Mental health: current HOT TOPIC in media Palliative patients mental perspective can significantly affect outcomes (Lichwala, 2014) “I’m fine” campaign (Mental Health Foundation, 2016) There is NO DOUBT about the IMPORTANCE of the OT role in addressing anxiety and stress – this is not new information, the value we have as a profession and the contribution we make. NO DOUBT.  Our profession is WELL published in this arena.... (Cooper, Creek, etc…) Mental health: current HOT TOPIC in the media – Also the young ROYALS are strong advocates for open conversations about mental wellbeing. We already know that, as Lichwala in 2014 said, “Palliative patients mental perspective can significantly affect outcomes” Recent campaigns such as “I’m fine” by THE MENTAL HEALTH FOUNDATION have highlighted the hidden meaning behind what people say, but no studies have focused on anxiety and stress in OT and hidden meanings. I did an extensive literature review and evidenced where there were differences in order to capture ambiguity, but here I want us to focus more on understanding reasons WHY it may occur first as it is NOT as simple as saying one perspective is right, and one is wrong.

7 Ambiguity perceived as ‘cracks’ in clinical reasoning
Reality check: we don’t all define, understand and use anxiety and stress the same (for functional activities) The trap: It is easy to imply, assume or frame within conversation The solution: we need to unpick conversations, looks for patterns and meaning check to justify clinical reasoning There is a real risk ambiguity (OR WHEN WE TALK ABOUT anxiety and stress DIFFERENTLY) could be perceived as CRACKS in clinical reasoning. Therefore, we need to go deeper and look at why this ambiguity exists. An example is where you might talk about anxiety management, but  a colleague might think you mean stress management, or where a patient is refered to a service where its IMPLIED anxiety or stress is the language the patient uses. The CORE ASSUMPTION (or fallacy) that we all define, understand and use anxiety and stress in the same way is a CRACK in clinical reasoning.  BECAUSE IN REALITY WE DON’T….. And this influences clinical reasoning and practice.  (reality check) THE TRAP – ITS EASY TO IMPLY, ASSUME or FRAME WITHIN A CONVERSATION – we need a lot more contextual information in clinical reasoning. A referral for anxiety management can imply the patient has been diagnosed with anxiety, and conversations around service criteria can be challenging if understandings of anxiety and stress differ. We have a professional obligation to be ACCURATE in documentation and communication, according to our code of conduct and professional standards ( RCOT ref)…. So the SOLUTION is around unpicking conversations and meaning checking to justify clinical reasoning. This is the main thread I’m trying to weave throughout: its about the use of ADVANCED COMMUNICATION SKILLS…… *****CUT******* These examples, I still believe now, are not wrong. I’m not highlighting these to be so simplistic to say they are wrong. I’m highlighting discourse and I’m going to go into the reasons why multiple realities/understandings exist. MEESON (1998) – why?..... Why was it changed? Does that still happen? Need to be mindful of this in future research R and D – why? Why stress and not anxiety Meeson (1998) changed diary definitions of community OTs from stress management to anxiety management. Acknowledged by author. Cooper 1997 – current version of book – word change in title….. R and D guidelines (ref) SM not AM or A and SM

8 Research overview Pilot study: ethically approved @ UCLAN
Qualitative: Interpretivist approach Mixed methods Phase one – E-questionnaires Phase two – Telephone interviews Results – phase one (this presentation) Ongoing – currently coding interviews in MaxQDA (thematic analysis) I'm hoping some of the participants are in the audience then you get to see whats happened – the participants for both phase one and two were you guys – qualified OTs across clinical practice, research and academia with experience in palliative care.  This PhD is a pilot study, qualitative (inter-preti-visit approach) Ethical approval was obtained through UCLAN for each phase – phase one being EQUESTIONNAIRES, phase 2 being TELEPHONE INTERVIEWS This study used sequential Mixed methods – that means the results from phase one informed the questions for phase two. Participants for both phases were RECRUITED through social media thanks to support from the ROYAL college of OT and specialist section in palliative care (and its members). DATA was anomonysed And RESULTS were analysed using WMatrix3  – a linguistics software analysis package from Dr. Paul Rayson, at Lancaster Uni.  Its been used (and published) across many studies now including work on the Metaphor at end of life MELC project (ref).  The software was used to input all responses from BOTH phases and analysed for statistical significance, word (semantic) family groups, and something called word frequency – the number of times a word appears.   Used PRAGMATICS frame of what was assumed, implied and framed within what was said by participants. Phased one used manual thematic analysis, whereas phase two used MaxQDA – (HANDS UP - I'd be interested to know if anyones used this) software to manage the large quanity of data obtained from telephone interviews. ONGOING – currently finishing coding interviews in MaxQDA – once this is done, themes will be going back out to

9 Pragmatics Study of meaning in context
What is implied, assumed, framed within conversation? What changes the meaning of anxiety and stress? (Archer et al. 2012) So…. Why use pragmatics in this PhD? Well…. Pragmatics is THE STUDY OF MEANING in CONTEXT it helps us understand WHAT IS UNDER THE SURFACE in a conversation in real life… Its about….. What is IMPLIED, ASSUMED and FRAMED within conversation It helps us also look at what CHANGES THE MEANING of anxiety and stress

10 Phase one questions How do you define stress?
How do you define anxiety? What interventions would you use to address a patient in the community reporting symptoms of anxiety, stress and breathlessness around the functional activity of mobilising up the stairs? What do you think is the difference between Anxiety Management, Stress Management and the management of anxiety in this remit? What outcome measures would you use for a. Anxiety b. Stress? For palliative patients in the community referred with anxiety, which functional problems are most commonly reported? For palliative patients in the community referred with stress, which functional problems are most commonly reported? What percentage of community palliative patients referred to OT have either anxiety or stress? In your experience, would you say that Occupational Therapists use inconsistent terminology to define anxiety and stress? What about the terminology used to define interventions to treat this? Do you think there is any difference between the language an Occupational Therapist uses and other relevant parties, and if so, why? Do you have any other comments? The questions were as follows – the intention was to try to find examples of what is going on under the surface of this conversation of anxiety and stress DATA QUALITY was the goal, not quantity (Steinhause and Barroso, 2009) - 15 participants responded - we were asking for specialist knowledge (qualified only due to wanting to go into the clinical decision making), specialist experience within palliative, but expanded to include all academic and research to not focus on one particular employer.  

11 WMatrix3 results This is an example of the results within wmatrix3 – this WORDLE illustrates where the larger the word, the higher the statistical significance within the software (Log likelihood)

12 Phase one: Key themes Key Themes Worry Communication conflict
Individuality and personal expression of language Functional framing Metaphor These key themes were generated from manual thematic analysis and the WMatrix3 results.  We will go into each in more depth in a second. 1. Worry : 2. Communication conflict 3. Individuality and personal expression of language – comes back to the argument for person centered language – we all use and define it so differently 4. Framing (already exists in linguisitcs) but interesting how participants framed cog activities with stress, and phys with anxiety... and that took a little bit to digest.  The possibility that some people may use similar groupings of meaningful activity and occupational words with certain emotion words.  Wider examples can be see with FEAR of falling and work related STRESS 5. Metaphor – one participant used “clouded” – so I included it in the telephone interviews to see if other OTs had experience of using specific metaphors.  Metaphor in End of Life Care has been a massive project at Lancaster uni MELC and already extensively researched.  These themes used to inform phase TWO interview QUESTIONS……  So lets look at each of these in a bit more detail….

13 Worry "Although OTs and other professionals speak about stress and anxiety, often these terms are not felt relevant by the individual, more often identifiable as worry, fear etc..." There’s a lot of layers to this when you start digging, it is such as good reflection point for your students, your colleagues….. What is the language you use in your community of practice (workplace) around anxiety and stress, and what are your patients/colleagues using….. This participant said....."often these terms are not felt relevant by the individual" ASK: why …. Why are they not felt relevant?.....(We should be asking more questions!) Worry was the most statistically significant result in WMatrix3 across all answers, and most participants used worry to define anxiety, but what that meant was it was key within the relationship of the CONVERSATION of anxiety and stress. Participants strongly indicated CHOICE OF WORDS was a therapeutic tool. The reality will exist where an individual does not use/get on with/like/have “worry” as part of their vocab and will have an affinity for other words. Its upto us as Ots to FIND those words, that expression of emotion words alongside the functional words to start to dig into meaning. EMOTION words around meaningful activity MATTER because they can indicate severity of the issue. SO WHAT? Could it be worry is so obvious we have an inattention to its VALUE and SIGNIFICANCE within a therapeutic conversation?...... What if this is happening in conversation.  What if the really obvious stuff, the WORDS people use are starting to be lost with the pressures we face as clinicians…… What if these EMOTION words have significant VALUE and USE within a therapeutic conversation………………………..and HOW are we using these words, and WHY?...

14 Communication conflict
Paradox: similar techniques can be used, yet AM and SM can be considered the same and different interventions Framed two examples: illustrate impact Assuming a "shared understanding" of definition So… Participants illuminated a PARADOX: conflict in communication where similar techniques can be used in AM and SM The next two slides are examples from participants where their understanding of AM, SM is different.  Put simply, we understand interventions like these differently, but we need to be mindful of the potential consequences of these understandings When we ASSUME we all share the same understanding…… this is where there can be negative consequences, and CRACKS can form in our clinical reasoning.  This is relevant as we RELY on shared communication within all sectors. – within health and social care we rely on this shared understanding of definitions for things to work e.g. for referals to be accepted, for patients and families to understand what we do – this is quite important.

15 Frame 1 All interventions mean the same
Risk: Assume everyone's understanding of these are the same What are the implications in practice, research and academia?..... SOME participants described ALL these interventions as being the same So what, what is the impact in practice – if we ASSUME everyones understanding of this is the same it doesn’t matter whether you get refered for anxiety or stress you are likely to receive one of these three interventions. If everyone's understand we all did interventions that were called these three things, they were all interlinked and we all did the same or nearly the same intervention, what happens?  Is this where different services can advertise these three interventions and we all understand as a profession they mean the same thing? If you had a referral for a palliative patient with anxiety, would they received stress management under this model… HOWEVER….The next Frame is different.

16 Frame 2 Distinctly different interventions
Referred for one but not the other Risk: services may take referrals for anxiety but not stress Risk: Do we all have the same understanding of these interventions? The majority of participants understood these interventions to be distinctly different interventions. It’s the realworld practicalities that you have to consider, especially with things like service criteria and remits. If these are different interventions and you have someone with anxiety (or stress, or both), what service would you refer to? What patients do not meet the service criteria because the term anxiety or stress is used (regardless of whether it is diagnosed or not). This for me, really stood out..... this sample, although not large and not generalisable, the participants were from different working areas across the uk, not just one employer or geographic area.  The results said WE DO talk about AM and SM differently. This needs reflection by us as a profession. Its also not as simple as saying you're definition is right and mine is wrong. In reality, multiple understandings of anxiety and stress coexist based on the core relationship of anxiety and stress and what meaningful activity we are talking about. There is potential, if we don’t have a shared understanding (this goes wider – with people referring into a service) a BARRIER can be created – someone referred for anxiety management with stress – is that referral rejected just based on language.  Heres a good point to think about self referrals– what language do patients use. *****finish and link to language as a barrier…. BEST PRACTICE – investigate further, explore language, explore understandings surely it’s the impact on function and wellbeing and LEVEL or SEVERITY of anxiety/stress/worry that might mean referal to another speicalist service e.g. mental health. A lot can be ASSUMED in communication, MEANING CHECKING is VITAL for BEST PRACTICE in clinical reasoning. REFLECT on your own experiences, where have you worked, what are you aware of, what language is used within work, what do you teach, what do you write about?

17 Language as a barrier “I don’t received referrals for stress, they all state anxiety on the referral. Although, sometimes it is more stress than anxiety.” What happens if you are in a clinical reality when you receive a referral for someone who has stress or worries to a service that addresses anxiety management?...... There is a risk that language itself can become a barrier to care. By simply, the service criteria. I would argue, because anxiety, stress and worry are so closely related in semantic families (and fear to some extent) that actually, because someone is refered with a RELATED term that isnt in the service criteria (anxiety, stress, worry or fear) it is not a good enough reason to turn them away. This is a risk , and this is how language and interpretation, assumptions can be the barrier itself. Another issue is whether the anxiety, stress and worry is DIAGNOSED. The mental helalth continuum illustrates individuals who we work with who may have declined mental health services and continue to be under community OT (generic physical). Where we find, through assessment, patients with functional issues who have not been diagnosed with formal mental health issues. I hope this resonates a little – but the language on a referral is not set in stone – it is not always true to the patients terminology and way they would describe functional difficulties and the relation with anxiety and stress.. To be fair, Its complicated isn’t it.

18 Individual and personal expressions of language
“I received plenty of referrals for AM where the patient does not use these words” Individual language – this is quite self explanatory – we are all individuals who can communicate differently depending on the roles we are in(the mood we are in,the pressures we are under, and generally the way we view reality at that point in time) So - participants reported ALTERING language to be NEEDS LED. How many times to you PAUSE before you speak, alter the word you were going to use to be sensitive to the individual you are talking to? Participants implied there might be a Priority weighting of words – is anxiety/stress/worry on a scale of severity? Again this can be quite PERSONAL…. You can really UNPICK the Avoidance of jargon – and difficulties of professional communities of practice..(Lave and wenger ref)v. personal communication

19 Functional framing (emotion word + occupation word)
Frame = put words in a certain context Anxiety + physical activities Stress + cognitive activities Highlight individual definitions + person centred..... So…. I’d like to introduce FUNCTIONAL FRAMING……….. Framing is used in linguistics to describe how words or phrases are put in a certain context - this can affect understanding and meaning. For OT, FUNCTIONAL FRAMING could be described as the use of an emotion word and an occupation word (which affects understanding and meaning). Participants used functional framing by using anxiety with physical activities (such as walking/ going out) and stress with cognitive activities (such as relationships or future planning) So what does this tell us? It bring us to a question Q – what if we (as individuals) use certain emotion words with certain function words? We can see this in the wider literature – stress is often linked to work. For me, this part of the research was where I’d started to look at what PATTERNS did we use in speech, and why.

20 Metaphor Anxiety and stress is “clouded” “Sandstorm”
MELC, Lancaster Uni Phase two: idioms v. metaphors……. One participant used the metaphor “clouded” for anxiety and stress terminology, and after a literature search I’d discovered SANDSTORM was used (as well as Lancaster Uni had completed an extensive project on Metaphor at End of Life Care.) I used the question of what metaphor do you use (as an OT) in phase two – but its really important to mention here that in the telephone interviews, it only resonated with one participant and the majority did not think of other metaphors……what they did express were idioms……..”the crystal ball with all pieces fluttering about” and anxiety and stress are “two sides of the same coin”. An idiom is “ This may not seem like much but if metaphors and idioms are SHARED LANGUAGE and what we use to help CONNECT to our patients then they are actually therapeutic tool, and advanced communication strategies.

21 Relationships of stress and anxiety (reported by participants)
Stress ESCALATES to cause anxiety The majority of participants in phase one used this relationship, that stress caused anxiety. Phase two, there were 7 different relationships from 8 participants. One significant and direct influencer of language is the basic understanding of how anxiety and stress are related – phase one participants framed the relationship of anxiety and stress either as stress escalating to cause anxiety. This is absolutely fundamental in understanding an individuals concept of anxiety and stress: ask them which causes what, and for what functional activity. the relationship between the model / framework we use (or are taught) and how the language translates (the impact) This is where in this reality multiple interpretations co-exist when you are doing patient centered care. I’d argue strongly we need to start with this in conversations whether it be MDT, patients, colleagues – it will influence how you address it. We’ll come back to this when we look at YOUR OPINIONS – as this affects how we interpret the conversation of anxiety and stress.

22 Personal definition of stress and anxiety
When we focus on personal definitions of anxiety and stress, its really good to reflect  on what words resonate with you, and what don’t: you might unconciously have a bit of a BLINDSPOT to certain terminology - I'm writing about this now in my thesis.....  Here is a segment of the E6- list within WMatrix (linguistic software) and how stress is grouped These are semantic families, or lists of words that are closely related. Tizz – is related to anxiety and stress – now, HANDS UP when was the last time you said ‘im in a tizz about….’  Reflect on yourself – what words/language do you use and how do you differentiate/ recognise it in others My nan, she had breast cancer, and she used to say she was 'worked up' over money whilst polishing her brass ornaments furiously.  She never really talked about the cancer, the treatments or her prognosis just more day to day stuff. Have you ever seen Meeper from the muppets? Works with Dr Honeydew..... well, apparently I 'meep' when I'm stressed – definitely some tensions there between personal and profession language there... I blame reflexivity for this bit  We drift in and out of realities: we attempt to go into and understand our patients reality when speaking to them in assessment, and then come out into an MDT meeting to explain your intervention and clinical reasoning, and then might go and speak with our clinical supervisor. You might go home and speak with friends or family about what stressed you at work, and at each interaction, use different words, have different meanings, talk about different realities of anxiety and stress.   Consider slang, local dialect and made up words…….

23 Clinical reasoning OT clinical reasoning around anxiety and stress is IMMENSE -- We piece together all this information, and still manage to motivate and engage people within intervention We’ve not even touched on body language, cultural impact, utterances, humour (sarcasm), the impact of the palliative condition or medications, or other ways in which meaning is affected. Our training helps us cope/manage these challenges – some might say "imperfections", but for others this is just the beauty  of the REAL WORLD....the REAL way we speak with each other, with patients, within systems and services.  Its complicated(!)…...  When you look at CONVERSATION AS A MEANINGFUL ACTIVITIES, we start to have a different viewpoint – its not just an assessment of anxiety (and/or stress) where you are the assessor and your patient is the assessed … The conversation around referral for anxiety or stress can be emotion inducing in itself.  We know this already.  That initial conversation is very important for therapeutic rappor.  We really know this already.  So what? Having sat through this now, and listened would you change anything that you are doing? If so WHY????  If this resonates with you, its likely to be MEANING CHECKING and why have they used anxiety and not stress. The CHALLENGES we face within a therapeutic conversation are immense and all impact on meaning.  By responding to these challenges we add weight and value to our clinical reasoning for WHY we talk about these as DISTINCTLY DIFFERENT INTERVENTIONS and why we have different persectives on the fundamental relationship of anxiety and stress: its because its PERSONAL.  We are delivery person centred care. We change the words we use and the meaning for the audience given the circumstances to use THERAPEUTIC METAPHOR or IDIOMS to reach SHARED UNDERSTANDING. WE ARE FLEXIBLE, WE ARE ABLE TO COPE WITH HUGE CHANGE, WE CAN STILL ADDRESS PATIENT NEEDS by searching for the middle ground, the shared meaning in conversation.  For instance: the meaning of words change with time – how I felt last week is not how I feel the words I use today, even though they are exactly the same(and possibly linked to the same functional activity) they may not hold the same WEIGHT as time has passed and feelings have changed.....its that practical, PRAGMATIC approach we have that helps us deal with realworld complexities like this discourse. There are other pressures, those of large caseloads, time pressures, emotional conversations and fatigue – issues where the pressure affects the language used, speed of conversation and words used. We have to have these ‘super skills’ to deal with the clinical reality we work in. These are advanced communication skills. In all of this, we havent even touched on patients with cognitive difficulties that might get word finding difficulties and who may not be able to articulate the words or meaning, those with emotional intelligence differences, those who choose through life not to be emotional in thought or language.....we are dealing with individuals and we are responding to individuals needs.  Addressing these ambiguities helps us piece together an important jigsaw of our clinical reasoning around the conversation of anxiety and stress

24 Recommendations for best practice (phase one)
Acknowledge ambiguity is possible around anxiety and stress Check: How does the individuals interpret the relationship of anxiety and stress? Encourage ‘Meaning checking’ – what is implied, assumed and framed? Be open to patterns (functional framing) Search for shared meaning – metaphors or idioms In conclusion: My message to you today is: *What you say in clinical practice, what you say to each other , what you write in clinical notes, what you teach, and what you IMPLY OR ASSUME around anxiety and stress MATTERS.  It matters because it can impact on MEANING. And MEANING is MEANINGFUL. (very dr. Seuss....).  This is why we need best practice guidelines specific to this issue of ambiguity around anxiety and stress. The recommendations from PHASE ONE are for you to take away, to help construct the best clinical reasoning you can: As a profession, we need to acknowledge ambiguity is possible, and take ownership of what we say Check reality: what is the individuals interpretations of their relationship with anxiety, stress and meaningful activities? Meaning check Be open to patterns And search for shared meaning and understandings together. THANK YOU ****CUT This ambiguity could affect QUALITY and ACCURACY of communication Support the need for CLINICAL TIME to explore this with our patients..... Include anxiety and stress, or have a good reason for excluding one….. Acknowledge: many factors influence meaning of terminology

25 References Addicott, R. and Hiley, J. (2011). Issues facing commissioners of end of life care. Retrieved from: Archer, D. (2009). Does frequency really matter?. In Archer, D. (Eds.), What’s in a Word-list? Investigating Word Frequency and Keyword Extraction. (pp 1-16). Farnham: Ashgate. Archer, D., Aijmer, K., Wichmann, A. (2012). Pragmatics: An Advanced Resource Book for Students. Oxon: Routledge. Austin, W., Brintell, E.S., Goble, E., Kagan, L., Kreitzer, L., Larsen, D.J., Leier, B. (2013). Lying down in the ever-falling snow: Canadian health professionals’ experience of compassion fatigue. Canada: Wilfrid Laurier University Press. Ballinger, C. and Payne, S. (2000). Discourse analysis: principles, applications and critique. British Journal of Occupational Therapy, 63(12), 566–579. Beauchamp, T.L. and Childress, J.F. (2013). Principles of Biomedical Ethics (7th ed.) New York: Oxford University Press. Bjarnadottir, A. and Lillefjell, M. (2015). Critical Factors in Managing Relationally Demanding Jobs in Care for Very Ill and/or Dying patients: A Phenomenological Study among Public hospital Nurses. Open Journal of Nursing, 5(1). Retrieved from Bowling, A. (2011). Research Methods in Health (3rd ed). England: Open University Press. Brandt, A., Pilegaard, M.S., Oestergaard, L.G., Lindahl-Jacobsen, L., Sorensen, J., Johnsen, A.T. and LaCour, K. (2016). Effectiveness of the “Cancer Home-Life Intervention” on everyday activities and quality of life in people with advanced cancer living at home: a randomised controlled trial and an economic evaluation. BMC Palliative Care. 15(10). DOI: 10:1186/s

26 References Cannon, W. (1932). Wisdom of the Body. United States: W.W. Norton & Company. Care Quality Commission (CQC). (2014). Inequalities and Variations in End of Life Care. London: Care Quality Commission. Care Quality Commission (CQC). (2016). Essential standards of quality and safety. London: Care Quality Commission. Retrieved from College of Occupational Therapists (COT). (2007). Recording CPD: Transforming practice through reflection. Retrieved from: College of Occupational Therapists (COT). (2008). Occupational therapy and stress: advice on how to overcome work-related stress. London: College of Occupational Therapists. (Leaflet). Retrieved from: provide-cost-effective-solutions-mental-health-services#sthash.SLKJfXaP.dpuf College of Occupational Therapists (COT). (2011). The route to success in end of life care – achieving quality for occupational therapy. London: College of Occupational Therapists. College of Occupational Therapists (COT). (2015a). Standard 8: Effective Communication. In: Code of Ethics and Professional Conduct. London : College of Occupational Therapists. Retrieved from pdf College of Occupational Therapists (COT). (2015b). Occupational therapy in the prevention and management of falls in adults: practice guidelines. London: College of Occupational Therapists. Retrieved from guidelines.pdf Cooper, J. (2007). Occupational Therapy in Oncology and Palliative Care. England: Whurr Publishers Limited. Cooper, J. (2014). What is the cancer patient's own experience of participating in an occupational therapy-led relaxation programme? Progress in Palliative Care. 22(4), Retrieved from:

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Input Click on one answer


29 Text “SAMANTHAPYWE831” to 020 33 22 5822 or
Type “” in your web browser 2. Answer the questions 3. Lets talk about it!...... Ok, so lets look at the POLL EVERYWHERE RESULTS – these are of your definitions…… …, OUR SURVEY says !!....  These different answers were take from phase two – they illustrate how we can describe, define and frame the relationship of anxiety and stress in multiple ways. We are not all in one box, we don’t understand things in the same way and I bet you can give examples where you’ve heard someone else use a different relationship or where perhaps you don’t use the relationship you’ve chosen today. It doesn’t make you unprofessional. It means we need to accept the reality there are multiple understandings – this is not just in OT, and when we do we can start to argue the complexity of what we do. *********************************** RECOMMEND Include anxiety and stress in all intervention and service criteria. Explore the conceptual relationship you have (and colleagues/pateitns etc) of anxiety and stress – which causes what

30 It should look like this…..
Will use the results for a small article in OTN….. First: any quick questions – think we have about 10 mins, but I hope we can come back to the Poll everywhere results Points to takeaway: Your relationship with anxiety and stress – did you want to click on more than one answer? Why do some of the answers not resonate with you? What did the people around you choose? And why? Does this change when you talk about certain functional activities (and difficulties) e.g. breathlessness on the stairs Are you aware of key phrases you use in practice or teaching in the conversation around anxiety and stress (do they include metaphors or idioms? Thank you.

31 Reflect on: What is your PERSONAL definition of anxiety and stress
How have you defined these terms in practice What is Anxiety/Stress Management in palliative care? What terms do your patients use when anxious/stressed? Where can YOU now see ambiguity (e.g. media, film etc) How do you normally meaning check in conversation? What language does your community of practice use? What would you change having listened? Please TAKE PICTURE of this slide, and come back to it at a later time (when you are on the train back, after lunch etc…) USE IT as evidence toward your HCPC/what you have learned from being here……

32 Reality: ontology, epistemology, theoretical perspective, methodology and method in context….
/the-research-paradigm- methodology-epistemology-and- ontology-explained-in-simple- language Obtained permissions to use….

33 Phase two results: interviews
8 participants Semi-structured telephone interviews early 2015 (before mat leave) FABULOUS content thank you to all participants MaxQDA - currently coding (thematic analysis Braun & Clarke, 2006) * MaxQDA – reccomended by my NIHR research colleagues – qualitative research tool significantly easier to use than NVivo – 2 week trial – try both if you are at that stage * Working on a model of perspective – trying to record on one sheet of paper how multiple realities can exist, but how their meanings can be so different/influence mearning within the model.

34 Sneak preview of interview data
Idioms v. metaphors - 'Two sides of the same coin' 'Crystal Maze'….everything fluttering about ‘Tailor our language to suit the patient' - use what fits..... Shame, invisible weight of anxiety and stress Different cause and effect relationships of anxiety and stress Since we are among friends, I brought a sneak preview and thought you might like to look.....  The whole point of this was to create best practice guidelines for person centred care, to do this we need to be open to the possibility of discourse and ambiguity, and the reasons why. Phase one: found metaphor (clouded, I found sandstorm in the literature), then in phase two participants rejected metaphor by oh boy did they use idioms, and came out with some beautiful ones – two sides of the same coin, crystal maze. Phase two: themes around shame, emotional burden or weight, a lot to do with invisibility. Really resonated because a professional fear is of being invisible. The invisible therapist dealing with invisible issues that are multidimensional in nature (and we are talking about multiple realities existing at once) – sounds like our profession is made up of superheros?!!! The final point, for me certainly gives food for thought....and fuel for question time at the end here.  Phase one: statistically, worry was the most statistically significant word. Phase two, worry really resonated with participants as a CONNECTION word with patients. HOWEVER, one participants reality was that perhaps worry is not the word to use, and implied (my interpretation) that it could be perceived as unprofessional.

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