conversations

Having The Conversation…


Over the past few weeks I’ve been posing some of the curly questions that I don’t think have yet been answered in pain rehabilitation. In fact, some of them have yet to be investigated in any depth. Today I’m stepping out into the abyss to offer my current thoughts on one question that has been rattling around for some time: how do we have a conversation about pain and its persistence? I want to begin by stating very emphatically, that I do believe pain can change. And that the way a person views or interprets their experience can change, and there is reversibility in pain intensity and quality. Having a conversation about persistence doesn’t mean pain will inevitably hang around. So why talk about it?

One major reason comes from people living with pain. In a recent book (Meanings of Pain) I quoted several qualitative studies where “pain acceptance” and conversations about this were highly valued by people with pain – in fact, in my own research, learning that pain would either likely remain in its current form, or would be a feature in some way, was part of a turning point (Lennox Thompson, Gage & Kirk, 2019). The turning point was away from pursuing pain reduction as a primary goal, and towards living a life. “And then I finally said to myself, nothing’s going to work. I might as well try to live with it, and learn to live with it, and since then I haven’t tried pursuing any type of pain relief” (Henwood, Ellis, Logan, Dubouloz & D’Eon, 2012), “All the previous treatments dealt with taking
away the pain. This is the first time one gets a treatment that focuses on acceptance of the pain, and you really understand that this is chronic pain that will never disappear; it’s the first time one has received the message from this angle”
( Pietilä, Stålnacke, Enthoven, Stenberg, 2018)

I guess I don’t see this as a dichotomous choice. It’s not simply “pain reduction” OR “pain acceptance”. I think we can have more than one goal. It’s a matter of emphasis, where energy gets spent. Mark Sullivan and Betty Ferrell argue that health professionals need to reconceptualise their contribution to health: is it to treat disease, or to “advance the person’s capacity for personally meaningful action?” (Sullivan & Ferrell, 2005).

The issue is, that doing what matters can mean “doing what matters provided that pain isn’t present”, or “doing what matters provided that pain has gone”, or “doing what matters provided that it feels good”.

Back to the conversation. The purpose of the conversation is to allow some wiggle room around the “provided that”. Because, in the pursuit of pain reduction life can pass by. Jobs go, relationships fail, kids grow up and leave home, expertise and capability become obsolete, mates develop new pursuits and meanwhile, as people living with persistent pain have said, they’re living in “limbo land”. Reconnecting with values-based activities as one way to feel more whole again often means navigating the meaning of pain fluctuations. It can mean developing ways to allow pain to be present without trying to change the experience, or escape the experience.

Guiding the conversation

I routinely use guided discovery as my main form of therapeutic communication. My approach to The Conversation is to begin by finding out about the person’s theory of their pain – what do they think is going on? What have they been told and what sense have they made of this? What has it been like to have this experience bring attention to daily movements and activities? How are they going about daily life? What’s helped, what hasn’t? What have they given up? What new things have they had to do? What’s that been like?

I usually jot down the good and not so good of all of this – it helps to have a record both for the person and for me. I like to reassure people that they’re doing their very best in what can feel like an unrewarding endeavour. I also explore the impact of treatments on the person. What is it like to take medications, do exercises, have to make time to attend appointments? What is it like to tell one’s story to so many people – who often don’t reciprocate?

Drawing from both my clinical experience and from what I’ve learned about ACT (Acceptance and Commitment Therapy), I offer people a chance to reflect on the impact of not only pain, but also the process of getting treatment. On the work that goes into rehabilitation. I ask them what sense they make of life at the moment. What do they take from all of this?

And in that moment I also ask about what’s important in life. What matters. And how well is that person able to do at least something of what matters in their life? And is it possible to move towards doing more of what matters in life even in the presence of pain? And what sense does the person make of all we’ve discussed?

If I’m asked about whether pain will go, I am open about the possibility that it will not completely vanish. This reflects my understanding of neuroscience, the many many studies into all kinds of treatments, and from the words of people in qualitative studies who indicate that this is an important acknowledgement. I’m also not suggesting that anyone stop participating in pain reduction efforts, not at all. It’s not my decision. It’s never our decision – it’s the person with pain who must decide. I will point out, though, that I don’t think living well with pain is often offered to people as a positive option. It’s often delivered as “well if this doesn’t work, you can try doing some pain management”. Not exactly a ringing endorsement. Not even a neutral suggestion.

The Conversation isn’t about stopping treatment. It’s not about pain reduction vs pain management. It’s not about pain persistence as much as it is about ensuring rehabilitation focuses on what matters to people. For rehabilitation is not about eradicating the disease that caused the problem, it’s about restoring and optimising capabilities, enabling people to participate in their own lives as much as possible. Sometimes, in the pursuit of restoring capabilities, perhaps participating in life is forgotten.

Henwood P, Ellis J, Logan J, Dubouloz C-J, D’Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: a qualitative approach. Pain Manag Nurs. 2012;13(4):215–22.

Lennox Thompson B, Gage J, Kirk R. Living well with chronic pain: a classical grounded theory. Disabil Rehabil. 2019:1–12.

Pietilä Holmner E, Stålnacke B-M, Enthoven P, Stenberg G. The acceptance. J Rehabil Med. 2018;50(1):73–9.

Sullivan, Mark, & Ferrell, Betty. (2005). Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. The Journal of Pain, 6(1), 2-9.

The know-do gap: does social media help change things?


This post is prompted by a Facebook post from Connor Gleadhill asking “in what way is SoMe contributing to knowledge translation (KT)? I’m interested in the experience of those tagged and if anyone is aware if it has been rigorously tested. As far as I’m aware it hasn’t. Is it simply a confirmation bias arena? We are humans after all, and we curate our experience on SoMe.”

Oh such a great question and one reason I still hang out on social media!

I’ve been blogging since 2007, two years before the famous Body in Mind (who have just announced they won’t post any more content). Over that time I’ve risen to the top of the blogs, then plummeted down to my current level. Yet I still have a passion for doing this (usually) weekly post.

One reason I post is in answer to Connor Gleadhill’s question: one method for translating knowledge from journals into clinical practice is through online content. Content that’s accessible (not behind a paywall). Content that offers an opinion. Content that (hopefully) translates a-contextual information into a context more familiar to clinicians.

Is there evidence that knowledge translation occurs in this space or is it all a vast echo chamber where we listen to ourselves and pretend that everyone who is anyone agrees?

Well, in the pursuit of understanding this phenomenon, I’ve been researching the research looking at the effectiveness of one form of social media: the community of practice. A community of practice is a concept developed by Wenger yet one that has (probably) existed since humans took up tools and started learning from each other. It’s a place where “groups of people … share a concern or a passion for something they do and learn how to do it better as they interact regularly.” Senior or recognised “expert” members of the group provide experiential knowledge to guide junior or “apprentice” members as they learn how to … the “how to” depends on the group. In my case, it’s a group devoted to learning how to apply a multifactorial model of pain into diverse areas of clinical practice.

The group I’m part of is unusual in that it has emerged organically, not having been established artificially for the purpose of studying it. I’ve written a paper on the findings from a study of this group, to be submitted shortly. So when I talk about “effectiveness” I have to refer to artificial studies where communities of practice have been examined. One integrative review by Rolls, Hansen, Jackson and Elliott (2016) found 77 studies consisting of 44 qualitative papers, 20 mixed methods studies, and 8 literature reviews. The range of social media used was wide and included Listservs (remember them?), Twitter, “general social media” (not sure what that really means!), discussion forums, Web 2.0, virtual communities of practice, wiki, and Facebook. The clinicians involved included medical practitioners, multidisciplinary specialty group, health care professional “in general”, midwifes, nurses, and allied health professionals. The study found that:

…social media use is mediated by an individual’s positive attitude toward and accessibility of the media, which is reinforced by credible peers. The most common reason to establish a virtual community was to create a forum where relevant specialty knowledge could be shared and professional issues discussed (n=17). Most members demonstrated low posting behaviors but more frequent reading or accessing behaviors. The most common Web-based activity was request for and supply of specialty-specific clinical information. This knowledge sharing is facilitated by a Web-based culture of collectivism, reciprocity, and a respectful noncompetitive environment. Findings suggest that health care professionals view virtual communities as valuable knowledge portals for sourcing clinically relevant and quality information that enables them to make more informed practice decisions.

Rolls, Kaye, Hansen, Margaret, Jackson, Debra, & Elliott, Doug. (2016). How Health Care Professionals Use Social Media to Create Virtual Communities: An Integrative Review. Journal of Medical Internet Research, 18(6), e166. doi: 10.2196/jmir.5312

Heidi Allen and colleagues (2013), from Body in Mind, found that by releasing papers on social media, there was an increase in dissemination of those papers. Chan and colleagues (2018) also identified that there was much “scholarly engagement” through online interactions. There are detailed analyses of the social construction of knowledge online (Gunawardena, Flor, Gomez & Sanchez, 2016), studies of how acceptable social media knowledge translation is amongst health researchers and clinicians (Tunnecliff, Illic, Morgan, Keating, Gaida, Clearihan et al 2015), and examination of patient’s use of social media (Antheunis, Tates & Nieboer, 2013).

Social media can “democratise” information. Because social media is readily accessible across so many forms and devices, and because there is greater opportunity to interact with authors, and the numbers of people seeking health info, social media allows more information flow than journal articles or conferences. There’s always a risk in that: loud voices, those with marketing smarts, those with a punchy delivery and especially those with a controversial message will attract more attention than, for example, my long form writing on complex topics.

Reader beware must also be the motto. Info dumping a load of references tangential to the actual topic, along with little, if any, critical analysis of that material, can lead to what appears to be authoritative content, but may perpetuate unhelpful and outdated ideas.

I continue blogging because it helps me sort my ideas out. I find it helps me “construct” and assemble what I know into something I can then apply. It helps me sift through the overwhelming wealth of research pouring out of Universities and research groups everywhere around the world. As I look at the over 1100 posts I’ve written, I can see the issues I’ve pondered, and the stance I take on issues such as communication, respect, thinking before adopting a new treatment, clinical reasoning, collaboration. Many of these are attitudes towards people who live with pain.

The things I most appreciate about social media are that I have a network of people with whom I can nerd out. People who do “get it”. People who may not agree with me but who are willing to entertain alternative views. People who push me to learn about areas I wouldn’t normally. People who live with pain who inspire me. People for whom I have great compassion because of their personal stories. I have a sense of community. A real assemblage of people I can turn to when I have questions.

In answer to the question “Does social media contribute to knowledge translation?” I would say it is as effective as the readers and contributors make it, possibly more effective than attending a conference (the best part is always the social isn’t it?!), certainly more useful for generating clinical discussion than a publication locked up in a journal, and as long as conversations remain respectful and discuss ideas and not personalities, it’s an effective way for clinicians to construct knowledge for their practice setting. I’m still going to blog even if my average reader numbers in the last week were a measly 100 people.

Allen, Heidi G, Stanton, Tasha R, Di Pietro, Flavia, & Moseley, G Lorimer. (2013). Social media release increases dissemination of original articles in the clinical pain sciences. PloS one, 8(7), e68914.

Antheunis, Marjolijn L., Tates, Kiek, & Nieboer, Theodoor E. (2013). Patients’ and health professionals’ use of social media in health care: Motives, barriers and expectations. Patient Education and Counseling, 92(3), 426-431.

Chan, Teresa, Trueger, N Seth, Roland, Damian, & Thoma, Brent. (2018). Evidence-based medicine in the era of social media: Scholarly engagement through participation and online interaction. Canadian Journal of Emergency Medicine, 20(1), 3-8.

Gunawardena, Charlotte N, Flor, Nick V, Gómez, David, & Sánchez, Damien. (2016). Analyzing social construction of knowledge online by employing interaction analysis, learning analytics, and social network analysis. Quarterly Review of Distance Education, 17(3), 35.

Tunnecliff, Jacqueline, Ilic, Dragan, Morgan, Prue, Keating, Jennifer, Gaida, James E, Clearihan, Lynette, . . . Mohanty, Patitapaban. (2015). The acceptability among health researchers and clinicians of social media to translate research evidence to clinical practice: mixed-methods survey and interview study. Journal of medical Internet research, 17(5).