This afternoon the Canadian Pain Society (CPS) hosted a webinar, via ZOOM, on “Early Life Adversity and Pain” with several outstanding talks. There was also a fantastic question and answer, or Q&A, discussion along with a very active online text-based ‘chat’ throughout the webinar.
The first talk was presented by a Patient Partner and devoted advocate for people living with chronic pain – and someone I’m proud to call a friend; Billie Jo Bogden, past Co-Chair of the Chronic Pain Network‘s Patient Oriented Research Committee. You can follow her over on Twitter at @BogdenJo. She:
has a background in policy, communications and intergovernmental affairs.
She is currently working on a collective action project to address gaps in education and awareness both within the health care sector and the community.
Advocating for patient rights, she supports a more active participation in the development of patient treatment plans and the integration of care for patients living with chronic pain.” (1)
The moderator for this online event was Dr. Melanie Noel (on Twitter at @MelanieNoel), “an Associate Professor of Clinical Psychology at the University of Calgary and a Full Member of the Alberta Children’s Hospital Research Institute and the Hotchkiss Brain Institute. She directs the Alberta Children’s Pain Research Lab.” The other presenters were:
. Dr. Nicole Sherren, who “has a PhD in Neuroscience and moved to Alberta in 2003 to hold an Alberta Heritage Foundation for Medical Research/Neuroscience Canada research fellowship at the University of Lethbridge. Her research expertise includes experience-based brain development, neurodevelopmental disorders, and brain plasticity.” (1)
. Dr. Marco Battaglia, “a Full Professor of Psychiatry at the University of Toronto and the Associate Chief of the Division of Child Youth and Emerging Adult Programme at The Centre for Addiction and Mental Health. His interests fall broadly into Developmental Psychopathology and Genetic Epidemiology.”(1)
. Dr. Sheri Madigan, an “an Associate Professor and Canada Research Chair in Determinants of Child Development at the University of Calgary and the Alberta Children’s Hospital Research Institute. Dr. Madigan… is also interested in understanding why some children show resilience to adversities, while others remain vulnerable.”(1) You can follow her on Twitter at @sherimadigan.
Restricted access
As you can see, it was a full house of people specializing in chronic pain and in helping others who live with persistent pain. A recording of this webinar is available at no cost to members of the CPA, but otherwise there is a fee to watch it. For that reason, I can’t share any of the information from this webinar here on my blog; it was a ‘restricted access’ event.
What I can do, though, is share with you some of the comments that were posted to Twitter during the event – because those are public. I’m very careful, by the way, to only post general information about these pay-walled (pay-to-view) events to avoid infringing on any copyright or legally-protected information…
I hope that someday all health research and information derived from and potentially affecting patients will be freely accessible to them, but we’re not there yet. Throughout my career in bioethics and patient privacy protection – long before I became a chronic pain and rare disease patient myself! – it was one of my ‘pet peeves’ that patients who participate in research are only rarely told what these studies found.
Medical and scientific journals are too often pay-walled, locking information up and making it accessible only to folks who can afford a buy it. The same goes for all the pay-walled conferences and webinars in which these research findings are shared and discussed only among healthcare professionals, researchers, and scientists.
One researcher – a Professor of Biomedical Engineering, Computer Science, and Biostatistics at Johns Hopkins University – summed this up very well last year, in Forbes magazine:
Scientific papers are written by scientists (like me), who are largely funded to do their work by governments, non-profit organizations, and occasionally by commercial companies.
The writing is done by the scientists themselves, who submit papers to journals for peer review.
The peer reviewing is also done by scientists (again, like me) who do this work for free. The journals pay nothing for all this work.In other words, we do all the work for free, using funding provided by the public, and the journals then take that work and sell it for a very tidy profit.” (2)
Steven Salzberg; in Forbes
Limited sharing of information
As I mentioned above, there is some information that I can share with you – despite the restricted access to this webinar. I’m going to share some very general information relating to the webinar, for example things that were posted to Twitter which is a public forum for information sharing. And I’ll share some of the comments that I made during the chat portion of this event; I figure that if they’re comments that I wrote, then technically I own them ‘-)
I can also share links to some of the published, sometimes pay-walled, journal articles that were discussed during this ZOOM webinar. From the event title, “Early Life Adversity and Pain”, it’s obvious that we were discussing the impacts of negative childhood experiences on a person’s later experiences of pain. This is particularly important for chronic pain, because:
Adverse childhood experiences (ACEs) are common occurrences that are related to poor health outcomes, including chronic pain, in youth and adults.” (3)
Beveridge, Dobson Madigan et al; in Pain Reports
Childhood trauma and chronic pain
During the text-chat online discussion taking place within this webinar, several clinicians and researchers questioned whether it’s worthwhile to take ACEs into consideration as part of their overall assessment of chronic pain patients. They were doubtful about the incidence – what proportion of – adult chronic pain patients were survivors of traumatic childhoods, particularly child abuse.
My response to those comments – based on the one-on-one pain patient peer support that I provide, as well as conversations with groups of patients and others at a variety of events and meetings (pre-pandemic, of course) – was that:
In discussions among chronic pain patients, childhood abuse, neglect, and trauma loom large – however many individuals refuse to disclose this to their healthcare professionals for fear of being labeled; as “victim” versus “survivor”, as “likely to be a substance abuser” versus “deserving of pain management including meds”, etc.
Sandra Woods, during text-chat of Canadian Pain Society webinar; “Early Life Adversity and Pain”
Also, many adult survivors of childhood abuse have never disclosed this to their families and fear that their loved ones would somehow find out.”
At this point, are you wondering how there could be a link between childhood abuse and adult experiences? That’s a great question, and it turns out that one of the presenters at this webinar, Dr. Sheri Madigan, provided a good explanation of this in The Conversation Canada:
When children are exposed to abuse and adversity, they experience heightened levels of stress without a strong support system to help them through these difficult experiences.
This is often referred to as “toxic stress.”This stress is different from the tolerable types of stress that can help with development — such as learning to make new friends, going to a new school or taking a test.
Experiencing high levels of toxic stress during abusive or traumatic experiences can alter how our brain and body process future experiences and stressful events.
Madigan, Racine, and Tough; in The Conversation Canada
Toxic stress impacts how we think and learn.” (4)
One of the presentations during the webinar described a teenager who was sexually assaulted. This victim of childhood sexual abuse was then disbelieved by her own mother, as well as by healthcare professionals. Not only does the child experience a sexual assault, as a major trauma, they then experience the added trauma of not being believed.
There is a sense of betrayal there, and a lack of trust. The child learns not to trust its own mother, not to trust healthcare professionals; often the entire healthcare system becomes a symbol of distrust for the child.
This portion of the webinar also spilled over into the online text-chat comments, as you might imagine. Once again – drawing on my personal experience and conversations – I replied to a number of those individual comments from clinicians, researchers, healthcare students and trainees, and even other chronic pain patients.
Because I can’t quote the other attendees’ comments, which are part of the pay-walled webinar, I’ll provide a summary of my replies to those comments. I think you’ll be able to read between the lines, and to capture the essence of the multitude of comments that were made during this part of the webinar:
Her story resonates with so very many adults who live with chronic pain… talk about trauma being perpetuated by our healthcare system and making a tough situation worse 🙁
Sandra Woods, during text-chat of Canadian Pain Society webinar; “Early Life Adversity and Pain”
Happens all the time.
First off, every single non-male chronic pain patient/person I know has been disbelieved by at least one healthcare professional…
Now add to that a background of having childhood trauma that was dismissed, ignored, etc. and you have a perfect storm of distrust – on both sides of the patient-healthcare interaction…
And this prevents true therapeutic relationships from developing…
This is why patient-peer support is soooo important, and why both Billie Jo and I have ended up doing this one-on-one… because patients will trust patients and open up to us, so that we can try to help them get help.
But it is DIFFICULT, e.g. I can only do this because I don’t have concomitant depression or anxiety. Supporting other patients as a peer involves in many ways taking on some of their pain, to be empathetic and “safe” for them.
Endo, fibro, CRPS = All conditions in which women are STILL being dismissed rather than diagnosed… One of my key phrases = “Dismissed, not diagnosed”…
If it was men, though, they’d be in the ICU!!
My bioethics perspectives has kicked in on this conversation, although it’s often a very thin line between my ‘pain patient’ and ‘bioethics’ views…
Has anyone done research into whether patients whose pain experience has been dismissed or disbelieved – by healthcare professionals – demonstrate lower resilience levels downstream?”
Trauma-informed care
There is some good news on the horizon, though, for survivors of childhood abuse and trauma. Nothing can ‘cure’ a person’s past, but people working in healthcare do have some new tools to help them better care for adult survivors of adverse childhood experiences. An important part of the webinar was a presentation on one of the newer concepts in medicine and healthcare; trauma-informed care.
This is a particularly important concept for doctors, nurses, and others who treat chronic pain patients, although it’s best when principles of trauma-informed care are fostered as an integral facet of a hospital’s or clinic’s culture and procedures. What is it? That’s a fantastic question!
In addition to affecting underlying physiology, health behaviors, affect and pain itself, trauma can and does influence the way people interact with the healthcare system. For example, persons with trauma histories can be sensitive to power differentials. Accordingly, the hierarchical nature of traditional provider/patient interactions may be triggering. Physical exams, requirements to wear hospital gowns, invasive procedures and tests, and well meaning, but forceful recommendations can all be reminiscent of prior traumatic episodes. Busy offices, rotating providers, televisions blaring the news, lack of privacy, provider gender/body language–even temperature can contribute to feeling overwhelmed and lacking control.
Driscoll, Adams, and Satchell; in Practical Pain Management
Accordingly, persons with trauma histories may shut down or withdraw during appointments. They may avoid appointments altogether, anger easily, become emotional, fail to follow through with recommendations, struggle to adopt and maintain prescriptions for healthy behavior change, and/or engage with medical teams during times of acute crisis then disappear once stabilized only to emerge again months later when in crisis again.
Unfortunately, when these interactions happen, it is not uncommon for providers to assume that “non-adherence” is a sign of disinterest, lack of motivation, or failure to take pain seriously. Similarly, providers may assume that displays of anger signal manipulation or rudeness, which is often met with dismissal. Withdrawing during an appointment is often taken for disinterest when in fact the patient may be triggered and trying desperately to self-soothe.” (5)
Key assumptions & principles
A leader in the implementation of trauma-informed care has been the US government’s Substance Abuse and Mental Health Services Administration (SAMHSA). Their 27-page guidebook “SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach”, published back in 2014, is a good foundation for implementing this type of practice in a clinic or hospital setting.
It fully explains that the “concept of a trauma-informed approach is grounded in a set of four assumptions and six key principles.” (6) Before we take a look at these key assumptions and principles, let’s consider how SAMHSA defines trauma in the sense of these types of patient-centred care frameworks:
Individual trauma results from an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual well-being.” (6)
SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach
As an easy reminder or mnemonic for this definition, they suggest the “Three E’s of trauma”; event(s), experience of event(s), and their effect(s). At this point, it should be clear that we’re discussing life-changing trauma. The webinar “Early Life Adversity and Pain” took these approaches and applied them specifically to people living with chronic pain conditions, but the SAMHSA definition applies to many other patient populations and illnesses.
Now let’s consider the assumptions and principles that are key to trauma-informed care. First off, the assumptions are the “Four Rs” of their approach, applied to healthcare settings; realization, recognition, response, and resisting re-traumatization. So, after the 3 Es come the 4 Rs:
A program, organization, or system that is trauma-informed realizes the widespread impact of trauma and understands potential paths for recovery; recognizes the signs and symptoms of trauma in clients, families, staff, and others involved with the system; and responds by fully integrating knowledge about trauma into policies, procedures, and practices, and seeks to actively resist re-traumatization.” (6)
SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach
That makes sense, right? It instinctively seems to be a good idea that a hospital, clinic, or other healthcare centre should actively avoid re-traumatizing their patients by putting measures in place to prevent this! As with everything else in healthcare though, it’s easier said than done.
The same, of course, applies to the six key principles that SAMHSA lays out as being necessary for the implementation of trauma-informed approach within healthcare settings – these can all be viewed from the perspectives of both the patient and the healthcare professional:
- Safety
- Trustworthiness and transparency
- Peer Support
- Collaboration and mutuality
- Empowerment, voice and choice
- Cultural, historical, and gender issues” (6)
Developing a trauma-informed approach requires change at multiples [sic] levels of an organization and systematic alignment with the six key principles described above” (6)
SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach
What to remember
Because this webinar lasted for almost two hours, there’s no way that I can summarize all of it here. Nor, because the event was pay-walled, would I be allowed to. I do hope, though, that I’ve been able to provide you with a good overall summary of some of the important points; mostly by referring to research that’s already been published on the topics discussed during the webinar.
Whether you’re a person who lives with chronic pain, or someone who treats patients dealing with persistent pain conditions, please consider trauma-informed care as an important approach in preventing healthcare from re-traumatizing patients.
Just as the use of sterile gloves has become a standard universal precaution in healthcare, so too should the provision of trauma-informed practices, especially in the treatment of persons with pain.
Driscoll, Adams, and Satchell; in Practical Pain Management
Trauma-informed care is a way of approaching patient care that seeks to establish safety, trustworthiness, choice, collaboration, and empowerment.
It requires attention to the physical environment, patient preferences, and a willingness to anticipate, identify, and address specific facilitators and barriers to an individual’s care.” (5)
Finally, back to my ’pet peeve’; wouldn’t it be great if you could have simply watched this webinar for yourself? Or if you could view the recording of this session? Unfortunately, pay-walls and restricted access to information in healthcare, medicine, and the health sciences often restrict access to the few people who can afford to pay the fees – or to those who work in organizations which pay for institutional memberships or subscriptions..
For people like me, for patients like me, these financial barriers can be an insurmountable challenge in accessing information. Another challenge, on top of all of those inherent in living with chronic illness – and, in the case of this specific webinar, with chronic pain.
It’s long past time to change the archaic, closed-access policies that have kept medical and scientific results – results that were funded by the public – locked behind the paywalls of for-profit publishers.” (2)
Steven Salzberg; in Forbes
On that note, thanks so much for stopping by – as always! I wish you health as good as it can be, safety, and well-being as we approach a holiday season during a time of pandemic concerns, fear, and worry. Please do your best to keep yourself safe, and your loved ones.
My husband and I have already decided to forego any potential get-togethers with friends and loved ones this year, in case either of us may have COVID-19 but not yet be showing any symptoms. We love our families and friends too much to risk spreading this illness to them… but that doesn’t mean that we won’t miss them!
So to my family members and dear friends, if you’re reading this; I already miss you! Please keep safe, so we can all see each other sometime in the new year…
References
(1) Canadian Pain Society (CPS). Events (Webpage): Early Life Adversity and Pain. 2020, undated. Online. Accessed 02 Dec 2020:
https://canadianpainsociety.ca/event-4057920
(2) Salzberg, Steven. Highly Profitable Medical Journal Says Open Access Publishing Has Failed. Right. Forbes (magazine): Forbes Media LLC. 01 Apr 2019. Online. Accessed 02 Dec 2020:
https://www.forbes.com/sites/stevensalzberg/2019/04/01/nejm-says-open-access-publishing-has-failed-right/?sh=30cc01306a44
(3) Beveridge, Jaimie K.; Dobson, Keith S.; Madigan, Sheri; Yeates, Keith O.; Stone, Amanda L.; Wilson, Anna C.; Salberg, Sabrina; Mychasiuk, Richellea; Noel, Melanie. Adverse childhood experiences in parents of youth with chronic pain: Prevalence and comparison with a community-based sample. PAIN Reports. Nov/Dec 2020. Online. Vol 5, Issue 6, p e866. (doi: 10.1097/PR9.0000000000000866). Accessed 02 Dec 2020:
https://journals.lww.com/painrpts/Fulltext/2020/12000/Adverse_childhood_experiences_in_parents_of_youth.6.aspx
(4) Madigan, Sheri; Racine, Nicole; and Tough, Suzanna. How compassion can triumph over toxic childhood trauma. The Conversation Canada: Academic Journalism Society. 04 Apr 2018. Online. Accessed 02 Dec 2020:
https://theconversation.com/how-compassion-can-triumph-over-toxic-childhood-trauma-90756
(5) Driscoll, Mary; Adams, Lynette; Satchell, Jacqueline. Optimizing Care Using a Trauma-Informed Approach. Practical Pain Management. Vol 20, Issue 3, p 29-31. Updated 10 Jun 2020. Online. Accessed 02 Dec 2020:
https://www.practicalpainmanagement.com/treatments/psychological/optimizing-care-using-trauma-informed-approach
(6) Substance Abuse and Mental Health Services Administration (SAMHSA). SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach. HHS Publication No. (SMA) 14-4884. Rockville, MD: Substance Abuse and Mental Health Services Administration. Jul 2014. Online. Accessed 02 Dec 2020:
https://ncsacw.samhsa.gov/userfiles/files/SAMHSA_Trauma.pdf