Chloë G. K. Atkins

I have recently initiated The PROUD (Phenomenological Research/Remedies On Unemployment and Disability) PROCHE [Phénoménologique (recherches et résolutions) aux chômage et handicapées] Project, which is a four year research effort, funded by the joint Social Sciences and Humanities Research Council and Department of National Defence Research Council Initiative.
The PROUD PROCHE Project is a bilingual study exploring the successful employment of adults with disabilities in Canada, the US, England, France and Belgium.
It will be interviewing employees with disabilities and, their employers, about the behaviours and conditions which allow them to subvert the obdurate trend against hiring disabled persons.
Currently, I will be working alongside a post-doctoral fellow, Andrea Whiteley, who recently received her PhD in Communications from the University of Calgary. Dr. Whiteley has long and robust experience in undertaking this type of phenomenological research. Whiteley’s PhD thesis examines the problem of “open access” of social science and humanities information and, she has an expertise in knowledge dissemination and translation.
We will be hiring other members of the project in the coming years as needed.
From interviews in multiple jurisdictions, we hope to glean “best practices” in terms of integrating qualified disabled adults into the workforces of liberal democracies. All of these countries have adopted laws aimed at encouraging the inclusion of disabled workers but ongoing data indicates that these statutory efforts have not yielded concrete results — the low rates of employment among qualified adult persons with disabilities remains unchanged or falling. Through our research, we intend to renew and renovate approaches to the substantive inclusion and integration of employees with disabilities in workplaces, as well as in broader socio-economic communities.
The PROUD PROCHE Project is located in the Department of Political Science, Highland Hall Rm: HH584, Scarborough College, University of Toronto.

Please feel free to contact me at: chloegk.atkins@utoronto.ca if you have questions, information or, contributions to be made to The PROUD PROCHE Project.

We welcome input.

Best wishes for the spring!

Here is a link to my articles which are available on Chloë G. K. Atkins on ResearchGate.
This provides a way to access my articles on one site.

Warm weather has arrived at my location on this beautiful planet — It surely is spring!

For those interested in MUPS, I’ve just published an article in The American Journal of Bioethics (26 April 2018) in response to Dianne O’Leary’s featured article: “Why Bioethics Should Pay Attention to Patients Who Suffer Medically Unexplained Symptoms”
You can find my response to her piece here:
Why Bioethics Should pay Attention to Patients Who Suffer Medically Unexplained (Physical) Symptoms _ A Discussion of Uncertainty, Suffering and Risk.

I’d love to learn your thoughts and opinions about this piece and anything else I’ve researched or written.

I’m currently on leave from the University of Calgary.

And I’m preoccupied with a number of intense personal and professional projects — some of which have were unanticipated and fell into my lap and, others resulted from more planned activity.

Please feel free to contact me if you feel so inclined.

Wishing you well for the moment!

CGKAtkins

With the New Year upon me and the light returning to the northern hemisphere, I’ve embarked on two new projects during the past few months:

1. a project which employs the phenomenological approaches I used in my MUPS research and applies them to the problem of the under and unemployment of persons with disabilities in liberal democracies. It is well known that despite the renovation of constitutions, statutes and regulations, the rate of employment among adults with disabilities has remained unchanged. This project does not want to revisit this ongoing failure (e.g., 93% of ADA employment challenges for accommodation side with the defending employers) but rather seeks to discover what conditions actually assist with the hiring and retention of these individuals. I will interview employees with disabilities and employers who hire and oversee them to unearth what makes it possible to have disabled adults in the workplace. The outliers’ personal experience will provide the material for gleaning “best practices” in encouraging the participation of disabled adults in the workforce. As an interdisciplinary scholar it is apparent that the legal reforms and the invocation of formal human rights are not enough, we need to promote the appropriate conditions which allow adults with disabilities to fully participate in the workforces and economies of their countries. This project will interview employed individuals with disabilities and their employers in Canada, the US, the UK, France and Belgium.

2. a book length manuscript which examines the genetic, social and psychological origins of disease and kinship behaviour in one family over several generations. The family has connections to the “Quebec Founder Population,” which has recently been identified in epidemiological research. This exciting piece is a collage of interviews, first persona and second person narratives, visual images, archival sources and, medical, social science and scientific research.

If you’re interested in either of these efforts and or my work in the area of MUPS and patent advocacy and human rights for the vulnerable, please feel free to contact me.

Best wishes for 2018 – may it go well . . . .

While our CIHR study investigating MUPS is now long finished, we are still publishing results from our work.
Our latest article was recently published in the BMJ Open journal. Keith Brownell, MD, Professor Emeritus of Clinical Neurosciences & Medicine, (University of Calgary) is the primary author.
It is entitled “Clinical Practitioners Views on the Management of Patients with Medically Unexplained Physical Symptoms (MUPS): A Qualitative Study.” (Brownell AKW, et al. BMJ Open 2016;6:e012379. doi:10.1136/bmjopen-2016-012379)

While this article speaks to clinicians in particular, it can be accessed by anyone who wishes to read it by clicking on the above link.

As the new year emerges, I hope that further opportunities to discuss and explore the problem of MUPS will occur.

Please feel free to contact me or any of the article’s authors via the comments section on this website or more directly via email.

Best wishes for 2017.

We have completed our CIHR Ethics Catalyst project on MUPS (Medically Unexplained Physical Symptoms). All four members of the interdisciplinary research team are writing articles which capture their specific perspectives on the qualitative data (i.e., neurology, general practice, medical sociology and political thought).

We’ve had 2 successful publications so far:

– Kornelsen, Atkins, Brownell and Woollard. “The Meaning of Patient Experiences of Medically Unexplained Symptoms.” Qualitative Health Research 1-10. 1049732314566326, first published on January 12, 2015.

-Atkins, Brownell, Kornelsen, Woollard and Whitely. “Silos of Silence, Stress and Suffering: Patient And Physician Experiences of MUPS and Diagnostic Uncertainty.” Special issue of American Journal of Bioethics: Neurosciences 4:3 (July-Sept 2013).

A 3rd article is undergoing peer review:
– Brownell, Atkins, Kornelsen and Woollard.“Managing Patients With Medically Unexplained Physical Symptoms (MUPS): Lessons Learned From The Front Lines.” Under submission.

We are working on 2 other pieces: one on the ontology of MUPS and the other about undergraduate and clinical education and MUPS.

In addition to publishing our results, I am considering new directions for MUPS research. I am thinking, in particular, of examining pediatric cases of MUPS and the difficulties that physicians, children and substitute decision-makers (i.e., parents, guardians,etc.) face when confronted by uncertain diagnoses.

I hope that those individuals who took part in our study, will read the above mentioned papers and provide any feedback which might assist in framing future investigations into uncertainty in clinical diagnosis.

I will be presenting, on behalf of our research team based in Vancouver and Calgary, at the annual meeting of the Canadian Bioethics Society.

We have completed our the bulk of our pilot qualitative study on MUPS – Medically Unexplained Physical Symptoms. We have interviewed both patients and physicians about their experiences of MUPS. We have transcribed and collected data from the interviews. We then analyzed the material and and have published one preliminary article, submitted another for publication and, are in the midst of writing 3 more articles.

The Canadian Bioethics Society will be meeting in Vancouver 28 -31 May 2014 at the Renaissance Vancouver Harbourside Hotel. CBS will celebrate its 25th year of meeting and the theme is “Looking Back; Looking Forward.” Our session will take place in the 5F time slot on “Clinical Ethics- Workshop and Concurrent Session” on Friday 30 May 2014 at 4-5pm. I will present an overview of the work that both the Vancouver and Calgary sites have completed and, a broad summary of some of our findings and recommendations. Anyone who is interested in MUPS and the challenge of “uncertainty” in medical diagnoses and health care is welcome to attend. I’m looking forward to presenting and to hearing thoughts and responses from my colleagues and members of the audience.

The first year anniversary of our first publication will take in early July 2014. At that point, we will be allowed by our copyright agreement to post a link to the article on this website and thereby permit members of the public or participants of our study to have access to the paper: “Silos of Silence, Stress, and Suffering: Patient and Physician Experiences of MUPS and Diagnostic Uncertainty” in AJOB Neuroscience, 4(3): 3–8, 2013.

More generally, as each team member works on further analyses and publications, we are scheming about conducting further work in the area of MUPS. Ideally, we would like to establish or collaborate with clinics in Vancouver, Calgary and Toronto in which we could conduct further research into MUPS and probe its effective management. We intend to seek CIHR funding as well as other sources of research and healthcare funding for this effort. Of course, if anyone knows of individuals, institutions or granting agencies who might be interested in our work, please feel free to contact me by leaving a comment to this post or by emailing me at: catkins@ucalgary.ca. I very much enjoy receiving your responses.

On a more personal note, I have moved departments within the University of Calgary and can now be found in the Department of Sociology. I continue to teach in the undergraduate Law and Society Program and teach and supervise students in the “Communication and Culture” graduate programs and will begin toe take on graduate students in Sociology as well. My supervisory and research interests are in the following areas: vulnerability and vulnerable populations; disability studies, human rights, bioethics, narrative and feminist scholarship. My email and telephone contacts remain the same.

I am grateful that the warm weather has finally arrived. I hope that we all have a temperate, healthy and prosperous spring!

Chloe G K Atkins

My apologies for not blogging in ages. . .all sorts of encumbrances occurred in the intervening period between my last post and this one. . .

Well, our CIHR funded research project on MUPS – medically unexplained physical symptoms — is winding up.  And, it has been a fascinating two years.  Overall, it has been an indelibly positive experience.   Our interdisciplinary team worked (and continues to work) very well together.  I’ve seldom encountered such hard-working, thoughtful, engaged and kind people.   Everyone brings  100% of effort to all aspects of the study; each person is perennially willing and happy to help another team member out.

As such, we all hope to be able to work together again.   Our intention is to expand our efforts in the future — perhaps to include pediatric patients and physicians and/or, to expand our participant cohort to include other clinical disciplines such as nursing, physical therapy, respiratory therapy, etc..

In terms of translating what we’ve found into action . . . we’d like to establish a clinic(s) which would address the needs of MUPS patients and provide support for the concerns of clinicians who look after them. We are also making efforts to influence undergraduate and clinical education so that they more consciously include uncertainty as a medical possibility.  For example, teaching case studies, seldom if ever, include narratives in which there is no diagnostic answer.  This needs to change.  In addition, we intend to make better and broader contact with the public and with consumers of health care, both about the limits of medical diagnostic models and capacities and, about what patients should nonetheless expect in terms of receiving respectful and competent care from physicians.

Finally, writing and publishing our analysis from the experiential data we gathered is imperative.  We recently published an article: “Silos of Silence, Stress and Suffering: Patient and Physician Experiences of MUPS and Diagnostic Uncertainty.” AJOB Neuroscience, 4(3):3-8, 2013.  We will be seeking publication for another 3-5 papers this coming winter.  These will discuss “best practices” for physicians; coalesce the experiential wisdom of the various participants in the study and draw socio-medical lessons from them; address medical education reforms; highlight communication models and practices in the MUPS clinical encounter and; for the more philosophically minded amongst us, critically assess the ontological challenge that MUPS poses to both patients and physicians.

Again, the work has been demanding  but incredibly fruitful and satisfying. Moreover, we seem to be part of a nascent awareness that not all symptoms are fathomable and that MUPS patients and their physicians need not suffer the stress of an unknown illness in isolation.

Best wishes,

Chloe

A quick update on our CIHR study on MUPS- medically unexplained physical symptoms:

We presented a poster of our preliminary findings at the BrainMatters3 Conference in Cleveland Ohio, 25-27 October 2012.  The meeting was an interdisciplinary array of neuro-scientists, ethicists, neurologists, psychiatrists, writers, social workers, etc..  Consequently the presentations were diverse and far-reaching.  A number of them will be posted on UTube in the coming months: http://www.youtube.com/user/ClevelandClinicCME.  Once they are online, I will highlight the sessions which I found to be the most interesting.

Out of this conference, we were fortunate to be asked to submit an article to the American Journal of Bioethics which will be published during the summer of 2013.  I look forward to reading the 5 other essays which have been submitted from other BrainMatters participants.  (Written prose can often hone arguments for the reader that remain elusive after a day of ongoing oral presentations.  Moreover, articles also present details of the author(s)’ discussions more subtlely and articulately.

Having written our short (3,000 word) piece outlining our preliminary investigations and anlayses, we’ve returned to transcribing interviews from our research project here in Calgary and Vancouver (Canada).  We will finalize our interviews by January 2013.

As for me personally, I am undergoing a flare of my own MUPS condition.  (The closest diagnosis that we can arrive at is that I seem to have an atypical form of myasthenia gravis.)  I am not enjoying the severity or timing of this exacerbation.  There are two positive observations that I can make: i) I am receiving excellent care from a multidisciplinary team in Calgary  and, ii)  the symptoms seem to be gradually abating. . .

McCaig Tower, FMC, University of Calgary, Calgary, Alberta.

When Young Children Ask about 9/11:

It is the anniversary of 9/11 — an event that resonated with me ages– as it did for everyone else in the world.  (I do not think it will ever fully recede from my awareness.)  For years afterward, it was almost as if my consciousness hung suspended waiting for the next, dire, unimaginably horrible thing to happen . . . . and then gradually, even as the events unfolded in unforeseen ways — the US marching to war in Iraq, and then in Afghanistan . .  . and Canada going to war also in Afghanistan — the next gruesome, unknown thing did NOT happen.  And so life my continued on and I stopped, ever so gradually and imperceptibly, holding my metaphorical breath.  Our family grew, my career advanced, more students were taught, more words were written and read. . . .

And now, when my young sons ask about that day, all I can say is that it  was  remarkable; a day I will never forget.  I try to capture the stony presence it has in my heart by telling them that it rocked me and others fundamentally and, that it likely changed history in a manner that I cannot conceive.

They have reached an age, where the macabre simultaneously draws and repels them.  Curious, they want to know more, turning their gaze toward the firey scene on the TV when the remote pauses momentarily on a commemorative broadcast before we sweep past onto something more prosaic.   One of them cries out “No, no,” just as the other pleads, “But I wanted to watch. . . ”  Despotically clicking the remote, I tell them that when they are older, I will let them watch the film footage and documentaries from that day.  More silently, I wonder when I should reveal this aspect of our history and ourselves to them.  At what point, I ponder, should they become versed in the cruelties and sufferings that is a part of  our nature — and that this day so astonishingly revealed to us?

I still remain unsure of the meaning of the simple and horrific violence that occurred on 11 September 2001.  And I cannot begin to adequately explain, to an unfolding and still unknowing generation, the source of the fire and killings and, of the origins of human hatred.  And yet I understand that such enmity burns within all of us, just as surely as love does, and that we must guard against the former and tenderly stoke the timid flames of the latter.