Communicating the Experience of Chronic Pain and Illness through Blogging

When one thinks of chronic or persistent pain one often thinks in terms of the biologic pathways of pain perception.  However, an important component of pain involves of the psychosocial aspects of coping with a chronic illness.  Disciplines across the health professions, including medicine, nursing, psychology, social work, and sociology, are actively engaged  in understanding the psychosocial and emotional consequences of chronic pain and illness: Yet few studies have addressed the  use of web-based tools, such as blogs, in the patient experience of living with chronic pain or illness.

Four Tufts University School of Medicine faculty members, Pamela Katz Ressler (Pain Research, Education and Policy Program), Libby Bradshaw (Pain Research, Education and Policy Program), Lisa Gualtieri (Health Communications Program), and Kenneth Chui (Public Health and Community Medicine) from the Tufts University School of Medicine in the Department of Public Health and Community Medicine recently published the results from a  formative research study,  Communicating the Experience of Chronic Pain and Illness through Blogging, in the Journal of Medical Internet Research.

The goal of this research was to explore the use of patient illness blogs as a means of communicating the experience of chronic pain  and illness and to articulate the unique set of benefits and barriers of blogging.  Qualitative data from 230 current illness bloggers were collected and analyzed to better understand the self-perceived psychosocial and health effects associated with the blogging activity. Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations. While the authors’ acknowledge the study limitations, they are hopeful that further research will be conducted to explore the observed associations between communicating the experience of chronic pain through blogging and patients’ coping and self-efficacy when living with chronic pain or illness.

To read the full paper, Ressler, PK; Bradshaw, YS; Gualtieri, L ; Chui, KKH: Communicating the Experience of Chronic Pain and Illness through Blogging,  in the Journal of Medical Internet Research, please click here.

 

Add comment December 11th, 2012

Pain as a Top-Down Phenomenon: a Bibliography

by Daniel B. Carr, MD, FABPM, FFPMANZCA (Hon.), Director, Pain Research, Education and Policy (PREP) Program, Tufts University School of Medicine

Since its inception in 1999, a single concept has unified PREP’s curriculum and connected its community. This theme is that the study of pain is best accomplished if it is seen as a top-down (i.e., population-based) public health phenomenon as noted in the 2011 IOM Report on Pain.  We are fortunate that PREP has always been situated within the Department of Public Health and Community Medicine and grateful that its Chairs and Deans — Harris Berman and Aviva Must — have shared this view and continually encouraged PREP’s growth.

Advances in pain research and education, particularly as informed by the emerging field of social neuroscience, have made PREP’s vision more and more timely.  Reflecting the broader pain community’s growing awareness of PREP’s distinctive voice, this year I’ve had the privilege of delivering keynote addresses at congresses of the American Pain Society, the Special Interest Group on Pain Education of the International Association for the Study of Pain, and the American Society of Pain Educators’ PAINWeek. The specifics of each talk differed somewhat but all conveyed PREP’s underlying theme.

In response to requests from attendees at these lectures, I have assembled an interim bibliography to allow anyone interested to become better informed about some of the sources that the PREP program draws upon. Reflecting PREP’s interprofessional, eclectic outlook, many are from the humanities and social sciences, complemented by the biomedical literature.  For example, according to the narrator in the novel by Greer, “I do not know what joins the parts of an atom, but it seems what binds one human to another is pain”.

Those who wish to immerse themselves in our curriculum will enroll in a course or one of our certificate or degree programs. Click here to find out more about taking a course.  Following the great success this summer of PREP 233 (End of Life and Palliative Care, directed by Pam Ressler) in a blended onsite-online format, our foundational course PREP 230 is the next of our courses to be offered in this format.  This fall, PREP 230 will begin on September 28.  To reflect exciting advances in the field of pain, we have changed this course’s title from “Neuroanatomy, Neurophysiology and Neuropharmacology of Pain” to “Neuroscience of Pain: from Society to Synapse”.  Click here to learn more about this course.  As in earlier years it will be directed by Steve Scrivani, who has consistently earned high praise for his meticulous running of this course. Besides his own lectures, over the years Steve has assembled a core group of dedicated, expert faculty to provide students with an unparalleled learning experience.

Click here to access bibliography.

Add comment September 5th, 2012

Pain Education is a Public Health Imperative: Reflections on Pain Awareness Month and the Institute of Medicine Pain Report

by Daniel B. Carr, MD, FABPM, FFPMANZCA (Hon.), Co-Founder and Director of the Pain Research, Education and Policy Program (PREP) at the Tufts University School of Medicine

Each year, September is “Pain Awareness Month” – a time of intense activity for PREP faculty and the entire pain community  It is also when PREP’s academic year begins.  One key insight connects diverse Pain Awareness activities and PREP’s own vision and mission: PAIN IS A PUBLIC HEALTH ISSUE, AND PAIN EDUCATION IS A PUBLIC HEALTH IMPERATIVE.  Now is a perfect time to step back and place some context around this idea at the heart of not only PREP’s curriculum, but also our entire approach to interprofessional education.

The report issued by the Institute of Medicine earlier this summer – “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research” (ref 1) — is the latest in a series of white papers on pain by governmental and professional groups dating back well over two decades.  These include the first US federal clinical practice guideline (ref 2) on any topic,  numerous international guidelines (ref 3), and white papers from authoritative sources such as the Mayday Fund (ref 4), the American Academy of Pain Medicine (ref 5), and even the World Health Organization (ref 6). Together, they present steadily accumulating evidence that acute, chronic and cancer-related pain are widely prevalent and exact a major economic and human burden in developed nations and even more so in resource-poor countries. Other common themes include lost opportunities for early intervention to control or prevent the transition from acute to chronic pain, the negative outcomes of undertreated pain, the importance of optimal pain control for patient-centered care, disparities in pain assessment and treatment experienced by minorities and other under-represented groups such as women or those at the extremes of age, and the need “to adopt a population-level prevention and management strategy” (ref 1) for pain.  Related to all these is the growing perspective that pain control is a fundamental human right (ref 7) as articulated by Human Rights Watch (ref 8  ) and recently affirmed in the 2010 Declaration of Montreal by delegates to the International Pain Summit (ref 9).

Since its inception in 1999, the Tufts program on pain research, education and policy has been housed in its Department of Public Health and Community Medicine. Although the pain community has long held a consensus that pain is a biopsychosocial phenomenon, most prestigious journal articles and a majority of research funding have emphasized the “bio” end of that word. Thus, the classical Loeser model of pain originates in subcellular nociceptive machinery, then broadens to encompass the experiences of pain and suffering, followed by pain behavior.  The Loeser model is an intrinsically individual one.

(Fig 1. Loeser Model used with permission of Professor John Loeser)

Our program’s framing of pain employs a sociobiological perspective, in keeping with our having been co-founded by a PhD sociologist, Kathy Lasch. Those individuals better able to detect and remember threats to their survival have better odds of propagating their DNA within the collective gene pool. Indeed, within Darwin’s (and more recently, Dawkins’s) “selfish gene” framework, individuals are mere vessels through which genes propagate themselves (ref 10). Whether or not we agree with this view, it sets the stage for interesting discussion by shifting our reference frame to a distinctly supraindividual model of pain. According to PREP’s social model, the experience of pain is still at the core, but to understand it requires research that goes beyond the individual. In human society, research is lost if not translated into education – particularly one that embraces the intersubjective, social and emotional nature of the pain experience. We at PREP are committed to interprofessional education of pain leaders as the most effective way to effect social change – a commitment that led to our program’s specific acknowledgment in the IOM report in its chapter 4, on education.  Among recent PREP graduates and applicants we are beginning to see a few exceptional persons who have chosen to spend their careers as policymakers in the important field of pain. I am delighted to see this, because the continuous translation of the benefits of research and education requires ongoing support through enlightened, population-based health policies.

Fig 2.  PREP model

References

1: Institute of Medicine Report (2011)  http://books.nap.edu/openbook.php?record_id=13172

2: AHCPR clinical practice guideline: acute pain (1992) http://www.ncbi.nlm.nih.gov/books/NBK16501/

3: Carr, DB .”The Development of National Guidelines for Pain Control: Synopsis and Commentary”, European Journal of Pain (2001), 5 (Suppl. A) p. 91-98.

4: “A Call to Revolutionize Chronic Pain Care in America: An Opportunity in Health Care Reform”, Mayday Fund (2009)  http://www.maydaypainreport.org/docs/A%20Call%20to%20Revolutionize%20Chronic%20Pain%20Care%20in%20America%2003.04.10.pdf

5: Dubois, MY, Gallagher, RM, Lippe, PM. “Pain Medicine Position Paper”, Pain Medicine, vol. 10, issue 6, p. 972-1000, Sept 2009. http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4637.2009.00696.x/full

6: World Health Organization press release (Oct 11, 2004)  http://www.who.int/mediacentre/news/releases/2004/pr70/en/index.html

7: Brennan, F, Carr, DB, Cousins, M. “Pain Management: A Fundamental Human Right”, Anesthesia & Analgesia, vol. 105, no. 1, p. 205-221, July 2007.    http://www.anesthesia-analgesia.org/content/105/1/205.full.pdf+html

8: Human Rights Watch 2009 report   http://www.hrw.org/reports/2009/03/02/please-do-not-make-us-suffer-any-more-0

9: Declaration of Montreal 2010 from International Pain Summit http://www.iasp-pain.org/Content/NavigationMenu/Advocacy/DeclarationofMontr233al/default.htm

10: Carr, DB; “What Does Pain Hurt?”, IASP — Pain Clinical Updates, vol. XVIII, issue 3, p. 1-6, July 2009  http://www.iasp-pain.org/AM/AMTemplate.cfm?Section=HOME&TEMPLATE=/CM/ContentDisplay.cfm&SECTION=HOME&CONTENTID=9599

Add comment September 1st, 2011


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