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

Top 4 Reasons to Return to Tufts

by Pamela Katz Ressler, RN, BSN, HN-BC, MS-PREP candidate, PREP-AIRED moderator and administrator, Tufts University School of Medicine

The Pain Research, Education and Policy Program(PREP) is the first and only multidisciplinary university-based pain curriculum program in the nation.  There are numerous reasons to become part of the PREP program: small class sizes, diverse student backgrounds, and expert faculty are a few of the unique qualities of the program.  What also sets the PREP program apart is the continued connection with PREP alumni, who are are welcomed and encouraged to remain an integral part of the PREP program.  

Here are 4 top reasons for PREP Alumni to return to Tufts:

#4 Meet world renowned speakers and authors:

Please join us to hear two prominent pain experts lecturing in April.  Melanie Thernstrom will be speaking about her acclaimed book, The Pain Chronicles on April 12, 2011 at 4pm in the Wolff Auditorium at Tufts Medical Center. 

Dr. Rollin (Mac) Gallagher of the University of Pennsylvania and the VA Administration will describe recent efforts to alleviate pain and suffering beginning in the battlefield and extending through rehabilitation.  He will be speaking in the Wolff Auditorium at Tufts Medical Center at 4pm.  The date of his lecture is April 21, 2011.

#3 Network with New Alumni 

Come and hear our graduating MS student capstone presentations on Monday, May 2 from 3:30pm to 5:00pm in Conference Room 1, M&V Building.   We would love your support and networking with our hard-working graduates. 

#2 Enroll in a Tufts course and save 75% 

Did you know that all alumni from the Public Health and Professional Degree programs are able to enroll in a maximum of three courses in PHPD (one per year) at a 75% savings???  Yes, you can take that elective that you always wanted to and spend only 25% on that course!  Contact Lauren Budd, Assistant Registrar at lauren.budd@tufts.edu  for more information.

#1 Expand your world by connecting with PREP’s social media sites

In addition to PREP-AIRED, the PREP program’s widely read blog, the PREP program now has its own Facebook page.  Join the community of current students, policy makers, leaders in the pain conversation and alumni by “liking” our page.  Here is the link: http://www.facebook.com/#!/pages/PREP-Pain-Research-Education-and-Policy-Graduate-Program-Tufts/198047410219415

What are your top reasons for returning to Tufts?

Add comment April 6th, 2011

Social Media — How Can We Best Use It?

By Marcin Chwistek, MD, Attending Physician, Pain and Palliative Care Program,
Supportive Oncology Care, Fox Chase Cancer Center, Philadelphia, PA

I joined Twitter around the last elections, fascinated by social media’s power in inducing a societal change. The optimism and the real sense that we can change things for better were palpable. I had not felt anything of that magnitude since I witnessed, as a college student, the first democratic election in my native Poland in the early 1980’s. I stuck with Twitter since then, and have been primarily using it to tweet about issues related to cancer pain and palliative medicine. Over time, my community on Twitter has evolved into a fascinating mix of people: patients, medical librarians, consultants, physicians, head hunters, nurses, community organizers, news organizations, social workers and cancer advocates to name a few. And although many of them are interested in issues concerning pain management and cancer care in general, it would be incredibly naïve to think we all have common goal or even agree on things. Our backgrounds, life experiences, geography could not be more diverse. And yet, I have a sense that as a group we have a new responsibility. Clay Shirky, who has been writing about social media for a while, said this during his recent TED talk: “Old Media: professionals broadcasting messages to amateurs are increasingly slipping away. In a world where former audience are now increasingly full participants, it is less and less about crafting a single message to be consumed by individuals, it is more about environment for convening and supporting groups…. How can we best use it? “
Traditionally, it was the pain physicians or researchers broadcasting to the community of pain patients. They might have written books on the subject, speak at a conference or for a TV program. Now it is pain patients (and again there is this amazing variety within the group – cancer pain, fibromyalgia pain, back pain etc), pain advocates, pain physicians, pain educators, pain researches organizing their own groups on Twitter, MySpace or Facebook. The groups may function as a support group, as a place to exchange ideas or perhaps as a resource. The Internet makes those goals incredibly easy. Without however committing the groups to bigger goals, more ambitious goals, goals that would affect lives of many people I am afraid we are not using the power we were given. Pema Chodron in her new book,”Taking the Leap”, writes, about “three basic qualities that have always been with us but perhaps have gotten buried and been almost forgotten” … natural intelligence, natural warmth, natural openness. I would argue that these qualities apply to groups too. There is a natural intelligence that is bigger than the sum of our individual minds, natural intelligence of the groups or “the wisdom of crowds” as James Surowiecki names it. We need to engage it as it would point naturally to what needs to be done. Natural warmth is our empathy. But hearing the stories, which being a part of online community enables, our empathy increases and we all are moved to action. Empathy is a seed of compassion, and compassion is an urge to act on behalf of those who suffer. We can choose to be moved by the stories we hear and act on them. Empathy has the power to focus our attention on issues we may have otherwise not known about. And finally, there is natural openness that Pema Chodron describes as the spaciousness of our sky-like minds. It is a beautiful metaphor, and when I think about social media, this metaphor seems to be even more powerful – Individuals working in their own seemingly separate environments, but connected on the net. It is literally “minds connecting in the sky”. Pema contrasts this attitude of openness with a fear based view “where everyone is either an enemy or a friend, a threat or an ally, someone to like, dislike or ignore.” And as anyone who has experienced it first hand, as a patient or a clinician knows, medicine is riddled with fear. There is fear of misdiagnosing the disease, fear of not being good enough, fear of not being in control, fear of being in pan, fear of not regaining ones health, fear of relationship etc. Fear seems to be in a way of most of what we do. As Parker Palmer says in one of his essays:”Fear is not just an emotion, but a central feature of the culture that surrounds us”. Being in a group, feeling a strong sense of community united to improve wellbeing of others, could be one of the best antidotes to fear. And it comes to generating a change in how medicine is practiced today; it may turn out to be our biggest asset.

4 comments September 2nd, 2009

Attending Local Conferences and Seminars: Financial Help for Students is Available

by Lisa Neal Gualtieri, PhD, Adjunct Clinical Professor, Tufts University School of Medicine and Pamela Ressler, RN, BSN, HN-BC, MS-PREP student and PREP-AIRED blog moderator
We went to the Massachusetts Technology Leadership Council meeting in June on Healthcare & Social Media: Don’t Do It Alone – How to Leverage Social Media to Power Behavior Change . It was a fascinating session that included an excellent presentation by Dan Pallestant, MD, founder and CEO of Sermo, the best known physician online community. But the point here is not the seminar itself, but that there any many conferences and seminars in Boston on healthcare and attending them takes a committment of both time and money. The time issue comes down to a determination of how beneficial the content or the networking will be. The cost issue is one where there is help. Stay In MA is designed to support students’ attending local conferences and seminars and the application process has a quick turnaround. We recommend you try it the next time you see an announcement.

Add comment July 19th, 2009


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