Blogs as a ‘service’ not a ‘treatment’

On the virtually connecting session yesterday we talked about the role blogging might play in healthcare. One question that Susan Adam’s (@edtechsight) asks us was how to educate patients about blogs (or inspire them to participate in the blogosphere)? She mentioned seeing something like a pamphlet or patient handout that talked about the role of blogs in healthcare – sort of like the various handouts on support groups relating to various illnesses or public service announcements.

It occurred to me while reading an article about the “lack of scientific knowledge of illness blog practices and their utility during illness within the healthcare disciplines” (Heilferty, 2009, p. 1546), that the problem is the need to see the utility of blogging as a “treatment” rather than a “service”. I rant a bit about the issue with “scientific knowledge” being applied to narrative practice in a blog post on my other blog. My point here is that I see blogging and the use of blogs as a ‘service’ that might be offered to patients, rather than treatment. Blogs are not a ‘cure’ for some form of aliment – although they do have some curative powers in the mental health space – a part of their value is the service they provide to help healthcare providers, caregivers, and other patients better understand the nuances of the illness experience. One example I like to give is relating to chemotherapy. Websites will tell you about side effects. They might even give you a few tips on managing those side effects. But they won’t give the plethora of real tips that come from reading real experiences. Things like having a separate towel to dry your head after a shower while your hair is falling out.

I also don’t necessarily think all patient need to read blogs. After my diagnosis, I wasn’t able to read blogs. It was probably three months before I started reading them. However, my husband did read blogs. Caregivers need to have a sense of what you are going through too. Blogs really help caregivers better understand what it means to go through the illness, on a much more thorough level than what any healthcare provider or website can articulate. My husband used blogs to help understand what I might be going through – but also get practical tips for how he might better support me throughout my treatment. When I was ready, he pointed me to a few great blogs, which got me started reading other blogs and then connecting to the blogosphere.

But getting back the service. The role I see of blogs in healthcare in the short-term future is the same as fitness classes and chair massages. These are services that are provided by our healthcare centers (e.g. Stanford Supportive Care program provides a variety of educational sessions as well as yoga classes, gym classes, and chair massage in the waiting rooms). I see a session on the role of blogs in digital health literacy as an important service that healthcare organizations can provided for their patients. I don’t see it as a treatment provided by a doctor or nurse – at least not yet. I do hope for the day when we have a good health blog search engine (researchers are working on it) where patient could use blogs to easily find meaningful health information. I don’t know that it will ever happen. For now, I think we need to do more to teach patients what types of information is appropriate in health blogs, and where to find a few good ones (to get them started).

Reference:

Heilferty, C. M. (2009). Toward a theory of online communication in illness: concept analysis of illness blogs. J Adv Nurs, 65(7), 1539-1547. doi:10.1111/j.1365-2648.2009.04996.x

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3 Comments

  • Thanks Becky, will have a look at Heilferty article. My take on blogs situates them outside of medical care (as I know it). To me, the blog is at least partly an attempt to add continuity to my life totally interrupted by illness. For me, the medical system is devoid of the affirmation I need to get through illness. The system denies and devalues me. For its own needs it requires the weak, the confused, the helpless and the compliant.

    To be fair, much of this has to be the male part of me that rejects authority and is super sensitive to phoniness. (This maleness may actually be a clue to why I feel very comfortable around women and will remain calm around female doctors–even though they have done me equal damage–while all but one male doctor I’ve had should stay away from me).

    That said, for Susan’s design work she might want to look into Aaron Antonovsky’s “Unraveling the Mystery of Health: How People manage Stress and Stay Well.” Usually available from ABE Books online. He talks about the Sense of Coherence (SOC) that people lose in in illness and blogging is a way for someone to write themselves back into living and out of the role of patient. To take control back, reestablish a sense of continuity independent of caregivers that wish only to supervise your life.

    I’ll leave a quote from the book at the FB site.
    This is interesting. Personality Psychology:
    “The role of narrative in personality psychology today”
    Dan P. Mc Adams Northwestern University
    https://www.sesp.northwestern.edu/docs/publications/1049432884490a09930cdc3.pdf

    Thanks for the VC opportunity.
    Scott

  • Love the notion of seeing blogs as a service. I have found it so helpful just to know I’m not alone out there, feeling all the random things I feel. A lot of us provide details about collateral damage, side effects, and other vicissitudes of treatment that are of tremendous practical help to others going through the same thing, especially when their doctors haven’t warned them about such possibilities. I’m a physical therapist who often treats cancer patients, so I have also sometimes provided exercise advice for dealing with pain & stiffness after cancer treatment. Then there is also the potential to develop genuine friendships across the blogosphere. I’ve communicated in so many ways — phone, texting, Skype — with some of my online friends, and have managed to meet some of them in person, a huge delight.

    Thank you, Becky.

    Kathi

    • Thanks Kathi. I love the direction that my research is taking me … looking at the ways blogs help develop digital health literacies … and thank you for blogging. I enjoy reading it 🙂

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