BC Becky

Never thought I'd want to be a breast cancer survivor

Category: Research

  • Cancer blogging: A survivor’s story

    Cancer blogging: A survivor’s story

    This post is a repost from my academic blog: rjh.goingeast.ca

    Yesterday, I presented at the AIS 2016 Annual Conference. It was the first time I have presented using an autoethnography of a blog – so it was more of a performance of a blog than a paper presentation. Doing the presentation really helped me think about how I want to present the blog chapters in my dissertation. The presentation takes advantage of the feature images to help add a level of depth to the text that is being read. It does feel kind of weird reading aloud a genre that is really meant to be read silently, rather than presented. That being said, I really felt like it could be a screenplay – I also think it would be really cool if I had other people read the blog comments – rather than me reading both. Displaying the feature images on the big screen has an impact on the story being told. I find that I want to show the pictures of the people leaving comments with their names, to help emphasize that there are real people behind the blog comments. That it isn’t fiction.

    One of the challenges with this type of writing is that it never seems done. I feel like I constantly need to make tweaks to the text. In this case, you can tell that I was running out of steam towards the end of the presentation. I ran out of time for additional edits. I don’t feel like this work is done, rather it is a working draft. I welcome feedback and comments on how I might improve it.

    As I do the rewriting of the text, I remind myself of the words of Art Bochner in Evocative Autoethnography – “Show don’t tell”. With that, I am trying to rewrite the interactions with people as dialogue. I am keeping my internal thoughts as tell text, as I am telling what is running through my mind. But I’m changing all of the telling that involves interactions with others into dialogue – which makes it more appealing to read and increases the impact of the story. I’m also working on the filtering out of parts that are not relevant to the story. Some of the tangential thoughts are important, but others are just extra.

    One of the challenges that I’m facing is dealing with my mis-understandings and incorrect information in the blog. There were times when I wrote things that I thought were correct at the time, but two years later I understand a lot more about the disease. I struggle with whether or not I should keep the incorrect information in the re-publication – in part because it was what I believed to be true at the time I wrote it. I welcome suggestions on how this could be handled? Perhaps I need to write it as I thought it at the time, but footnote it so that I it is clear that what I wrote is not technically correct? What do you think?

    I also have a chapter that I’ve written that I’m not quite willing to read aloud. I’m willing to publish it as text, but I am overly challenged by the idea of describing details of my breast self-examinations in a read-aloud format. I actually feel kind of awkward sharing it with my committee, but I know that it adds depth to the story. I also think it is an important thing to tell, as it can help others identify concerning symptoms sooner.

    You can download the presentation here: https://www.academia.edu/29536627/Cancer_Blogging-_A_Survivors_Story.pdf

    Robin DeRosa (@actualham) did such a great job tweeting my presentation that I just had to include here tweets here. Thanks Robin.

    https://twitter.com/actualham/status/792425889560727552

    https://twitter.com/actualham/status/792428086134509568

    https://twitter.com/actualham/status/792429900061929476

    https://twitter.com/actualham/status/792431371973226496

    https://twitter.com/actualham/status/792432038141947904

    https://twitter.com/actualham/status/792432384524357632

    https://twitter.com/actualham/status/792434098564435969

  • What if patients made the recommendations?

    What if patients made the recommendations?

    I was reading through Caroline’s post about What I wish I had known before treatment. She mentions an article about recommendations from breast surgeons regarding prophylactic mastectomy. There is concern that more patients are opting for them, even though there is no oncological benefit (article is here – if you want a copy and don’t have access, email me).

    I see lots of these recommendations – and misinterpretations of them. I found this article to be interesting because of its emphasis on individual patient decision making. It wasn’t pushing a particular recommendation, just saying that this is the evidence to help you and your patient come to a shared decision.

    I do wonder, however, what would happen if the recommendations came from patient’s rather than “evidence” that has not been humanized. I wonder if instead of giving patients the “facts” you gave patients a booklet or video of stories from different patients who opted for the different treatment options. You let other patients describe the impact of the different treatment decisions.

     

    A lot of the decisions that breast cancer patients need to make are emotional decisions. They are not necessarily logical decision. The choice between lumpectomy and mastectomy (when it is a choice) is individual, but patients aren’t adequately prepared to make that decision. They are presented with facts from a medical system perspective. For example, in the tools to help you make your decision you are told that if you have a lumpectomy, you will keep your breast however, you’ll need to be screened (e.g. mammogram or MRI) every 6 months. If you do a mastectomy there is no systematic screening. It is very much a medical system oriented description of things to help you make your decision. However, the decision isn’t strictly a medical decision – it is an emotional one. It is a quality of life decision. There are also a host of emotional and practical side effects that are never discussed. They are things that the medical system doesn’t care about, but the patient does.

    Age also matters in these decisions – and yet most of the evidence that is used for recommendations does not take this into account. A young survivor (I’ll use under 50 at diagnosis, although most use under 45) has very different longer term life circumstances when making their decisions – and yet that isn’t often taken into account when looking at statistics to provide recommendations.

    So I wonder, what if there was a resource that was a series of concise yet down to earth patient stories, told from a patient perspective? A retrospective analysis of patient experiences – provided in both storied text format and in video format. Something that really helps patients make decisions from a patient perspective, not a physician perspective. Something that deals with the emotional and longer term health impacts of the decision – not just from a medical system perspective but from a human who has to spend the rest of their lives living with the decisions they make.

    What do you think? Would this type of resource have helped you make a decision? Would surgeons be willing to provide this type of resource for patients? Would this be a useful discussion topic for Virtually Connecting ePatients?

    Feature image CC0 from Pixabay

  • Blogs as a ‘service’ not a ‘treatment’

    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

    Feature image CC0 by Pixabay

  • Talking about blogging with bloggers #vcept

    Talking about blogging with bloggers #vcept

    I’m excited that on Thursday I’ll get to meet a bunch of illness (health) bloggers that I have followed for some time (e.g. Marie Ennis O’Connor (https://journeyingbeyondbreastcancer.com/), Beth Gainer (http://bethgainer.com/), Caroline Frankovich Ronten (http://carolinemfr.blogspot.ca/), Britni Brown O’Donnell (https://bestliaryouknow.wordpress.com/), Alicia Staley (http://www.awesomecancersurvivor.com/), Terri Coutee (http://diepcjourney.com/), and Scott Johnston (https://scottx5.wordpress.com/) . I’ll be meeting them virtually, but synchronously using Google Hangouts on Air video chat. We’ll be talking about why we blog as part of a new project I’m working on with Virtually Connecting.

    If you are curious about why we chose to blog, you can watch the hangout from the Virtually Connecting YouTube channel embedded in the event announcement: http://virtuallyconnecting.org/announcements/making-the-private-public-why-we-chose-to-blog-a-vcept-discussion/

    I hope to be hosting more of these discussions over the next year or so, exploring the digital health literacies used by ePatients. If you have a topic you want us to talk about or you want to participant in a discussion, leave me a comment or note.

  • Usage guidelines for researchers who use blogs

    Usage guidelines for researchers who use blogs

    I’m thinking of calling out to the blogging community (more specifically to the cancer blogging community – but I’m sure this extends to other blogospheres), in trying to create some way to signify to researchers how the blogger wants their blog to be used in research. I’m thinking something similar to what creative-commons has done for the copyright community, I’d like to create something that is “informed consent” for the blogger community. Bloggers would then make the official statement in their About Me page. This would give researchers an indication for how the blogger wants their content used in research.

    Some of the statements might include:

    • When and how to reach the blogger (e.g. email, leave a comment, no need to contact)
    • What types of research I approve (e.g. all research, medical research, social media analysis, etc)
    • What uses of the blog are allowed (e.g. analysis use without prior permission, analysis only with prior permission)
    • What level of interaction does the blogger want with researcher (e.g. participatory research only, member checking required to ensure correct interpretation, no involvement in the research)
    • How should my blog be represented in the research reports (e.g. quote me directly, don’t quote me, anonymous contributions only)
    • What follow-up the blogger would like (e.g. contact me with research results)

    Those are a few things that immediately come to mind. I’m sure there are a bunch more. In the next week or so, I’ll look at how best to reach out to the larger blogging community to get their ideas on what this statement could say – then I can look at the best ways of categorizing things.

    Let me back and up start with the backstory on this. I’m looking at illness blogs in my research (more specifically the learning that occurs in breast cancer blogs). In doing so, I’m combing through the literature for anything written about illness blogs (or illness web logs, pathography, etc). As I read, I find myself a little frustrated that the far majority of researchers are both not bloggers and do not have critical illness. They are trying to be ethical in their methods, but they don’t have enough information to do so. They make assumptions based upon their field of study. What is ethical varies by field of study. For example, in social media analysis studies, anything on the public internet is fair game and does not require permission to use. So any blog that is not password protected, and any twitter chat is fair game for researchers. No approvals, no contact. In some circles it is common to use this public information logic as a reason to not need approval, but then remove names from quotes citing privacy. However, when I talk about researching blogs and ask if blogs represent “human subject research” I’m told yes, it-depends, or no depending on who I ask. If yes, then the bloggers in question need to give informed consent before their blogs can be used for research. I’m not sure happens if the blogger is dead (it happens when you research illness blogs). Then there is the issue of how best to contact the blogger. In some circles it is seen that if the blogger does not include an email address on their About page or in their footer, then they do not wish to be contacted. Anyone who blogs knows that the comments are how you typically reach a blogger – and especially if you are blogging about a health related issue and don’t wish to have your real name associated with your blog.

    My point is, the topic isn’t that straight forward. Researchers are well meaning, but they are making assumptions about what is ethical and what is moral based upon their specific fields of study. The voice of the blogger doesn’t play into the decision about how the blog is used in research. I want to change that. I want the blogger to be able to give official informed consent (or inform of their choices/preferences) directly in the About page of the blog. This will be especially useful in legacy blogs where the blogger has died and can no longer be contact to gain consent.

    Not exactly sure how to go about this, but I think it is something that is really important. I think that the blogger’s voice needs to be heard in the research space. I think that each individual blogger should have a say in how their blogs are used. I don’t think researchers should be deciding on what is ethical or moral, I think that is something the blogger should decide.

    What do you think? Do we need a blogger code for researchers? How would you go about making that happen?

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