So, what DOES all this tweeting really mean? Results from ethnographic work on Twitter use and advanced cancer

If you missed the news, yesterday I successfully defended my thesis.

I owe thanks to a million different people, but I specifically want to acknowledge four people who made this project what it has become. First and foremost, Alicia Merchant who’s Twitter use inspired my whole thesis. I hope this research honours your legacy. Colleen Young,  Michelle Hamilton-Page, and Fiona Webster: I am so grateful for your mentorship and advice. I feel so proud of this work and it is in no small part because of what I’ve learned from you.

In the next few weeks I’ll be working on a manuscript (or two or three) to formally publish my work. In the meantime, below is a plain language overview of my thesis and some of what I found. You can also read a 2-page summary of my research. [PDF, opens in new window], or delve into all 168 pages of my full thesis manuscript [PDF, opens in new window].

“I’m still here”: an Ethnographic Exploration of Public Twitter Use among People Living with Advanced Cancer

A brief summary

Research question: Why do people living with advanced cancer use Twitter publicly?

To answer this question, I looked at public tweets shared by people living with advanced cancer to understand how they used Twitter, and I interviewed people living with advanced cancer to find out what they thought about their public Twitter use.

Why this is important: Most of the research I’ve read on health-related Twitter use has focused on how Twitter helps patients find peer support and health information. But when you can find both these things through more private and more reliable means (such as through peer support groups, from your medical team, from health librarians, etc.), I didn’t think these goals alone were enough to explain Twitter use. So what else brings patients to use Twitter?

Findings: After interviewing 10 participants and studying more than 9,000 tweets from 8 Twitter users, I came up with 6 themes that helped me to better understand how and why people with advanced cancer use Twitter.

  1. Constructing Identity through ‘Textual Selfie’: Tweeting was sometimes used to make sense of thoughts or feelings by creating  ‘textual selfies’ (informal snapshots of a moment in time) which helped them understand themselves better. Twitter felt like a place where it was OK to share as many or few tweets as one wanted, whenever the mood struck, and even if thoughts were only partially formed.
  2. Resisting Social Death: In sociology, ‘social death’ is a term used to describe when  someone is not able to participate fully in ‘normal’ life (for example, because someone is sick and unable to do regular daily activities). Twitter helped people with advanced cancer stay connected to regular life because they could decide when to focus on their cancer or when to share other parts of their lives, like their hobbies, interests, and skills. Twitter also was an easy way to connect to ‘regular’ life, especially when cancer treatments or side effects prevented them from living a regular life.
  3. Accounting for Time: Twitter use made people with advanced cancer very aware of time and prompted them to be more mindful of how they spent it. Their feelings about time seemed to correspond to how they felt about their Twitter use, for example, people who were anxious about having limited time felt Twitter could be a waste of time, while others who were grateful for each day used Twitter to celebrate the time they had left. But no matter how they felt about the passing of time, Twitter was a way for them to look back at the past.
  4. Finding Freedom in Obscurity: Because tweets felt less visible than other social media posts (like Facebook), people with advanced cancer felt they could be more authentic on Twitter than in other social spaces. When they felt that other people weren’t paying very close attention to their tweets, they felt like they could be more free with their ideas. But when they felt others were paying more attention (for example, because they became more famous or because people close to them started following them), they were more careful about what they posted and sometimes censored themselves.
  5. Creating a Living Legacy: Public use of Twitter was often seen as a way to show the world what it is really like to live with advanced cancer with the intention of helping out other people, including strangers. This could mean openly sharing their knowledge about cancer, providing comfort to other patients, or being a positivity role model for other patients and their loved ones.
  6. Fighting for What’s Right: Anti-social tactics were sometimes used on Twitter as a way to correct ‘bad’ information about cancer and its experience. Spamming was used in an effort to increase the visibility of advocacy messages. Calling out was used to draw unwanted attention to users with problematic behaviours as a means of publicly shaming them until they change their ways. Trolling was used to disrupt conversations (such as tweet chats or popular hashtag memes) to make sure readers are getting the ‘right’ information about cancer.

What do these Findings mean: Most of the research on Twitter use among patients has focused on what people tweet about without looking at why they tweet. When focusing on people with advanced cancer, tweeting can be a way to say: “I’m still here”. I came to this thought after seeing a Twitter users tweet a version of this statement several times within a few months.

The phrase “I’m still here” can be interpreted to mean a few different things:

  • “I’m still here”, as in letting other people know you are still present when they can’t see you otherwise. As a general example, this can be done when using text-based technology to talk with other people.
  • It can be a way of re-stating that you are still a person with the same hobbies, interests, and values as you had before your cancer diagnosis.
  • It can also be a way of bringing hope to other cancer patients, as in “I am still living despite the diagnosis I was given. Don’t let the statistics or prognosis dictate your life”
  • It can also inspire those without cancer, as in “I am still living my best life, even when facing this awful diagnosis. If I can face cancer, you can get through whatever you’re facing too”

It’s official! I finished grad school!

Today I am officially done grad school. After my defense my thesis was accepted as is – a rare honour for my program – and all i have left to do is submit the paperwork and then graduate in November! It’s been a looooong process, but I am so proud of the work I did. I’ll tell you all more about it in the upcoming days, but today I am basking in the glory of reaching the finish line.

making sense of writing books and agreeing to be studied

I’ve got into the homestretch of my masters thesis research, studying Twitter use among people living with advanced, metastatic, chronic, terminal, or incurable cancer. There are still some analyses left to do, but I’ve started to write (and write, and write, and write some more) as a way to begin making sense of it all. I suppose this blog post fits within this sense-making activity too.

I loved speaking to and getting to know a small piece of those people who were gracious enough to let me interview them for this study. As the drudgery of going through data again and again and again starts to wear me down,  I find myself thinking back on some of those interviewees, mentally re-listening to the words they said and the emotions that came through as they spoke. I have a particularly soft spot for their laughter, and it gives me a wistful feeling thinking about deleting those audio files when this project’s finished.

I also find myself wondering what they’re up to now. It’s been a year or two since I spoke to most of them, so I can’t help but be curious about what’s changed in their lives since. In many cases I didn’t know their Twitter handle, but there were a few I ended up remembering for one reason or another. And so a few weeks ago I found myself looking up one of those people: Robin*.

When I spoke to Robin, they were in the midst of writing a book. This is not an uncommon thing for people living with cancer to want to do, as I quickly learned when I started working at Princess Margaret in 2010. Within weeks of starting the job I was introduced to several patients who had been writing and self-publishing their own memoirs, and have heard of many more doing the same since. For Robin, writing a book was something they’d always been interested in doing and since getting their terminal cancer diagnosis, it was a bucket-list item they decided to work on.

Anyway, so a few weeks ago I found myself wondering if Robin ever finished the book. I looked them up on Twitter to see what’d been happening since we spoke, and… well, Robin had died a few months after the interview. Logically-speaking, I recognize that this was a very real possibility. When we spoke, Robin told me they had already lived 4 times longer than the doctors expected when they were first diagnosed. Medically-speaking, Robin was not going to outlive this cancer diagnosis. Robin knew this, Robin’s doctors knew this, I knew this. And yet emotionally-speaking, I was not prepared to see this happen.

One of my first thoughts was that I’d hoped Robin was able to finish writing their book before they died, but I quickly realized maybe I was looking at things all wrong. I don’t believe Robin’s point was to ever “finish” the book, but rather it would forever be something that Robin worked on for as long as they could. The book would only be “finished” when Robin died (it’s worth saying here that I do not know if that’s how Robin felt, this is me sorting out thoughts).

But interesting still that the goal would be a book rather than a blog – something Robin also did, along with using other social media to talk about their disease. I don’t know if the book was ever (or ever will be) published, but having that goal in mind – to produce a tangible object that could last for decades, that has a sense of permanence – makes me wonder: Was the point to leave something behind, to leave (at least a piece) of Robin’s life story behind so they could leave a lasting mark?

Was that also the point of writing publicly on Twitter?

Was that also the point of participating in my interview? To leave a mark on me and anyone else who would read my research?

I’ll never be able to know.

 

 

* not their real name

Why do you tweet about your health? [research study]

I am looking to interview people living with advanced, metastatic, stage IV or chronic cancer who use Twitter to talk, listen, learn, and/or share updates about their health. Please share a link to this post on your Twitter, Facebook, or blog accounts.

Purpose

Under the supervision of Dr. David Wiljer, this study aims to explore Twitter use among people living with metastatic, advanced, and chronic cancers, and what that means in the lives of those living with a diagnosis.

This study is being conducted by Alaina Cyr to complete a thesis as part of the requirements for earning a master’s degree in Health Services Research at the Institute for Health Policy, Management, & Evaluation at the University of Toronto.

Update: Data collection has ended for this project and I am now finishing my analysis. Please contact me at alaina.cyr@mail.utoronto.ca if you are interested in learning more about this study or if you’d like to be contacted when the final analysis is complete.

 

This research study was reviewed and approved by the Research Ethics Board at the University of Toronto.

To prevent disclosure of personal information, please note that comments must be approved before they appear below.