alaina cyr

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”