The Shape of Illness
How do cancer patients and their families perceive the images posted in social media about their illness? Is the most "liked" content also the most relatable for patients? What's the psychological impact of the online cancer discourse? "The Shape of Illness" is a research and arts project to analyse the psychological perception of cancer-related images in social media. It is a living project meant to shed light on how we build the discourse of illness online and how it impacts people around us.
Over 40 million images mentioning cancer on Instagram shape the discourse of illness online. We have analysed a sample of it to learn what the most and least liked images look like, what elements impact the psychological perception of the images posted, and whether patients and their families identify with the content posted.
For the 112 images in the data set, participants were asked to rate 56 according to opposite pairs of emotions: sad vs happy, lonely vs accompanied, etc. The panel above reflect the photos that respondents reacted to with mostly positive feelings (or, to put it more clearly: the most positive images).
70% of the images surveyed inspired mostly positive feelings in the respondents. Among the most common positive feelings are those of pride, bravery, energy and strength.
Of the least "liked" images (those with fewer than 200 likes in the set), only 3 don't include a person in frame. The images show greater variance in the facial expression of the subject, with the least liked images featuring portraits of tired patients. Only two images in this group are perceived negatively by respondents, who otherwise mention feelings of calmness, strength and courage when looking at them. The colour blue makes a stronger appearance through the tints in the hospital rooms.
It is important to note here that the fact that some images had fewer likes at the time of collection is not indicative of their overall "success" in social media. Instagram does not allow for automatised scraping, so images had to be collected manually from the Explore page, which is updated regularly to show the newest, most liked photos. For popular hashtags, such as #breastcancer, that design of the Explore page means a steady stream of images every day. For cancer types with little traffic (such as pancreatic cancer), the Explore page showed images that had been online for months.
For the 112 images in the data set, participants were asked to rate 56 according to opposite pairs of emotions: sad vs happy, lonely vs accompanied, etc. The panel above reflect the photos that respondents reacted to with mostly positive feelings (or, to put it more clearly: the most positive images). 70% of the images surveyed inspired mostly positive feelings in the respondents. Among the most common positive feelings are those of pride, bravery, energy and strength.
Meanwhile, images that inspire negative feelings in respondents are mostly those picturing patients in bed, particularly if they are alone, and more so if the picture is a selfie showing medical equipment. This could mean that relatives of cancer patients remember their own experience, or it may be a reaction to the facial expression and apparent loneliness of the subject.
Similarly, memes and other images with text are seen to have a negative emotional effect, especially those that are meant to induce fear ("if you eat too many fried eggs, you'll get cancer").
While a significant number of images were marked with negative feelings (20%), all of them were accompanied with positive feelings as well. Often, an image marked as sad will also be marked as "brave" and "proud". Respondents feel sad about the situation pictured, but also express their admiration of the patients' courage.
WHAT'S IN AN IMAGE? ANALYSING SUBJECTS AND THEIR EMOTIONAL IMPACT
Of the 112 images surveyed, only 15 of them did not contain a person in frame. Portraits, selfies and group pictures dominate the image set, with certain similarities in colour and composition. Most of those without people are memes or informational posters.
The psychological perception of images with people vary based on their context and the expression of the person pictured, but also depending on the elements that surround them. Four variables stand out: the smile and the posture of the patient, whether they're in company, and external elements such as plush toys.
Where patients are pictured smiling, the likelihood of a positive perception is multiplied. Of the 30 portraits where the subject was smiling, only one was labelled as negative. The same dynamic is observed with body posture and grimace: 5 out 5 images analysed where the subject was grimacing were labelled as positive. Likewise, the perception of the image seems to improve when the subject is accompanied, inspiring feelings of calmness and pride. The role of balloons and plush toys is explained a little further down.
HOSPITALS AND MEDICAL EQUIPMENT
Images that feature hospitals or medical equipment are some of the most common in the data set. While many of the images taken in hospital were marked as having a negative impact, some of the most positively perceived photographs were also taken in hospital. It appears that viewers are not immediately affected by the presence of the hospital in the image. Instead, the attitude and perceived situation of the patient seems to play a bigger role than the context of the picture.
Be it laying on their lap, accompanying rallies for funding, or pictured in the outdoors as an expression of freedom, dogs serve a role as company to the patient in the four images analysed that contained them. Only two of the four were coded for emotional impact; in both cases, respondents indicated that they felt accompanied, energetic and free.
The outdoors is often pictured indirectly, simply as the scene of the photograph. In some cases, however, elements such as the forest or the sea are used as metaphor of freedom or an expression of calmness, especially by patients who have recently completed their last chemo therapy session.
The results are effective: all the pictures taken outdoors were labelled as emotionally positive. All respondents indicated a feeling of freedom (very clear, for instance, in an image picturing a woman at the beach), and felt energised, proud and courageous.
BALLOONS AND OTHER PROPS
Balloons and plush toys appear in three of the photographs analysed, covering patients who show their content from underneath the pile of colour. These are among some of the most mixed images in terms of their perception: while participants note they feel accompanied, they also indicate sadness as a reaction to the juxtaposition of the toys and the patient in bed.
Pictures of food are an Instagram staple and they’re present in the data set. They show a clear pattern, too: they’re mostly green. The colour green is associated with vegetables, which are presented in the set as a means to prevent colon cancer.
Results seem to indicate that images of food in relation to cancer are perceived positively, although it is early to make a conclusion: only 3 images of those tested for psychological impact contained food. One was marked as negative, while the other two were marked as positive.
There’s an underlying variable here that may impact perception: whether the food is presented in a motivational image (i.e. "food X is good for you", or "I'm having a granola mix in the garden") or in a “demotivational” image (such as the example of fried eggs).
MEMES, MOTIVATIONAL AND “DEMOTIVATIONAL” IMAGES
Memes, posters with text or motivational messages over a coloured background are common for certain types of cancer, especially for lung cancer, which is seeing a revival in attention online as youth post jokes about smoking.
Where the image is presented as a statement about what it’s like to live with cancer, participants respond negatively. Not because they don’t agree, but because it moves them inside and makes them feel sad, fearful, trapped and weak. The same applies to prescriptive images meant to tell patients how to behave, which participants perceived with anger (hence the “demotivational” name). An image that outlined the “top 5 regrets of the dying”, for instance, generated a very negative response.
Those images with text that were perceived positively are those that simply present contrasted information about the health properties of different foods, such as broccoli, or which encourage patients to "keep going".
IS THE IMAGE OF CANCER ALIGNED WITH THE EXPERIENCE OF PATIENTS AND FAMILY?
"I IDENTIFY WITH THE PICTURE"
Respondents identified the most with portraits and group images. Where they identify with the picture, they also tend to indicate a feeling of pride and courage, suggesting they feel connected to the patients through their experience accompanying their family or participating in awareness-raising campaigns. These are also images that are perceived positively, suggesting an alignment between representation and positive emotional impact.
"I DON'T IDENTIFY WITH THE PICTURE"
The final group of images are those that respondents could not align with. This is the most diverse group in terms of content, but it presents some clear traits: there are fewer portraits and the images contained are more explicit about illness.
A man holding a sign reading "cancer free", a woman undergoing treatment at home, a woman showing her evolution from diagnosis to regaining her strength, or patients laying alone in bed at the hospital. Results suggest that respondents had not been through that experience themselves and thus could not identify with those pictures. This reinforces the perception that this deeper, "real" side of cancer has a stronger psychological impact on viewers.
These images also show the male and female body more clearly. A young woman who'd suffered a double mastectomy, two muscular men showing their evolution, or a cake with the shape of breasts are amongst the images labelled as least "representative", most likely due to the respondent being of the opposite gender, but perhaps also as a reaction to the use of the body as part of the discourse of illness.
Of the 16 images labelled as non-representative, 8 were perceived negatively, 2 with mixed feelings, and 6 positively. Of those perceived negatively, images of uncertainty (showing patients waiting and alone) and demotivational posters were the ones that generated the most anger in respondents.
TOWARDS A CONSCIOUS PORTRAYAL OF ILLNESS ONLINE
This project is a first step towards a better understanding of the impact of social media in the perception of cancer. It demonstrates the role that certain elements in the images (portraits, smiles, colours and the use of blame and fear) play in their effect on people who have been exposed to cancer in their families or close circles.
Results show that images that respondents don't identify with obtain a higher median of likes (640 vs the 520 obtained by images they did identify with). Similarly, results show that images with a negative emotional impact receive more likes (784 median points vs the 538 of positive images). This could indicate that photographs that provoke emotions on the side of sadness and compassion gain more attention online, but it is early to confirm this.
This and other questions need to be explored in depth in future phases, which should look to conduct a deeper analysis of the discourse in the images studied.
Networks like Instagram provide a view of the daily life of millions of people. For cancer patients and their close ones, it can be both a source of information and a window into an experience of illness that's not representative of theirs. Pink ribbons, positive thinking, or calling patients "survivors" can have positive effects for some, but can affect the psychological well-being of others.
As we advance in the research of the causes of cancer and the opportunities to address them in the future, researchers need to keep sight of the emotional well-being of patients here and today. Promoting psychological support and aligning social media campaigns with the experience of patients are just two ways for a more conscious portrayal of illness.