Dropped Themes

This section refers to the codes and themes that were dropped. The reason why these concepts were left aside is twofold. Firstly, it was not possible to reconcile these codes with other existing codes. Secondly, the occurrences of associated codes were too few to be taken into account.

2.5.3.1 Dropped Variables for Driving Forces for Online Collective Action

2.5.3.1.1 Role of IT Artifacts on Online Collective Action (Navigational Structure and Visual Appeal)

During the interviews with patients’ testimonies were more focused on highly-emotionally-loaded feedback than comments on sites’ usability. Indeed, patients’

empathy, other-orientation volition or bounding values were at the center of concerns.

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Without these strong expressions of feelings on forums, design or navigational structure won’t appeal much to them, as feedback on the positive or neutral role of these two variables were somewhat mitigated (see Table 19). So, although navigation shouldn’t be an obstacle to browse fluently on the site, patients reported they paid more attention to what makes the sites warm and welcoming.

Table 19. Categorization of IT Artifacts and Role on Online Collective Action

Broad Nodes Role on Online

Collective Action Illustration Number of

References Navigational

Structure

Positive Role “Yes, the website is fluid and it meets my needs.”* 26 Neutral Role

“It is not that the site is particularly well thought out, but just I easily get what I’m searching for.

Besides I have my habits. Through conversations I easily find what I need.”*

23

Visual Appeal

Positive Role

“The appearance of the website brings to it seriousness and the trust that I will give it. Yes it is important.”*

12 Neutral Role

“The appearance of the website has little importance compared to the heat or human comfort that I can find through conversations.”*

27 * Quotes from interviews with breast cancer community patients

Indeed, during the course of the interviews, we were particularly interested in comments of patients with a long experience of attending patients’ virtual communities – who happened to frequent them for more than 5 years – highlighting the minor relevance of sites’ visual appeal:

‘’It is of little importance to me. You know the struggle of the disease will not be relieved by beautiful colors, there is something else in these spaces.’’ (Breast cancer community patient)

The design is of little importance in the end we are left with the warmth, the emotion conveyed.’’ (Breast cancer community patient)

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However, navigational structure attracted more interest by the same category of patients:

‘’Yes, in the end the site is simple, easy to navigate and it is important. We should not be embarrassed by the navigation, this is a prerequisite. Some are already anxious about their own request, and what’s more by the technology usage. ’’

(Breast cancer community patient)

Given the low rate of occurrences reached in the interviews, we won’t keep the

navigational structure and visual appeal concepts as driving forces of online collective action, considering them secondary. However, and following this qualitative approach, we recommend and will conduct in a future research study the consolidation of this study by testing these observations and therefore the two aforementioned dimensions in a quantitative analysis.

2.5.3.1.2 Preference over Medical Process, Doctors Positive Perception and Boredom Avoidance

Preference over Medical Process could be illustrated by:

“This could easily become an automatic behavior compared to making an appointment with a doctor who is not necessarily available before 2-3 months.

When you see him, well, you took one hour to go to the hospital. In consultation, you’ve waited 1 more hour and on the top of all that… he does not necessarily have the answer. So there, it is true that the immediate side, effective, with persons you trust, it can be tempting.” (Rare Disease Community patient’s family member) Doctors Positive Perception could be illustrated by:

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“It was during an interview with the surgeon, he recommended the site, thinking it might bring me something.” (Breast cancer community patient)

Boredom Avoidance could be illustrated by:

“At the same time, you're sick and you do not go out, you must do something to avoid boredom.” (Breast cancer community patient)

However, instigated by patients’ testimonies, none of these factors appeared to be significant enough to keep them as sub-nodes of driving forces for online collective action. Some patients mentioned these aspects and that’s why we highlighted them as emergent categories from the field, but out of the 54 codings, few interviews were neither relating nor confirming these statements. Therefore we decided to drop these values.

2.5.3.2 Dropped Variables for Restraining Forces for Online Collective Action

2.5.3.2.1 Complexity of Information

Complexity of Information could be illustrated by:

“But I thought it was complex, patients sometimes become too expert, one can’t understand them anymore.” (Breast cancer community patient)

Here again, although it was an interesting testimony, the occurrences were far too few, only rising to 2, to keep this value in our model. We, thus, left this factor aside.

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2.5.3.3 Dropped Variables for Background Factors of Online Collective Action

2.5.3.3.1 Open Virtual Space

Out of the two communities studied, stances against the opening or the closing of platforms were opposed.

On one hand, it is certainly understandable that parents of autistic children are reluctant to let strangers read the comments posted every day about the evolution of their

children’s disease. That is the reason why the Facebook group remained closed to public access

On the other hand, it may seem surprising that women facing the hardship of breast cancer are willing to open their platform to strangers – whether they express themselves anonymously or not. Furthermore, when they are asked about such behavior, this

question resonates as something that never came to their minds:

"I think it's normal. It is a question I have never thought of. No, for me it is something entirely normal." (Breast cancer community patient)

Due to the few mentions about this factor, the lack and sometimes absence of reflection about it when questioned, and the ethical matters this issue can raise, we decided to drop this category from the results of this research.

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