The club no one wants to join: Online behaviour on a breast cancer discussion forum
First Monday

The club no one wants to join: Online behaviour on a breast cancer discussion forum



Abstract
An analysis of the posts on a U.K.–based breast cancer discussion forum suggests that the type of online discourse found in this area is topic–led, not people–led. Most participants posted for a short time and then left the forums. Pre–existing social networks played no significant role — most people who came to this breast cancer forum did so because they did not have an offline network of people in a similar situation. The nature of interactions on such forums may suggest that the best model may be one where interaction is structured by topics and information and interaction is mediated through topical hierarchies.

Contents

Introduction
Discussion
Comparing social network sites with the breast cancer discussion forum
Conclusion

 


 

Introduction

Having spent the past three years managing an online discussion forum for women with breast cancer (the forums of the U.K.–based charity Breast Cancer Care) I was in no doubt that it was a great help to many who posted on its boards. Posters to the forum posted statements such as “this has been a lifeline to me” and “I don’t know what I would do if I couldn’t speak here.” This anecdotal evidence was backed up by research findings in the field, for example, a systematic review by Hoey, et al. (2008) of 43 research papers, including eight randomised control trials, found Internet peer support programs to be beneficial (Fox, 2009).

So it seemed fairly obvious that at least some participants found such a service useful. But why? What exactly did these people, suffering with a serious and potentially life–threatening illness, get out of participating in such a forum? And was the model of an asynchronous discussion forum with a moderator (on these forums a trained moderator or a specialist nurse) being overtaken by new developments on the Web? Was it likely that this type of forum would be replaced by groups on Facebook, or other social networking sites?

In order to answer these questions I took a more detailed look at posts made to the Breast Cancer Care forums from December 2005 to December 2007. These were publicly available forums, split into various categories for each stage of the disease. The forums were easy to find through a Google search, and are not passworded for readers, so all messages are available to anyone looking on the Web, although participants have to log in to post.

I looked at how often, and for how long people posted on this forum. Then I looked at the subjects of their posts. What I found suggests that, at least with the disease of breast cancer, people coming online to deal with a diagnosis of a serious illness are looking for a very specific form of help and social contact, very different from the patterns of contact which characterise social network sites.

 

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Discussion

Over the period which I researched (December 2005 to December 2007) the site registered over 5,000 people and received around 100,000 posts during this period.

Frequency of posting

Most people who registered with the Breast Cancer Care forums did not post at all. It was not possible to approach these people to find if their needs were fulfilled just by reading these forums, but research on other health forums suggests that so–called “lurkers” self–report the same feelings of empowerment and control over their lives with illness as those who actually post (Uden–Kraan, et al., 2008).

This pattern of reading, but not posting, is common on health discussion forums with some research suggesting 45 percent of users of health discussion forums never post (Nonnecke et al., 2006).

If it was difficult to find out more about people who did not post, once I began to look at those who did some clear patterns began to emerge. I found that those who did post tended to only do so for a short time and at periods of crisis in their illness (just after they had been diagnosed, for example). They were usually seeking information on their illness and wanted to compare their experience with others who had a similar diagnosis: this could cover everything from emotional responses to questions of mortality to advice on where to buy headscarves to cover hair loss following chemotherapy. But whether deep emotional issues or more practical questions were raised, short rather than long term use and people “dropping in” for support or an answer to a question was the dominant pattern.

This can be seen in Figure 1 which breaks down all the posts made to this forum for two years.

 

Figure 1: Frequency of posts, December 2005–December 2007
Figure 1: Frequency of posts, December 2005–December 2007.

 

Infrequent posters

As can be seen from Figure 1, among clients who did post, the biggest group posted under 10 times. This reflects a pattern of people at key stages of their cancer journey coming to the forums to get information, support and companionship. Once they have passed through that stage they stop posting. Many of these people are seeking information from “people who have been there” — they may have read the forums and seen that there are other posters who have shared their experience and hope that they can benefit from their knowledge. In some cases it may be that they wish to glean this information from their peers rather then from health professionals, although professional moderators and clinical nurse specialists regularly post in response to inquiries on this forum and these interventions are usually welcomed. The small number of posts from this group suggests that most people who interact on this forum want contact at times of need, but do not want a longer term relationship with other posters.

Very frequent posters

At the other end of the spectrum I looked at people who posted a lot. As can be seen from Figure 1 there is a tiny group of people who posted more than 100 times. I wanted to know how significant this group was in determining the atmosphere on the site. Did this group act as “power users” on the forum? Did they do the emotional heavy lifting which enabled the less frequent posters to gain comfort from the forums? This behaviour has been noted on other peer support forums and I was interested to see if it existed here (Winefield, 2006).

An answer to this question could provide useful information to organisations (often charities or non–profits) who want to set up and support this type of online support service. Maintaining health forums such as these is an often costly enterprise with professional moderators reading the posts and responding to inquiries. I wanted to find out if this group of heavy posters provide a back up to these professionals?

I think I can answer this question and the answer is “no”. “No” because of one interesting finding — even people who post a lot stop very suddenly and with no explanation. To my surprise, I found that even these very heavy posters do not linger once the forums are no longer useful to them.

If the behaviour of the Breast Cancer Care heavy posters is typical (and research on other forums does need to be carried out) then the use of “power users” as volunteer workers must be approached with caution — they may move away unexpectedly and at any time.

To investigate this unexpected behaviour further, I picked 20 of this heavy posting group at random and looked at the very last post they had made. Out of this randomly selected group, only two said they were leaving the forums (both saying they were going because their treatment had finished). Another two of the group said they were unhappy with a decision the moderator had made, but they did not say they were leaving. The other 16 in the group made last posts which did not suggest that they would not be back posting again soon; there was nothing in their last post to suggest it was their last.

Duration of posting

As well as looking at how many times people posted, I also looked for how long a period they posted. As would be expected, of the people who post less than 10 times almost all post for less than six months. Most people who post between 10 and 20 times also post for less than six months and very few people post for longer than one year (see Figure 2).

This fairly short duration of posting is probably an indication of the success of these forums as it suggests that people going through a difficult time get some information and solace then get on with their lives when their health crisis abates.

If most people who use a discussion forum such as the Breast Cancer Care forums manage to move on, then this would suggest a healthy psychological pattern.

But if this was a good outcome for the participants on the forums, it did suggest that professional staff would be necessary to help with information and continuity on the site as the group of long–term participants who might have accumulated the knowledge to do this was so small.

 

Figure 2: Duration of posts, December 2005–December 2007
Figure 2: Duration of posts, December 2005–December 2007.

 

Subjects of posting

What was emerging was a pattern where most posters to these forums came at a time of crisis, where they felt they needed to talk to someone in a similar situation, once this need was fulfilled they moved away.

If this pattern was true then it should be reflected in the subjects on which people posted. I wanted to see if all the posts were about cancer, or if people branched out into other areas.

To find out more, I took a random sample of 100 people who had posted more than 10 times on this forum (during the two years from December 2005) and broke down the posts by category. What the breakdown by subject showed is that people overwhelmingly posted about their cancer, its treatment, fear of its spread or recurrence, the side effects of this treatment. Even subjects (listed here as other) which were not directly about cancer were usually tied up with living life with cancer — issues such as getting travel insurance, talking to children about illness, asking whether complementary therapies were beneficial or inquiring about joining a clinical trial for a new drug were all mentioned in this section.

 

Figure 3: Subjects of posts, December 2005–December 2007
Figure 3: Subjects of posts, December 2005–December 2007.

 

 

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Comparing social network sites with the breast cancer discussion forum

From my research it would appear that, at least on the Breast Cancer Care discussion forum, people came for a short time to talk to people with whom they had no off–line relationship, about one very specific issue (their illness).

This seems a very long way from the rationale for social network sites (SNSs) — to contact friends. As Facebook says of itself “Your friends on Facebook are the same friends, acquaintances and family members that you communicate with in the real world.”

Although exceptions exist, the available research suggests that most SNSs primarily support pre–existing social relations. Ellison, et al. (2007) suggest that Facebook is used to maintain existing off–line relationships or solidify off–line connections, as opposed to meeting new people. Donath and boyd (2004) extended this to suggest that “public displays of connection” serve as important identity signals that help people navigate the networked social world, in that an extended network may serve to validate identity information presented in profiles.

If the Breast Cancer Care forums are representative, health forums could not be more different to this. They are not about maintaining off–line relationships. If social networking sites are people–led then these discussion forums are topic/interest–led. Pre–existing social networks play no significant role — most people who came to this breast cancer forum did so because they did not have an off–line network of people in a similar situation.

It is noticeable that a very high proportion of younger (under 45) women and especially younger women with secondary (incurable) breast cancer turned to these forums. It seems reasonable to speculate that one reason for this is because breast cancer is a relatively rare disease in younger women and incurable breast cancer is even rarer. These women will find it difficult to meet others with a similar condition in the off–line world. For example, most women in hospital clinics are likely to be from their mother’s generation rather than from their own. Online forums are one of the few places where these women are likely to meet. Sometimes they will arrange to meet in the real world, occasionally they will set up a Facebook or other online networking closed group, but usually their discourse is limited to online interaction (and sometimes e–mail and telephone). Usually, there is no desire to meet off–line or to discuss life outside of the effects of the illness.

It is however worth considering whether such forums niche social networks? If we look at the development of the major SNSs then we can see some characteristics present on health Web sites, but some which are not. Some SNS set–ups have explicitly sought narrower audiences. Some, like aSmallWorld (http://www.asmallworld.net/) and BeautifulPeople (http://beautifulpeople.net), intentionally restrict access to appear selective and elite. Other sites are based around identity or belief — sites such as BlackPlanet (http://www.blackplanet.com/) and MyChurch (http://www.mychurch.org/). But these models do not seem to fit the cancer experience any better than the mainstream social networking sites.

Perhaps a better description of the behaviour of people who post on sites concerned with serious illness is of having to adopt an identity which they do not want. A common phrase on the Breast Cancer Care forums was “the club none of us wanted to join.” People join because they need help and support and derive comfort from interacting with others in a similar situation, but they do not relish this as they would rather not be ill at all. From this perspective ideas about online interaction as actualising an identity as a creative process are inappropriate.

Maybe health discussion forums should resist any temptation to adapt to a social network model where sites are structured as personal networks with the individual at the centre of their own community. A better model may be one where interaction is structured by topics and information and interaction is mediated through topical hierarchies.

If social network sites replicate real world relationships off–line then there is no indication that most of the posters on the particular health Web site which I have studied wish to do this. Instead their interactions are based around one part of their lives, their cancer diagnosis and treatment, which is an unpleasant and unwelcome intrusion. Their interactions around this part of their lives are as short–lived as they can make them and are with those who share similar features concerning their disease not similar features concerning the other parts of their lives.

At the time I studied this Breast Cancer Care site, profiles of participants were not available and there was very little demand for this facility from those registered on the site. This would be further evidence that health forums can function in a very different way to social networks.

 

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Conclusion

On the evidence of this one forum, health online services which offer peer support will need some outside support and moderation as the power users, emotional volunteer workers which keep many online interactive sites going are just not there. Short term usage and limited social engagement is the dominant pattern. Many of the features of social networks are not appropriate for this group. End of article

 

About the author

Ann Jaloba is a consultant and writer on online health services. She is currently undertaking a PhD in language usage on health discussion forums.
E–mail: annjaloba [at] btinternet [dot] com

 

References

J. Donath and d. boyd, 2004. “Public displays of connection,” BT Technology Journal, volume 22, number 4, pp. 71–82.http://dx.doi.org/10.1023/B:BTTJ.0000047585.06264.cc

N.B. Ellison, C. Steinfield, and C. Lampe, 2007. “The benefits of Facebook ‘friends:’ Social capital and college students’ use of online social network sites,” Journal of Computer–Mediated Communication, volume 12, number 4, article 1, at http://jcmc.indiana.edu/vol12/issue4/ellison.html, accessed 1 July 2009.

S. Fox, 2009. “Navigating the new health care delivery system,” at http://www.slideshare.net/PewInternet/navigating-the-new-health-care-delivery-system?type=document, accessed 1 July 2009.

L. Hoey, S. Ieropoli, V. White, and M. Jefford, 2008. “Systematic review of peer–support programs for people with cancer,” Patient Education and Counseling, volume 70, number 3, pp. 315–337.http://dx.doi.org/10.1016/j.pec.2007.11.016

B. Nonnecke, D. Andrews, and J. Preece, 2006. “Non–public and public online community participation: Needs, attitudes and behavior,” Electronic Commerce Research, volume 6, number 1, pp. 7–20.http://dx.doi.org/10.1007/s10660-006-5985-x

C.F. van Uden–Kraan, C.H.C. Drossaert, E. Taal, E.R. Seydel, and M.A.F.J. van de Laar, 2008. “Self–reported differences in empowerment between lurkers and posters in online patient support groups,” Journal of Medical Internet Research, volume 10, number 2, at https://tspace.library.utoronto.ca/html/1807/16660/jmir.html, accessed 1 July 2009.

H.R. Winefield, 2006. “Support provision and emotional work in an Internet support group for cancer patients,,” Patient Education and Counselling, volume 62, number 2, pp. 193–197.http://dx.doi.org/10.1016/j.pec.2005.07.002

 


Editorial history

Paper received 3 June 2009; accepted 15 June 2009.


Creative Commons License
“The club no one wants to join: Online behaviour on a breast cancer discussion forum” by Ann Jaloba is licensed under a Creative Commons Attribution–Non–Commercial–No Derivative Works 2.0 U.K.: England & Wales License.

The club no one wants to join: Online behaviour on a breast cancer discussion forum
by Ann Jaloba.
First Monday, Volume 14, Number 7 - 6 July 2009
http://www.firstmonday.dk/ojs/index.php/fm/article/view/2563/2239





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