We found a large number of breast cancer-related groups on Facebook (n = 620) with over one million members. Unlike most disease-specific online communities, the majority of breast cancer groups on Facebook were created for fundraising and awareness purposes, rather than supportive care. The awareness groups as a whole contained by far the most members (n = 957,289), while the support groups were associated with the greatest number of user-generated contributions. Many of the individuals who did create the groups for supportive care purposes were adolescents and young adults, and the majority appeared to be living in the United States or Canada. None of the support group creators appeared to be health care professionals or associated with a health care organization.
Unlike in our study, Farmer et al [8
] found patient (47.4%) and caregiver support groups (28.1%) to be more common than fundraising groups (18.6%). However, Farmer et al did not include breast cancer groups in their sample. Of relevance, the authors did include lung, stomach, and colorectal cancer as search terms, and found considerably fewer groups (n = 55) and members (n = 77,832) associated with these neoplasms, than we found associated with breast cancer (620 groups with 1,090,397 members). This difference is largely due to the greater number of fundraising and awareness groups we found associated with breast cancer, which is not surprising given that the breast cancer fundraising movement is one of the largest and most successful survivor-driven social movements, which other disease groups seek to emulate [26
]. However, we also found more support groups for breast cancer (n = 47) than Farmer et al found for lung, stomach, and colorectal cancer combined (n = 32). Although breast cancer is the most common neoplasm in women, lung, stomach, and colorectal cancers are the three neoplasms associated with the greatest morbidity and mortality among both men and women worldwide [22
]. Hence, the difference in the number of support groups on Facebook associated with these cancers cannot be attributed to their relative prevalence, and may instead reflect a greater tendency for people affected by breast cancer to join online communities than people affected by other conditions [2
In contrast to breast cancer-specific online communities, which are used primarily to meet treatment information, symptom management, and emotional support needs [27
], breast cancer groups on Facebook were not primarily used for supportive care purposes. One of the frequently reported advantages of breast cancer-specific online communities, which to date have focused on mailing lists and message boards, is the relative anonymity and privacy that they provide, which allows users to communicate about personal and socially stigmatizing topics [13
]. Although Facebook groups provide facilities for discussion forums based on shared experiences, the visibility of user profiles and personal networks reduces the relative anonymity of the encounter and, if open to the public, which all groups in this study were, they have the potential to attract a much wider audience. This core functionality of social network sites, which gives users access to a more diverse and extensive network, makes them ideally suited for fundraising and awareness-raising purposes, as this study has demonstrated, but may make them less suitable for support-seeking related to topics that are embarrassing or socially stigmatizing [2
Many of the individuals who did create the groups for supportive care purposes were adolescents and young adults, and the majority appeared to be living in the United States or Canada. These findings reflect the site’s user demographics at the time study was conducted. In the fall of 2008, the largest demographic of Facebook users was 18-24 years old [5
], the United States reported more Facebook users than any other country, and Canada had the highest penetration of Facebook users per capita [28
]. While some support groups were created for a loved one affected by breast cancer (perhaps a less technology-savvy parent), many young people established Facebook groups to obtain support for themselves.
Adolescents and young adults can experience significant distress when a loved one has cancer [29
], and research suggests that their unique needs are often poorly met both within and outside the family [31
]. Social network sites such as Facebook could provide this group with a convenient and familiar means to accumulate coping resources. Use of these sites is associated with greater levels of bridging social capital,
or access to information and resources through a diverse set of acquaintances, and bonding social capital,
or emotional support from close friends [32
]. Both of these, according to the theory of stress and coping, can promote coping efforts and lessen negative appraisals of events, in turn reducing or buffering anxiety [33
]. Furthermore, Ellison et al [34
] have shown that college students who are active on Facebook experience higher levels of both forms of social capital, and Burke and colleagues [35
] have confirmed that these findings generalize to older users and English speakers outside the United States.
Notwithstanding the large number of members that the breast cancer groups attracted, there were relatively few user contributions overall, and in the fundraising, awareness, and promote-a-site groups in particular. These findings support the consistently reported observation that online communities attract significantly more lurkers (visitors who do not post messages) than posters [36
]. However, the fundraising, awareness, and promote-a-site groups were not created to stimulate discussion but rather to promote a message, event, product, or service. Although activity, which is often judged by the number of posts, is a key determinant of a successful online community [37
], posting messages in online health communities is not necessary to obtain the empowering effects from participating in them [38
]. Likewise, it may be possible to benefit from joining a Facebook group without contributing content, depending on the purpose of the group or the motivation of the joiner. According to a study by Park et al [39
], college students join Facebook groups not just to socialize, but also to obtain information about events, to seek self-status, and to find entertainment. In addition, Park and colleagues found that those who joined Facebook groups for information purposes were more likely to participate in civic and political activities, suggesting that Facebook groups may play an important role in facilitating youth engagement.
The findings of this study are valuable because they provide information on the health-related use of the most widely popular social network site in existence. They indicate that Facebook groups are being used by a considerable number of people affected by breast cancer for fundraising and awareness purposes, and to a lesser extent supportive care. That being said, our findings should not be interpreted to imply that Facebook is rarely used for supportive care purposes, given that several ways to solicit or provide support on Facebook were not examined in this study, including private messages, wall posts on personal profile pages, and status updates. These findings do suggest that Facebook may play an important role in facilitating public engagement in health promotion and fundraising activities, particularly among youth.
This study has important limitations. First, we were unable to collect demographic information on 53% (30/57) of the support group creators due to their use of privacy settings. However, this finding suggests that users of Facebook not only are becoming aware of the public nature of their online activities, but also are activating the privacy measures offered. In fact, all but one of the support group creators in our sample restricted their personal Facebook profiles to their networks, whereas a study of Facebook users conducted in 2005 found that only 0.06% of college students restricted the visibility of their profiles to members within their networks [40
]. Since then, significant changes made to the platform and user base of Facebook might in part explain the increased use of privacy settings by this sample, such as the launch of the NewsFeed feature, which provides updates on the activities of friends [41
], the introduction of third-party-developed applications [42
], and the expansion of registration to anyone.
Another related limitation was our reliance on user self-reported data (that were available on the group page itself or in the search result content) to infer the approximate age and geographic location of the support group creators. This information is possibly incorrect or fabricated. In addition, we could not determine the exact number of unique individuals affiliated with a particular type of breast cancer group on Facebook, given that a single user could be a member of multiple groups. Therefore, the total number of members affiliated with each type of breast cancer group could be inflated. At the same time, the total number of breast cancer groups identified in this study is likely only a portion of the total number of breast cancer groups on Facebook, given that we restricted our study to groups in English, while Facebook is available in more than 70 different language versions [4
Lastly, we encountered numerous challenges while investigating the nature of breast cancer groups on Facebook that were primarily related to its limited functionality as a search tool. The search bar yields an imprecise yield (eg, “>500 groups”), the order of the search results is inconsistent and unclear, and the search is limited to the title of the group. Since the time we conducted our study the search tool has been enhanced but, to our knowledge, these specific issues have yet to be resolved. We contacted Facebook to notify them of these technical issues and obtained an encouraging response. Collaboration with platform owners would certainly facilitate future research in this area.
Further research is warranted to understand the implications of participating in health-related groups on Facebook. While other researchers have examined site activities that lead to higher levels of social capital [34
], no known studies have examined the impact of participating in a health-related group on Facebook. It is also unknown whether general social network sites such as Facebook are as effective as disease-specific online communities in providing health-related information and support, and for whom. Given the importance of anonymity in facilitating disclosure in online breast cancer communities [13
], research is warranted to examine breast cancer survivors’ perceptions of social network sites as a source of supportive care in comparison to other sources. Lastly, a better understanding is needed of the privacy implications of sharing personal health information on public social network sites, which has raised concern [25
], leading some to advise against disclosing personal information on these sites [8
Facebook groups have become a popular tool for awareness-raising, fundraising, and support-seeking related to breast cancer, attracting over one million users by the end of 2008. Given their popularity and reach, further research is warranted to explore the implications of social network sites as a health resource across various health conditions, cultures, ages, and socioeconomic groups.