Seeking Support on Facebook: A Content Analysis of Breast Cancer Groups

Original Paper

Seeking Support on Facebook: A Content Analysis of Breast Cancer Groups

Jacqueline L Bender^1,2, BSc MSc; Maria-Carolina Jimenez-Marroquin^1,3, MD; Alejandro R Jadad^1,2,3, MD DPhil

¹Centre for Global eHealth Innovation, University Health Network, Toronto, ON, Canada
²Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada
³Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

Corresponding Author:

Jacqueline L Bender, BSc MSc

Centre for Global eHealth Innovation
University Health Network
R. Fraser Elliott Building, 4th Floor
190 Elizabeth St.
Toronto, ON M5G 2C4
Canada
Phone: 1 416 340 4800
Fax: 1 416 340 3595
Email: jbender [at] ehealthinnovation.org

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ABSTRACT

Background: Social network sites have been growing in popularity across broad segments of Internet users, and are a convenient means to exchange information and support. Research on their use for health-related purposes is limited.
Objective: This study aimed to characterize the purpose, use, and creators of Facebook groups related to breast cancer.
Methods: We searched Facebook (www.Facebook.com) using the term breast cancer. We restricted our analysis to groups that were related to breast cancer, operated in English, and were publicly available. Two of us independently extracted information on the administrator and purpose of the group, as well as the number of user-generated contributions. We developed a coding scheme to guide content analysis.
Results: We found 620 breast cancer groups on Facebook containing a total of 1,090,397 members. The groups were created for fundraising (277/620, 44.7%), awareness (236, 38.1%), product or service promotion related to fundraising or awareness (61, 9%), or patient/caregiver support (46, 7%). The awareness groups as a whole contained by far the most members (n = 957,289). The majority of groups (532, 85.8%) had 25 wall posts or fewer. The support oriented groups, 47% (27/57) of which were established by high school or college students, were associated with the greatest number of user-generated contributions.
Conclusions: Facebook groups have become a popular tool for awareness-raising, fundraising, and support-seeking related to breast cancer attracting over one million users. 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.

(J Med Internet Res 2011;13(1):e16)
doi:10.2196/jmir.1560

KEYWORDS
Internet; Facebook; breast cancer; supportive care; peer support; health promotion; fundraising

Introduction

Online communities present a convenient means to exchange information and support with people in similar circumstances and are increasingly being used for health purposes [1], particularly by breast cancer survivors [2]. One of the most popular and perhaps most successful online communities, if success is based on sheer numbers of registered users, is the social network site Facebook (www.Facebook.com). Just over 5 years since its launch, Facebook became the second most visited website in the world (second only to Google) [3], with over 500 million active users (those who returned to the site within the last 30 days) worldwide [4]. While young adults are still more likely to use social network sites [5], the fastest growing demographic of Facebook users is women 55 years and older [6], which corresponds to the average age of onset of breast cancer [7]. Although recent studies indicate that Facebook groups are used for health purposes [8], little is known about how this resource is used by people affected by breast cancer.

Online communities are “virtual social space(s) where people come together to get and give information or support, to learn or to find company” [9]. They tend to be characterized according to the activity (eg, support) or the people that they serve (eg, breast cancer survivors), or the communication technology that supports them (eg, message board) [10]. Initially, online communities were supported by mailing lists, and asynchronous and synchronous message boards. More recently online communities have formed around blogs, wikis, and social network sites, commonly referred to as Web 2.0 social media applications [11]. Social network sites are differentiated from other online communities based on their ability to enable users to display their social networks. Their backbone consists of visible user profiles that display an articulated list of friends who are also users of the system [12]. While other online community platforms enabled users to create a list of friends, these networks were not displayed or accessible to other users. This unique feature of social network sites is hypothesized to result in connections between individuals that would not otherwise have been made [12].

Research on online communities for health purposes has primarily focused on the use and effects of mailing lists and message boards by breast cancer survivors, who have been shown to be one of the groups most likely to seek support from peers on the Internet [2]. Qualitative studies have revealed that these types of online communities provide breast cancer survivors with a safe, relatively anonymous space to communicate about sensitive and potentially stigmatizing topics [13], reduce feelings of isolation and uncertainty regarding prognosis and ambiguous painful symptoms [14], and enable them to become more informed and better prepared for their interactions with the health system [15]. Randomized controlled trials have shown that professionally moderated mailing lists and message boards for breast cancer survivors can reduce depression, stress, and cancer related trauma, and can enhance social support [16-18].

Relatively little is known about the use of social network sites for health purposes. Keelan and colleagues [19,20] examined the use of YouTube videos and Myspace blogs as a source of information on immunization and found a subcommunity of users critical of or with divergent views about vaccines. Research by Scanfeld and colleagues has demonstrated that Twitter has been used to share information on the use and side effects of antibiotics [21]. To our knowledge, there is only one study of the use of Facebook for health purposes. Farmer et al [8] examined noncommunicable disease groups and found a considerable number of patient and caregiver support groups related to malignant neoplasms. Surprisingly, breast cancer groups were notably absent from their analysis.

Breast cancer is the most common cancer among women worldwide [22], and thanks to advances in detection and treatment, women affected by this disease form the largest group of female cancer survivors [23]. However, the posttreatment period carries numerous physical and psychosocial needs that often go unaddressed by professional health care services [23]. Addressing the needs of this growing population of cancer survivors has been identified as supportive care’s new challenge [23,24]. Social network sites could provide breast cancer survivors with a convenient means to connect with a diverse network of peers, thus facilitating access to a wider array of supportive information and services. In fact, some have questioned the utility of government-funded personal health care solutions, when social network sites provide users with the tools to create and share health resources on their own [25]. Little is known about how people affected by breast cancer use social network sites. This study attempted to fill some of the gaps by presenting a characterization of the purpose, patterns of use, and creators of Facebook groups related to breast cancer.