Internet Use Among Women with Breast Cancer
Breast cancer affects more than 200,000 women per year in North America and is the most prevalent cancer for women and the second leading cause of cancer death in the United States (Perry & Bradley, 2002). Those diagnosed with breast cancer have a high need for information (Raupach & Hiller, 2002) and social support (Sharp, 2000). Although women draw on a variety of sources, such as doctors, nurses, family members, friends, and the media (Dunkel-Schetter, 1984), many are turning to the Internet to seek information and support (Sharp, 1999).
According to Ziebland (2004), online support communities are widely used among women with breast cancer for information exchange and social support, so it is important to gain a clear understanding of the psychological and social benefits that can be gained from online group participation, particularly during times of limited access to medical help and services (see Maloney-Krichmar & Preece, 2005).
Although the exact numbers of women seeking online support is unknown, in-depth interviews with 178 breast cancer patients revealed that as many as 42% use the Internet for medical information related to breast health issues and do so for an average of .80 hours per week (Fogel et al., 2002). The interviews further indicated that the average woman with breast cancer is 51, has 15 years of education, is white, and has an income of $60,000 or more (Fogel et al., 2002). A survey of 78 women with breast cancer showed that the current average Internet user is younger (about 45), lives in a metropolitan city, is married, educated, and works full-time (Winefield et al., 2003).
These findings parallel studies that have examined predictors of women's Internet access for general health information (Bowen et al., 2003; Pandey, Hart, & Tiwary, 2003). However, the findings are based on non-random samples and may not be representative of women who use the Internet for breast health issues. Additionally, research has begun to explore the feasibility of providing Internet support and information about breast cancer for women who are less educated and of low socioeconomic status and educational level (e.g., Gustafson et al., 1993; McTavish et al., 1995).
In one study, Owen et al. (2004) conducted a survey of 136 women with breast cancer to assess Internet access and perceived interest in online psychosocial treatment between 1999 and 2001. Although several barriers to Internet use were identified, access to the Internet increased between 1999 and 2001 and varied across age groups. Their results suggest that a wider demographic of women is now using the Internet for support and information about breast cancer. However, an accurate and detailed characterization of the population interested in Internet-based social support is still needed to assess the potential impact of Internet use on the psychosocial well-being of women with breast cancer. We therefore propose to examine the following research question:
RQ1: What is the profile of the average woman who is affected by breast cancer and who uses an online breast cancer support community?
Internet Use and Psychosocial Well-Being
Internet use in relation to psychosocial well-being is a topic of considerable interest and debate among academic researchers and practitioners. Studies that have examined psychosocial benefits of Internet use have yielded mixed findings. For instance, an early study examined the social and psychological impact of the Internet on 73 households during years 1 and 2 of their online use (Kraut et al., 1998). The findings showed that greater use was associated with declines in communication with family members, smaller social circles, and increases in depression and loneliness. However, a follow-up study showed that the negative results faded (Kraut et al., 2002), and additional studies have failed to replicate the original findings (Kraut et al., 2002; Wästlund, Norlander, & Archer, 2001).
Similar studies have been conducted to examine Internet use and psychosocial well-being among breast cancer patients. Again, the findings are somewhat mixed. In one study, breast cancer patients who turned to the Internet for social support tended to be more isolated and distressed than those who did not (Winefield et al., 2003). In another study, Internet health information searching was not associated with psychological coping in breast cancer patients (Fogel, 2004). These studies are inconclusive, however, since they cannot tell us whether more isolated and distressed women with breast cancer turn to the Internet, or whether the use of the Internet increases users' isolation and distress.
Additionally, these findings seem to contradict qualitative studies that suggest that Internet use offers positive psychosocial benefits (e.g., Sharf, 1997). For example, Fogel et al. (2002) examined the psychological benefits of Internet use for medical information for 178 breast cancer patients. They found that Internet use for breast health issues was associated with greater social support and less loneliness than Internet use for other purposes or nonuse. Other reports suggest that women with breast cancer find Internet-based discussion groups and bulletin boards helpful or even empowering (e.g., Gustafson et al., 1999; McTavish et al., 1995; Owen et al., 2004; Owens & Robbins, 1996; Weinberg, Schmale, Uken, & Wessel, 1995).
In addition to these mixed findings, most studies used a one-time measure of well-being that was collected at a distinct point in time. Psychological well-being is dynamic and may fluctuate according to an individual's life circumstances (Bradburn, 1969). There are indications that the type of information and support that women desire may change with time following diagnosis of breast cancer (Butow, MacLean, Dunn, Tattersall, & Boyer, 1997; Gray et al., 1998; Harris, 1998; Luker, Beaver, Leinster, & Owens, 1996). Hence, a single measure of well-being may not accurately assess the psychosocial needs and subsequent well-being of a patient with breast cancer, especially if taken during a particularly difficult time in the course of the patient's treatment or illness.
Instead, it may be useful to measure psychosocial well-being by examining the “life stories” of women who participate in online breast cancer communities. The Internet is increasingly becoming a medium in which women with breast cancer not only receive information and/or support about illness but also compose and circulate their own stories about breast cancer (Hardey, 2002; Pitts, 2004).
Telling stories enables individuals to construct their own identity (Hall, 1996) and articulate their experiences, perceptions, and understandings (Hyden, 1997). Kleinman (1988) asserts that personal narratives not only reflect an individual's experience with illness, but contribute to the experience and may shape personal relationships. Further, qualitative analyses of women's life stories suggest that in addition to information exchange and social support, women may gain other psychosocial benefits, such as personal empowerment, by participating in CMC support communities (e.g., Sharf, 1997; Weinberg et al., 1996). The results of a two and a half year study that examined an online health community revealed that participation in the community had positive outcomes by, for example, enhancing members' offline lives (Maloney-Krichmar & Preece, 2005). The authors suggested that these and other insights gained from the study would not be possible if not for their long-term immersion in the online community, thus suggesting the need to examine online communities longitudinally in order to better understand their benefits.
Thus, while it is important to identify potential psychosocial benefits of participation in online breast cancer communities, a perhaps equally important question to address is whether these benefits change over the life span of the individual's membership to the online discussion board. This information will help to inform psychosocial support interventions designed to meet specific psychosocial needs of cancer patients and survivors at various stages of their disease. The foregoing discussion translates to our next research question:
RQ2: What are the psychosocial benefits to using an online breast cancer community, and do these benefits change over time?
These results suggest that findings based on user versus non-user comparisons may not necessarily generate valid conclusions about degree of usage. Instead, a continuous level measure of Internet use may more accurately capture the degree of one's use of an online breast cancer community, which may yield stronger relationships between Internet usage and psychosocial benefits. This thinking translates to our third and final research question:
RQ3: Is there a relationship between amount of use of an online breast cancer community and the psychosocial benefits identified in RQ2?