Abstract

This study examines the psychosocial benefits of Internet community group participation for women with breast cancer. A longitudinal content analysis of more than 33,200 postings from an online breast cancer bulletin board, and thematic analysis of the "life stories" of 100 women randomly selected from the bulletin board, was conducted. Psychosocial benefits included: receiving/giving information; receiving/giving social support; affect toward the discussion board, optimism toward breast cancer, increased skill or ability to cope with the disease, improved mood, decreased psychological distress, and strategies to manage stress. Over time, a positive shift was shown in women's affect toward the breast cancer and online community, and a positive correlation was found between amount of participation and psychosocial well-being.

Introduction

Research on computer-mediated communication (CMC) has begun to examine the question of whether Internet use affects psychosocial health. One communication phenomenon of considerable interest is Internet use among women with breast cancer and psychosocial well-being (e.g., coping, depression). Research from a variety of disciplines, including CMC, reflects a growing interest in determining the Internet's ability to affect psychosocial health among breast cancer patients and survivors (e.g., Owen, Klapow, Roth, Nabell, & Tucker, 2004; Sharf, 1997; Weinberg, Schmale, Uken, & Wessel, 1996).

However, much of the research on this topic is ambiguous. 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, Coventry, Pradhan, Harvey, & Lambert, 2003). In another study, Internet use for addressing breast health issues was associated with greater social support and less loneliness than Internet use for other purposes or nonuse (Fogel, Albert, Schnabel, Ditkoff, & Neugut, 2002).

These findings leave questions about the psychosocial benefits of Internet use and do not provide a clear understanding of the psychosocial benefits of Internet community group participation. Lacking also is a longitudinal examination and characterization of women who use online breast cancer support communities. There are indications that the information and social needs of breast cancer survivors are complex and change over time (Monnier, Laken, & Carter, 2002), suggesting that psychosocial benefits afforded by online communities may also shift or change. Thus, it would be useful to examine individuals' psychosocial well-being across the life-span of their membership to the online support community to determine whether benefits change over time.

The purpose of this research is to examine longitudinally the psychosocial benefits of Internet community group participation for women with breast cancer. To overcome some of the limitations of earlier studies, a multi-method design that combines quantitative and qualitative data analysis techniques was selected. The research examines 100 women's "life stories" over a three-year period to gain additional insights into their Internet use of an online breast cancer bulletin board. Specifically, we: 1) develop a profile of women with breast cancer who use an online support community; 2) identify potential psychosocial benefits of the online support community and determine whether these benefits change over time; and 3) examine whether there is a relationship between amount of use and psychosocial benefits of Internet community group participation.

Literature Review

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?

A related issue is the manner in which Internet use has been measured. Most studies to date have examined Internet use in terms of users and non-users, which may not accurately capture degree of use among Internet users. For instance, the results of a national sample from DDB Needham Life Style data revealed few differences between users and non-users in terms of social involvement and psychological well-being (Wells & Chen, 2000). However, when Internet users were segmented according to degree of Internet use, as denoted by light, moderate, and high use, significant differences emerged. For instance, a greater percentage of light users were more extroverted, and a greater percentage of heavy users were depressed, as compared to the other segments.

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?

Method

Context

The context selected for this study was an online breast cancer community in the form of a bulletin board, or our preferred term, discussion board. Online discussion boards enable members to post messages to be read by others immediately or at a later date (Sharp, 2000).

Although scholars do not agree on a single definition of an online community (Preece, 2000), for the purpose of this study, we defined an online community as: a group of individuals with a common interest or a shared purpose, whose interactions are governed by policies in the form of rules, rituals, or protocols; who have ongoing and persistent interactions; and who use electronic communication as the primary form of interaction to support and mediate social interaction and facilitate a sense of togetherness (Bressler & Grantham, 2000; Dennis, Pootheri, & Natarajan, 1988; Figallo, 1998; Jones, 1997; Preece, 2000; Ridings & Gefen, 2004; Smith, 1999).

The online discussion board we selected meets the criteria for an online community: Members share a common purpose in their fight against breast cancer; members have ongoing and persistent interactions that facilitate a sense of togetherness; the discussion board is governed by clear rules and policies; and electronic communication is their primary means of communication. In addition to these characteristics, our discussion board is sponsored by a non-profit organization, which meets one of the attributes proposed by Porter's (2004) typology of virtual communities. However, the name of our discussion board is kept anonymous to maintain the privacy of members and adhere to Campus Review Board policies.

Design

Our study used a multi-phase, multi-method design (see Table 1). The primary method was participant-observation, which has been used by other scholars to examine online communities (e.g., Braithwaite, Waldron, & Finn, 1999; Maloney-Krichmar & Preece, 2005).

Participant observations included examination of messages in an online breast cancer bulletin board, posted over a three-year period. Participant observation over an extended period of time provided a rich understanding of the community and its members (Maloney-Krichmar & Preece, 2005). In addition to extended observation of the community, two research tools from the social sciences (content analysis and thematic analysis) were used to provide additional insights into those who use the community and benefits gained from that use. Through an elaborate statistical computation, described below, we also examined the relationship between frequency of use and psychosocial benefits of the online community.

Data Collection Techniques

Two data collection techniques were used: content analysis and thematic analysis. Content analysis is a method of studying and analyzing communication in a systematic, objective, and quantitative manner for the purpose of measuring variables (Kerlinger, 1986). Thematic analysis is a qualitative method that focuses on identifying themes or patterns of living and/or behavior (Taylor & Bogdan, 1984).

As shown in Table 1, content analysis was used at all three phases of the research and thematic analysis was used in Phase II of the research. The content analysis examined and identified characteristics of women who use the online discussion board. This was accomplished in two ways: first, by examining the membership profiles that every member is required to fill out before using the discussion board; and second, by reading individual member postings to the discussion board.

Thematic analysis identified psychosocial benefits, and the content analysis was used to quantify those benefits, predetermined by the thematic analysis. Using a combination of quantitative and qualitative methods triangulated our observations and data and provided greater insights than a single method, which helped to understand more fully the nature of online breast cancer discussion boards (Kerlinger, 1986).

Sample

Our sampling frame included a combination of cross-sectional and longitudinal data, which helps to overcome limitations of a single sampling technique (Shklovski, Kraut, & Rainie, 2004). We sampled cross-sectionally across time to isolate a group of female members directly affected by breast cancer. A one-week period was randomly selected (October 11-17) to narrow the sample. Within the one-week period, 100 subjects (a.k.a. "posters"—the unit of analysis in our study) were randomly selected. Archival data were used to track and record the "life stories" of these 100 women during their entire membership to the online discussion board, and a total of 33,200 postings were read during the sampling period.

Coding Categories

There were four major categories in our study, which were based on previous coding schemes (e.g., Fogel, 2004; Easterling, 2001; Hardey, 2002; Rozmovits & Ziebland, 2004; Sharf, 1997). The four categories were: demographics (age, number of children, marital status, occupation), geographics (city, state, county), breast cancer factors (stage of breast cancer and family history), and psychosocial benefits-predetermined by the thematic analysis (information exchange, social support, improved affect toward the discussion board, greater optimism toward breast cancer, increased skill or ability to cope with the disease, improved mood, decreased psychological distress, and the ability to manage stress).

Coders and Intercoder Reliabilities

There were two coders, one undergraduate male and one graduate male. Intercoder reliabilities were taken at the beginning and end of the study. Scott's pi (1955) index was used to calculate intercoder agreement for the nominal level variables (i.e., marital status, income, occupation, state, city, stage of breast cancer, family history, date joined), yielding an overall reliability of .98. Percent agreement was used to calculate the continuous level variables (e.g., age, number of children, number of postings), yielding an overall intercoder agreement of 85%. The thematic analysis was also coded by the same two individuals, and a minimum reliability of 75% was reached.

Procedures

Content Analysis

The online discussion board provided member information in several different formats, two of which were used here: member profiles and individual postings. The discussion board requires every member to fill out a "member profile" prior to participating in the online discussion board. The member profile includes information about marital status, number of children, residence city/state, occupation, and so on. This information was coded in our content analysis to address RQ1. The member profile also listed the total number of postings and the date/time membership began, which we used to address RQ3. In cases where information was missing, coders also read each individual's "life story"—defined as a chronological account of an individual's struggle with cancer—determined by reading each woman's postings to the online discussion board from the time membership began to the time of our analysis (October 17, 2004). This procedure was repeated for all 100 women in our sample.

Thematic Analysis

The thematic analysis was used to identify psychosocial benefits of the online discussion board. This was accomplished by reading all postings of each subject in sequential and chronological order. Coders then identified themes related to psychosocial benefits. For example, in coding psychosocial benefits, the coders observed that affect toward breast cancer emerged as a common theme.

The next step was to identify all data that related to the already classified patterns in an effort to expound upon them. To continue the above example, the coders observed that affect toward the cancer became more positive for some women over the course of their postings. Next, the related patterns were combined and catalogued into sub-themes, defined as units derived from patterns such as "conversation topics" or "recurring activities" (Taylor & Bogdan, 1989, p. 131). Themes were then identified by merging components or fragments of ideas or experiences, which are often meaningless when viewed alone (Spradley, 1979). Eight themes emerged from the thematic analysis: 1) information exchange, 2) social support, 3) improved affect toward the discussion board, 4) greater optimism toward breast cancer, 5) increased skill or ability to cope with the disease, 6) improved mood, 7) decreased psychological distress, and 8) ability to manage stress. These eight themes were recoded and quantified with the content analysis to address RQ2 and RQ3.

Since there were thousands of postings for some members, 10% of the beginning (time membership began) and 10% of the ending (October 17, 2004) postings were re-examined and coded to capture shifts in psychosocial benefits. The total number of postings for each poster, noted in the member profile, was used to determine the number of beginning and ending messages to be read. If beginning and ending affect could not be determined using 20% of the postings (10% beginning, 10% ending), coders were instructed to read additional beginning and ending postings until affect could be reliably determined. In cases where information was missing or not available, a "cannot tell" category was selected.

Data Preparation

Before conducting data analysis, it was necessary to prepare the data to address our research questions. To address RQ2, we transposed the data to determine whether a shift in affect toward the discussion board was detected. This was accomplished by, first, recoding beginning and ending affect toward the discussion board into numerical categories where negative affect=-1, neutral=0, and positive affect=1. Then, beginning affect was subtracted from the ending affect, which provided a continuous-level index of the shift in affect ranging from -2 to 2, where an extremely negative shift=-2, negative shift=-1, no shift=0, positive shift=1, and an extremely positive shift=2. The same procedure was also used to calculate shifts in attitude toward breast cancer.

To address RQ3, we computed amount of use. Based on the information obtained from the member profiles, two new variables were created: length of membership and participation frequency. Length of membership was calculated by counting the number of days between the date individuals had joined the discussion board and the ending date of our sampling period (i.e., October 17, 2004). For instance, N, a 61-year old breast cancer patient in Tennessee, joined the discussion board on October 1, 2002. Her length of membership was therefore calculated as 780 days.

Participation frequency was calculated by dividing the total number of postings by length of membership, calculated above. For instance, N posted a total of 1,240 postings during those 780 days. Thus her participation frequency was calculated as 1.59 (i.e., she posted around one and half times daily).

Results

RQ1: What is the profile of the typical woman who uses the online breast cancer community?

Results from the content analysis showed that a typical woman affected by breast cancer and who uses the online breast cancer community is 46 years of age (Range=17-67, SD=11). About one-third of the posters were mothers (26.8%) of one (8.7%), two (5.5%), three (11.8%) or even four (.8%) children. Among those who reported their marital status (52.5% of the overall sample), the majority (49.5%) were married, while 2% were divorced and 1% never married. As for occupation, 56.6% held professional occupations (managers, lawyers, educators, etc.), 17.2% were homemakers or retired, and 26.3% did not reveal their occupation.

As for geographic locale, 35 different states and three different countries (U.S., Canada, U.K.) were represented in our sample. Of those who identified their stage of breast cancer (11.1% of the overall sample), 1.2% were in Stage 1, 8.1% were in Stage 2, and 1.0% were in Stage 3. Additionally, 17.3% identified themselves as having a family history of breast cancer, whereas 4.7% said they had no family history.

Amount of use varied across posters. On average, 301 postings (Range=3-3013, SD=476) were made over the life span of membership to the discussion board (i.e., between the time a participant signed up to the end of the sampling period). We estimated that the average length of membership was about 247 days, although memberships could range from a "newbie" who signed up one and a half months earlier to a "veteran" who had been a member for more than three years (Range=44-1001, SD=212). We estimated that each poster, on average, posted 1.03 messages to the discussion board on a daily basis (Range=.02-5.72, SD=.97).

RQ2: What are the psychosocial benefits to using the online breast cancer community, and how do these benefits change over time?

The psychosocial benefits of participating in the online discussion board were identified using thematic analysis and were quantified with the content analysis. Below, we report the quantitative results of our content analysis and then support those results qualitatively with quotes from our thematic analysis. The psychosocial benefits that were identified included: information exchange and social support; improved affect toward the discussion board; greater optimism toward breast cancer; increased skill or ability to cope with the disease, improved mood, decreased psychological distress, and strategies to manage stress (see Table 2 for a summary of the quantitative results).

Information Exchange

Information exchange emerged as a psychosocial benefit in our thematic analysis, and included both giving and receiving information. Our content analysis revealed that more than half of the women (52%) benefited from getting information, while 39.4% benefited from providing information. The discussion board was structured around 22 topics, so the exchange of information tended to be organized around those topics. For instance, a predominant topic and exchange of information was treatments and medications (anti-depressants and anti-nausea medications), although most medical information that was exchanged was mainstream, as opposed to alternative, in nature. For instance, one member writes:

The perspective endorsed by [site name], in terms of the informational material available on this site, takes a pretty mainstream approach.... lots of information about conventional therapies like chemo, next to nothing about alternative/complementary treatments.

Other information included selecting and purchasing wigs and prostheses, what food to eat, and social issues such as relationships and divorce attorneys. Only a few postings dealt with issues related to monetary or insurance issues. One member writes:

On these boards, we talk a lot about dealing with the side-effects of our treatment, an important subject it is true as we deal with the side effects of such powerful drugs. We also talk about our fears of recurrence, and our battles as we deal with recurrences. But the subject of getting access to affordable treatment doesn't seem to come up much. And it's really so important.

Numerous members sought the advice of other, more knowledgeable members. For instance, L asked for advice about chemotherapy. She expressed a lot of concerns, including loss of hair, skin, and memory. In response to others' recommendations, she states: "I am just going to be starting chem because I had so many problems after my mastectomy in Sept., but your post was wonderful. It was an inspiration ..."

Another member sought advice about information contained in other breast cancer Web sites. She shares how she benefited from the information obtained in the discussion board. She writes:

Because of this post, I've gone and checked out all the sites I have bookmarked for BC stuff. I'm surprised at how many of them aren't up front about the % and where. I've really had my eyes opened. I'm being much more careful now!

Requested information was sometimes technical in nature. After receiving her biopsy report, one member writes:

I received my biopsy report today. I looked in Dr. Love's Breast Book, but I did not understand a few things (I'm not ready to read it yet!)
Results of biopsy were as follows:
Estrogen Recepter: 100%
Progesterone Receptor: 100%
Ki-67 (MIB-1) 5%
Her-2 Neu 2+
I really don't understand what the above means except that my bc is hormonally driven and that I have a positive biomarker. The HEr-2 Neu. Can anyone help me with this? Is it bad? (Well, I guess it's never good! LOL!).

A number of members quickly (within the same day) responded to the above member's request for information and walked her through the technical report step-by-step. However, our thematic analysis revealed that information was often related in an experiential way—based on what a member had done or experienced. For example, a member posts a question about a procedure that will be used on her mom. Another member talks about her experience with the same procedure and writes:

Hi H. If your mother does not have a port, please tell her to drink plenty of water before she goes. This will help make the vein easier to access. I made the mistake of not drinking anything other than my regular cup of coffee and the nurse had a hard time trying to insert the needle in my "flattened" vein. I hope everything goes well for her - I will be thinking about her.

Other times, information exchange was quite practical in nature. For instance, a member asked about a supportive bra or camisole, and another member responds: "How about a supportive camisole. Last year when I was doing rads I found some at Target (approx. $10) that were made of lycra. Maybe these would work?"

Sometimes the advice prompted members to take action with their disease. One member asked whether anyone lived in the same city where she lived and knew of a good physician. A number of members responded to her question and, in response to the information received she writes: "Thank you N. I took your advice and called [Medical Practitioner's Name]. I left a message for her. I appreciate your help!"

Other times information requests resulted in positive changes in the member's home life. After a mastectomy, one member was having a problem with her daughter. She complained about it to other members on the discussion board. The members offered the advice to "forgive and forget" and try to remain "positive." In response to the advice, the mom writes: "Thanks again! You ladies are always so wise! I have decided this is a chance to learn forgiveness better."

Social Support

A second psychosocial benefit for online group participation in our discussion board was social support, which included comments about the benefits of both giving and receiving social support. Results from our content analysis showed that 47.2% of women benefited from seeking social support, whereas 55.9% benefited from giving social support.

For instance, numerous women indicated that they enjoyed "being there" for one another and liked feeling they "could help others" affected by breast cancer. Other members stated that the exchange of social support made them "feel good" and said that it "was very empowering" (e.g., L, 687 days on discussion board). In supporting one member, T writes that she, in turn, has benefited. She writes: "I'm so sorry for you, but so inspired by your courageous attitude." Another member offers this simple supportive message in response to a posting about a successful treatment: "Doing the happy dance for you!!!!!!! WAHOOOOOOOOOO!!"

Our thematic analysis also revealed that social support typically occurs just before or after treatment, when the breast cancer patient is feeling scared, lonely or depressed. For example, two supportive members write:

"I'll keep my fingers and toes crossed that you won't be needing any [chemo]" (F, 802 days on discussion board).

"Good luck with everything. You are doing the right thing for you. You will be fine. I will keep you in my thoughts and prayers" (L, 687 days on discussion board).

In addition to offering emotional support, some members offered physical support that transcended the online world. In the following posting, V is going into surgery. Several of the members post supportive comments and, several days later, decide to join V in the hospital to support her during and after her surgery. One member writes:

V posted about a week ago that she hasn't been on the boards because she has been busy dealing with an aortic aneurysm. Tomorrow, she will go into the hospital for 2 days of invasive testing (which will be done under anesthesia) to determine the protocol for the upcoming surgery on the aneurysm. Please join me in wishing V good luck, good results and a speedy recovery! V, I will pray that all of our angels will be watching over you.

In anticipation of joining V, the member writes: "Oh! I was just thinking that we all should go with V. I'm sure F will let us borrow her beach bag. I'll bring the chocolates!" (L, 687 days on discussion board).

In a separate gathering, another member tells how much the physical support meant to her. She writes: "It was great meeting all of you yesterday. Thank you for inviting me. You were all very encouraging & I appreciate your putting up with me in person as well as online."

In relation to yet another gathering, another member writes: "IT'S ALMOST TOMORROW!!!!!!!!! Someone fast forward the clock so that it reads 1:09PM tomorrow because that is when my plane lands. I can't wait to be with all of you!!!!"

As members became more comfortable and knowledgeable about one another, they shared support for topics other than breast cancer. In response to one member's posting about the death of her father, a member writes: "I am so sorry for your loss. You and your family will be in my prayers today."

Another member, in response to news about a hectic week another member had to go through with her mom and husband being admitted in the hospital on the same day, writes:

I'm sorry you are having such a tough week. I'll keep you, your mom and your hubby in my thoughts and prayers. I like [member's name]'s idea of going to bed and pulling up the covers! I hope everyone is well on their way to recovery!

Another member reports that her dog is sick, and a supportive member writes: "Oh ((((hugs)))))) I'm sorry for you're having to face this. My dog was the best during treatment. I'd be heartbroken if he got sick."

In response to a co-worker problem, another member states:

Sorry to hear you're having this problem with a co-worker. You do have other options. That person has a boss. Go to that boss and tell them what's going on. If everyone in the company knows what you've been thru including the bosses then you have other avenues. This could be considered some sort of verbal/mental abuse and is not tolerated in a workplace. This needs to stop and stop immediately.

Improved Affect toward the Bulletin Board

Another psychosocial benefit was improved affect toward the bulletin board. Our content analysis showed that, when membership began, 11.8% of the members felt neutral toward the discussion board, whereas 66.2% felt positive toward the discussion board. Between the times that membership began, to the end of our sampling period, there was an improvement in affect toward the discussion board. At the end of our analysis, 6.3% felt neutral while 71.7% felt positive toward the discussion board. For instance, H, a 32-year old mom, makes the following comment in her latter postings: "I have found that this site has been undeniably the most helpful thing for me. . . . [I] am so glad I found this site!" A 56-year old member with seven grandchildren states in her latter postings: "All of you ladies are WONDERFUL! Bits of information and experience. Thanks from the bottom of my heart for the advice and help."

To further examine the shift in attitude toward the discussion board, we took the changes of affect toward the discussion board of each woman into consideration and found that only 7.1% of the women's affect decreased over time, while the majority kept the same affect they had in their beginning postings (78.8%), and 14.1% increased their affect toward the discussion board. This finding is evidenced in the postings of two members whose latter postings state:

"I want to thank everyone that has answered my questions and reassured me and I wish all of you the best of luck and health."

"This website is sooooo AWESOME! It's amazing how each of us can help one another simply because we've had experience with this horrible creature: BREAST CANCER. Hope everyone on this board does great!"

Increased Optimism toward Breast Cancer

Another psychosocial benefit of participating in the online discussion board related to the breast cancer itself. When members began posting online, about one-fifth (24.4%) expressed pessimism about their breast cancer, while 31.5% felt neutral, and 22% felt optimistic. At the end of our sampling period, the percentage of women who felt pessimistic about the beast cancer had dramatically decreased to 7.1%, and while some still felt neutral (11%), the majority of women felt optimistic (59.9%) about their disease.

This finding is supported by one member who, at the beginning of her postings, was quite negative about her breast cancer. She writes: "It is difficult to sleep after surgery. I had both breasts removed so there was no hope for me!"

After one year of participation, her postings about the breast cancer became more positive in tone. She writes:

Yes, I'm getting on with my life and having a great time doing it but it is a new life. …a lot of people were very encouraging about what a positive attitude I had despite what I must have gone through. (H, 408 days on discussion board)

A similar pattern emerged for another member, L, who was negative about breast cancer in her beginning posts, but over time became more positive. L writes:

I think the worst decision I ever made in my life was to have this year's mammogram. Ever since getting the results, my life has been in a shambles, not working, huge hole in my breast, infection, bowel blockage, feeling of worthlessness, etc. If I had not had that mammogram, I would have had at least one or two more years of happiness and productivity & my family would have been happy. Instead I'm a drain on them. I've never been so depressed or worthless in my life. I have nothing to do all day but indulge in self loathing. The organizations I was active in seem to have forgotten my existence, except for the occasional card. There is no more future to plan for. I'm just watching what I worked for all my life draining away. . .

In a posting two years later, L says:

Every now and then I fall into the "last time rabbit hole," i.e., today, I wondered if this would be the last time I would see the beautiful fall foliage, but then I remind myself that anybody can die at any moment. In a way (a very bizarre way) we are a bit luckier in that we have seen how mortal we are and, therefore, can live each moment to the fullest. (L, 687 days on discussion board)

Hence, while many women expressed pessimism about their disease when participation on the discussion board first began, as time progressed, many women improved their attitudes and became more optimistic about the disease. To offer a more dynamic view, we took the shift of affect toward breast cancer (reported above in the data preparation section) for each subject into consideration and found that only 7.1% of the patients' optimism decreased over time, while 31.3% kept the same optimism as they started with, and an encouraging 61.6% increased their optimism toward this disease.

This finding is supported with the following series of posts. A new member has joined the group and has expressed her fear and asked for help. She writes:

I'm scared to death here ladies! Please help me if you can... I've been crying all afternoon after I talked to my cardiologist's nurse. I go tomorrow to the PS for final info on my surgery 8/16 and just don't know what all to ask. Help here PLEASE!!!

Another member consoles the newbie and reassures her that the discussion board can help. She replies:

I am sorry to hear of your diagnosis. I am sooo glad you found this site though. You will find it filled with women who are willing to share their experiences and truly care about you. We are a very strong group of women with very definite opinions but also very respectful that not everyone will agree with us. Pretty much any decision you have to make others have made and are willing to share with you how and why they made their decision.

Four months later on the discussion board, after dozens of exchanges, the new member has apparently gained comfort from the interactions and is ready to face her disease. She writes:

Thanks for making me feel a lot more comfortable with all of this. It's a shame we have to go through all of this but with the help of each other we'll all get through it. I needed this reassurance. Thanks from the bottom of my heart!

Other Psychosocial Benefits

Other psychosocial benefits that emerged from our analysis included: increased skill or ability to cope (44.9%), improved mood (43.3%), decreased psychological distress (33.1%), and strategies to manage stress (29.9%). Due to space constraints, we offer just a few examples in support of the findings.

One member improved her ability to cope with the disease by learning to plan ahead—a tip she learned from other members of the discussion board. She writes:

The boards were a blessing to me. Not only could I reach out when I felt afraid…I learned to plan ahead - before my chemo day I would make a huge pot of chicken soup - filled with lots of veggies so that following my chemo, all I had to do was heat up the broth (if that's all I could eat that day) or eat the whole soup or just the cooked chicken and veggies. Also, I used paper plates/glasses - no dishes. (L, 687 days on discussion board)

Along the same lines, another member tells how she is now able to cope with life after a mastectomy. She states: "THANKS! again to all you wonderful and brave ladies. I think I can make it now with all your help and support."

With regard to improved mood, one member describes how the discussion board has saved her from her gloominess. She writes:

I had almost reached my limits when I learned of my disease. I couldn't eat, sleep or see straight. Although I am surrounded by loving family and friends, no one could possibly comprehend the storm in my brain, the all encompassing fear and anger that gripped my very essence and the overwhelming sadness in my soul…I still can't remember how I found [breast cancer site] but now I am happy to report that I am addicted. What a lifesaver this site has been for me. Because of the women I chat with daily, I no longer feel constant isolation, terror and gloom. Through our chats I have gained hope, strength, determination ..and plenty of laughs. (E, 107 days on discussion board)

Another member echoes this same benefit by saying:

Just last week I was feeling so down and decided to post on here and vent a little. After reading all the responses, it really lifted my spirits and I'm ready to jump back on the bandwagon and fight this thing till the bitter end.

As for decreased psychological distress, one member simply writes: "Thanks sooooo much. This is very helpful to help my mindset get better." Another member, 23-year old B, complains in an earlier posting about how much tension breast cancer has brought into her married life. She writes:

He [the husband] has no idea what is going on with me. I know I should be able to talk about this, but I am not exactly ready to be talking to him. Every time I think about it, let alone talk about it, I cry, and cry, and cry...its hard to get anything that resembles talking out and I am very frustrated about the situation, that what little talking we can do about it comes out like I am angry and pissed off.

After her concerns were addressed and consoled by others on the discussion board, she apparently made up her mind to deal with the situation. She later writes:

Thanks for all the support ladies. I do feel a bit better… I must admit, your answers have made me feel like I can talk and make this work for the both of us… I appreciate it more than you know. (B, 113 days on discussion board)

In other instances, as members agree that "the stressors from the illness are tremendous and can easily spill over to all areas of our lives" (P, 134 days on discussion board), a member shares how she learned to manage stress brought on by breast cancer since her participation on the discussion board. She writes:

I have never liked message boards or posting, but this is something different and it seems to have taken on a consciousness of its own. How amazing to find the faces and lives behind this. As everyone mentioned above, this website has helped me through one of the most difficult and stressful times of my life. It has been a source of strength and encouragement. I feel lucky I stumbled onto it. (D, 649 days on discussion board)

RQ3: Is there a relationship between amount of use and the psychosocial benefits identified in RQ2?

We also examined whether there was a relationship between amount of use and psychosocial benefits quantified by the content analysis. To address this issue, a series of Spearman's rho nonparametric correlations were conducted. Amount of use included the total number of postings, length of membership to the discussion board, and participation frequency.

Our results revealed a significant relationship between the total number of postings and information exchange (r=-.315, p=.002). The longer an individual was a member of the discussion board (r=-.290, p=.004) and the more frequently she posted (r=-.259, p=.010), the less likely she used the discussion board to seek information, and the more likely she provided information to other members (r=.277, p=.006; r=.278, p=.005; r=.283, p=.005).

A significant relationship also was found between posting frequency and improvement in mood. The more a woman posted to the discussion board, the greater improvement was shown in her mood (r=.212, p=.035). The findings further indicated a negative relationship between the frequency of posting and the benefit of learning strategies for managing stress (r=-.235, p=.019). It is possible that the psychosocial benefit of improved mood already serves as a way of releasing the stress so that members who post often do not need to seek the benefit of learning strategies for managing stress. This explanation is supported by a significant negative relationship between improved mood and strategies for managing stress (r=-.214, p=.034).

Discussion and Conclusions

The purpose of this research was to examine the psychosocial benefits of Internet community group participation for women with breast cancer. Specifically, we: 1) developed a profile of women with breast cancer who use an online discussion board; 2) identified psychosocial benefits of participation in the online discussion board and determined whether these benefits changed over time; and 3) examined whether there was a relationship between amount of use and psychosocial benefits of online group participation in the discussion board.

The findings from our content analysis revealed that the average woman who is directly affected by breast cancer and who uses the online breast cancer discussion board is 46, married, and holds a professional occupation. These findings parallel earlier studies, for example, Winefield et al. (2003) and Fogel et al. (2002). However, our findings revealed additional insights into women who use an online breast cancer discussion board; for instance, one-third of the women in our sample were mothers with one to four children. Additionally, the age range of women who use the online discussion board was broader (ages 17-67) than previous studies have shown (e.g., the study by Owen et al., 2004), as was the geographic locale of these women. Our results suggest that the discussion board not only draws individuals from diverse demographic backgrounds, but also brings together individuals from diverse geographic locales.

The findings of our thematic analysis revealed a number of psychosocial benefits of participating in an online breast cancer discussion board, including information exchange, social support, improved affect toward the discussion board, greater optimism toward breast cancer, increased skill or ability to cope with the disease, improved mood, decreased psychological distress, and strategies to manage stress. These findings add to the literature that has focused primarily on the information function rather than the social/community function of the Internet. From these findings, we can conclude that information exchange is just one benefit gained from Internet use, and there are other psychosocial benefits that women gain from participating in an online discussion board.

Additionally, by using women's "life stories," we were able to gain a clearer understanding of how they benefit from participation in an online discussion board. The combination of qualitative and quantitative methods enabled us to examine the results in a broader context and with richer details. For instance, past studies have shown that women use the Internet and online communities for emotional and factual information (e.g., Preece, 1999), and our qualitative findings support this. However, our findings also showed that the nature of that information may be more complex than previously suggested. In our study, information exchange ranged from practical to experiential, simple to technical, and personal to professional. These findings suggest that with the emergence of the Internet, women's informational needs may be more complex than previously thought. Alternatively, it may be that women's informational needs about breast cancer have always been complex but that the Internet now facilitates these needs by bringing them to the forefront of discussion among others with breast cancer.

Our findings also provide support for the efficacy of online breast cancer communities. The longer women belonged to the online discussion board and the more they participated, the more their stories reflected positive well-being. Not only did women's attitudes toward the discussion board become more positive over time, their attitudes toward their breast cancer also became more positive. These findings suggest that a single measure of well-being may not accurately assess whether or how individuals benefit from their Internet use. Since psychosocial well-being is dynamic and fluctuates with different life circumstances, a dynamic and on-going measure of well-being is needed to capture these nuances, such as the measures used here.

In addition, our findings revealed a positive relationship between posting frequency and psychosocial well-being. For instance, the more women posted to the online discussion board, the greater improvement was shown in their mood. To overcome limitations with past measures of Internet use, we attempted to provide a more holistic measure of how much individuals used the online discussion board. This was accomplished by calculating length of membership and participation frequency. Our findings showed positive outcomes to participating in online discussion boards and suggest that findings based on user and non-user comparisons, or simple yes/no measures of Internet use, may not necessarily generate valid conclusions about degree of Internet usage.

Additionally, a positive relationship was found between the total number of postings and information exchange in that women who were with the online communities longer and who posted comments more frequently were more likely to shift from being seekers of information to givers of information. These findings suggest that the needs of breast cancer patients and survivors are dynamic and may change over time. Alternatively, the more women posted and became comfortable with the group, the more confident they may have felt in providing information and support to other group members.

Implications

In addition to the aforementioned implications, our study has implications for the design of future studies that examine online communities. First, our findings suggest that well-being should be assessed over the lifespan of individuals' participation in online communities. Studies that use a single measure of well-being may not detect subtle changes over time in individual's mood, happiness, loneliness, or coping with breast cancer. Studies that use pre- and post-meaures of well-being may skew self reports of well-being depending on when the measures were taken. In our study, women expressed loneliness, sadness, fear, and denial just as they expressed comfort, happiness, hope, and joy. Thus, we assume that self reports of well-being would also differ depending on the timing of the meaures. By following women's life stories over time, we believe we gained a fairly accurate picture of each woman's struggle and, hence, feelings and affect toward breast cancer. An implication is that future studies should ask individuals to track their mood, feelings, affect, etc. in a diary or journal, as well as detailed measures of Internet use, to explore the long-term effects of group participation in online communities.

Our research also has a number of practical implications and suggests both opportunities and challenges for health practitioners who want to address the needs of women who use online breast cancer communities. First, our results suggest that women who used the online discussion board in our study are from not only diverse demographic backgrounds, but also diverse geographic locales. These findings suggest a potentially important outlet through which health practitioners can reach a broader base of breast cancer patients (e.g., by encouraging word of mouth among current members), as well as women who are at risk of breast cancer.

Health practitioners may also benefit from their own participation in online breast cancer communities to understand more fully the problems and struggles that women face with this disease. This information could then be utilized to plan better educative and preventive/supportive programs for breast cancer patients and survivors. For instance, information exchange emerged as a predominant psychosocial benefit of online community participation. The results of our thematic analysis revealed that information about treatments and medications (anti-depressants and anti-nausea medications) are exchanged fairly extensively. We saw a number of cases where women reported that they had used the information they learned from other members to inform their own decisions about breast cancer treatments, medications, and so on. Physicians may therefore spend time on an online breast cancer community to provide "expert" testimony and debunk myths about potential treatments that may help the speedy recovery of the breast cancer patient.

Our research further suggests that health practitioners might cater better to the needs of breast cancer patients by understanding the role and impact of a virtual community on patient well-being and how these benefits change over time. For instance, as suggested by our findings, the longer individuals use an online bulletin board, the more likely they will give (as oppose to seek) information or social support. This finding intimates that health practitioners might use the online community as a knowledge management tool and cultivate those "veterans" as rich resources for newly-diagnosed patients. This implication is reflected in the postings of one member who writes: "I think doctors should automatically hand out the website address when you are diagnosed. It would be a service" (D, 649 days on discussion board).

Further, the online communities seem not only rich in storing medical information and knowledge about breast cancer but also intimacy-related knowledge regarding this desease. These findings suggest that the vast amount of knowledge exchanged and stored in the online community should be fully explored, not only to foster the learning from the patients' end, but also from the health practitioners' viewpoint. For health practitioners, this could be posed as both challenges-since their authority and expertise will constantly be cross-validated by the community members online-and opportunities, since they can learn about the psychosocial needs of women with breast cancer, provided they are willing.

Limitations and Directions for Future Research

Despite the strengths of the present study, a number of limitations should be noted. First, our purpose was to use the life stories of women who were affected by breast cancer and who use an online discussion board to determine whether any psychosocial benefits were described in their postings. We believe our findings provide a fairly sophisticated account of a variety of psychosocial benefits, which were cross-validated with a content analysis and thematic analysis. However, these methods cannot establish causality, nor do we make any claims of causal relations. For instance, many factors influence women's attitudes toward breast cancer (e.g., successful treatment, positive news about remission, etc.), which could not be accounted for in the present study. In attempting to establish the efficacy of an online breast cancer discussion board, we attempted to count only those comments that seemed to attribute a shift in attitude to the online discussion board. However, it is possible that members who posted more messages were also better able to convey a wider range of affect. Thus, although our findings cannot establish causality, we can at least conclude that women found the online discussion board helpful, even empowering, in dealing with their disease. Future studies can attempt to establish causality by conducting the appropriate methods and analyses.

Missing data may pose another limitation. Although member profiles and individual postings provided important demographic and geographic details, members are not required to provide all details about themselves and, as a result, some of the demographic and geographic data were missing, despite our attempts to fill in missing gaps of information by reading individual postings. A related issue is the structure of the online community examined here. The discussion board was organized around 22 topics, selected by the site sponsor. Although the topics were extensive, their organization may have imposed a limitation on topics not represented but that members would like to discuss. To overcome these limitations, additional studies can cross-validate these findings in this and other online communities that may be structured differently.

A related issue is the manner in which well-being was determined. In this study, we used a thematic analysis to identify different psychosocial benefits, followed by a content analysis that counted the prevalence of those benefits. We believe that this combination of quantitative and qualitative methods is unique and one of the strengths of the present study. However, future studies can conduct surveys or perhaps experiments to overcome limitations that are inherent in participant-observation methods, and collect direct self-reports of psychosocial well-being.

Last, although we are confident in the scientific rigor of our sampling technique, future studies might examine alternative sampling techniques within virtual communities. The archiving system in the community studied here was complex and highly dynamic. To preserve the quality and context of our postings, they were cut and pasted into a database. Studies that use larger samples of 100,000 messages or more may find this a difficult or even impossible task. Thus, to ensure the scientific integrity of research and advance theoretical knowledge, future studies are needed to address methodological issues that confront research on virtual communities.

Conclusion

As the communal aspect of the Internet continues to grow, it will be important to understand who uses online communities and what psychosocial benefits individuals gain from online group participation. Our findings suggest that women who actively participate in an online breast cancer bulletin board can gain a variety of psychosocial benefits. Additionally, our research uses a unique approach to participant-observation that included a combination of quantiative and qualitative methods. The life stories of these 100 women provided rich details and a context within which to understand the quantitative findings of the content analysis. However, more research is needed to establish the causal connection between the online discussion board and psychosocial well-being.

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About the Authors

Shelly Rodgers is Assistant Professor in the Department of Advertising at the University of Missouri-Columbia. Her research interests include health communication, information processing, online technology, and psychosocial well-being.
Address: Department of Advertising, University of Missouri-Columbia, 208 Neff Hall, Columbia, MO 65211 USA

Qimei Chen is Assistant Professor of Marketing in the College of Business Administration at the University of Hawaii. Her research is in the areas of social marketing, online technology, website satisfaction, and psychosocial well-being.
Address: College of Business Administration, University of Hawaii at Manoa, 2404 Maile Way, C303, Honolulu, HI 96822 USA