Rating

	My Rating: 0 ratings 5 stars (0) 4 stars (0) 3 stars (0) 2 stars (0) 1 stars (0)

Email

	Email this page to a friend Friend's Email: Your Name: Your Email: Enter the code shown: Submitting Send Email

Results

The structure of community in an ovarian cancer online community

One of the first patterns that emerged in observation of the discussions between users in the forum studied was the structure of communication. Threads were created when there was something that was desired from others in the community. Users asked fellow community members questions as a way to spur on conversation. Users did not commonly begin a thread to share information or to encourage relatedness amongst other community members. In the period studied, there appeared to be only a few examples of users beginning threads not looking for something from others, and these threads did not receive participation from other users.

Additionally, thread size appeared rather bimodal, in that a thread either had zero to two posts on it or had multiple posts of seven to ten quite commonly. Threads where a user was requesting technical information were usually answered by users who had high post counts. A high post count means that the user has participated in many discussions. Concerning frequent posters, their participation in a thread where technical information was requested would usually be the concluding post in the thread. Posts made by these users regarding their education and professional background suggested a varying degree of experience in medicine from none to being a professional practitioner (Figure 1). It seems plausible that there was an assumption of authority among posters regarding users who frequently participated.

Figure 1 Qualitative data analysis for information-provider role

A different observation was made for threads regarding emotional support issues. Participants who frequently posted in these threads participated in a way that offered empathy and catharsis for both themselves and the person who started the thread. The original poster of the thread framed the thread as a question to be answered. Other members of the community commonly participated with well wishes or sharing their own stories and experiences. Threads concerning a technical or educational issue received a simple clinical answer. However, threads regarding support became an opportunity for soul cleansing and emotional discussion (Table 2).

Table 2 Structure of support types in an ovarian cancer support forum

Roles of users in an ovarian cancer online community

The roles of users in the forum emerged from the qualitative analysis. As discussed previously, threads would commonly begin with a question or some sort of request for explanation regarding treatment, care, or living with the disease or a loved one with the disease. People who began threads were classified as information seekers. Participants in threads then responded with either information, an anecdote, or emotional support of some kind. These people were information providers. The role assumed by those who participated in threads rarely deviated from that of being an information provider (Table 3). Information providers also appeared to get something out of participation in threads, as it allowed them to tell their story or be a part of the community. They did not expressly seek anything from other users.

Table 3 Roles of posters in an ovarian cancer support forum

Specific subgroups/categories were observed among information providers. As discussed previously, there were a few posters who had significantly higher post counts than other users. These posters are referred to as regulars, as they are people who regularly participated in the discussion. Nonregular posters did not frequently participate as information providers. Regulars participated in both technical and support threads. Their participation in technical threads commonly resulted in the end of the discussion. However, their participation in support threads did not end the discussion. Regulars also cleansed the forum if they sensed that someone gave biased information. As an example, in one specific event, a regular noted that a poster was trying to push a product as a salesperson. This person ceased posting after being exposed.

Reasons for participation in an ovarian cancer online community

Detailed assessment of roles that individuals played in the online community and analysis of their interactions demonstrated that specif ic features are associated with this community. Both information seekers (Figure 1) and information providers (Figure 2) shared that they sought or delivered self-management assistance, support, and trust (Figure 3). Self-management involves patient education and practice of care by the patient. The difference between traditional patient education and self-management education is that while traditional patient education offers information and technical skills, self-management education also teaches problem-solving skills.²⁹ Technical information requested by information seekers could be categorized into two segments: trust and self-management.

Figure 2 Qualitative  data analysis for information-seeker role

Patients concerned about such things as their doctors “doing the sit and wait” or waiting to see the progression of the disease before moving forward with treatment were commonplace. These concerns in turn highlighted trust issues. Further, patients and their loved ones asked about what test results meant as a way to determine whether their health-care providers were being honest with them. It was found that the online forum was often used by patients when trust in a physician after a visit was low or when an imminent or recent visit increased their anxiety. This is consistent with findings of other research studies.³⁰

Self-management was a very frequent occurrence in this forum. Information seekers commonly asked questions regarding quality of life and lifestyle management, such as diet and activities as well as self-care during and after treatment, as well as the effects of treatment on their lifestyle. Information providers responded with brief clinical answers. Information providers would provide personal and disease-related information as a way to ensure the most accurate answer. If enough information was not given with a query, the thread was either ignored or the information seeker was asked additional/follow-up questions by an information provider. Self-management threads were short in nature. They usually ended with the participation of a regular giving advice. It was a somewhat rare occurrence to have two or more regulars posting in the same self-management thread. It seemed that this was a showing of respect among regulars for their work in the community.

Figure 3 Model of participation in the ovarian cancer support forum

Support was quite different from the technical nature of threads where trust and self-management responses were sought. Support elicited emotional responses from information providers. The distinction between information seeker and information provider seemed to blur in a few of these threads. Common occurrences in these threads were that they began with an information seeker venting frustration while looking for empathy from the community. Responses by community members included recollections of personal experiences, expressions of anxiety or empathy, or praise or reinforcement for the information seeker. In some instances, the information seeker would rejoin the thread and offer the same things to the information provider.

Process of communication in an ovarian cancer online community

While information seekers began a thread based on trust, support, or self-management, the basis for communication in this community was the sharing of technical or emotional  knowledge or experience. Technical knowledge and experience represented self-management. Emotional knowledge and experience represented support. Trust appeared to be somewhere in the middle. Technical knowledge and experience appeared not to be as salient a topic as emotional knowledge and experience. However, there appeared to be a desire to share technical knowledge and experience among a limited number of regular information providers. In a self- management thread, there were a few regulars who frequently participated. These regular information providers often used the post also as a way to share emotional knowledge and experience. In a thread where trust was the basis for discussion, a similar phenomenon was observed. However, information- provider responses were more emotional knowledge–based and experience-centric than in self-management threads. Threads where an information seeker was looking for support commonly received emotional knowledge and experience in response from information providers (Figure 4).

Figure 4 Process of communication in the ovarian cancer support forum

Descriptive Data Analysis

Descriptive statistical analysis showed that there was consistency in frequencies among information seekers and information providers concerning trust. Trust was the least frequently discussed topic on the forum. Information providers discussed trust in 7.2% of their posts and information seekers discussed it in 7.6% of their posts. Information providers discussed self-management 46% of the time. Information seekers discussed self-management 70.9% of the time. A large difference existed between information-provider participation and information-seeker participation  in support-related discussions. Only 17 posts were made by information seekers on the support topic, but 65 posts were made by information providers on this topic. This suggested that information seekers and information providers might have different reasons for participating in this forum. It was found that information seekers participated prominently in self-management topics, whereas information providers par- ticipated prominently in support and self-management topics. Detailed descriptive data analysis is presented in Table 4.

Table 4 Descriptive data analysis of posts made under specific topics

Continued on next page >