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New Study Examines How Online Communities Offer Ovarian Cancer Patients Advice and Support

By Preetinder Singh Gill and Billy Whisnant

College of Technology, Eastern Michigan University, Ypsilanti, MI, USA

Originally published by DovePress, New Zealand

Background: A diagnosis of ovarian cancer can have detrimental effects on afflicted patients and their families. Therefore, it is important to understand the role online communities play in improving the quality of life of those affected by the disease.

Purpose: The aim of this research study is to illustrate the role that online communities play in helping patients and their families to deal with ovarian cancer.

Methods: Data were collected from an online ovarian cancer forum hosted by MedHelp.org in the form of transcripts of participant discussions. No identifying information about participants was collected. Grounded theory, a qualitative research method, was employed to develop a theory by analyzing the data. The aim of the analysis was to explore the role this forum played in ovarian cancer disease management.

Results: Data analysis helped to determine participant roles and behaviors. The results suggested that an information seeker–information provider communication process existed among users of the forum observed. Participants in the online forum shared both technical and emotional knowledge and experience in order to achieve self-management of the disease while building trust and support.

Conclusions: This study concluded that online discussion forums can play a crucial and indispensable role in dealing with diseases such as ovarian cancer, for which limited treatment options exist. Health educators can leverage online discussion forums to promote lifestyle choices and disseminate information about treatment and testing, while getting active feedback from the audience.

Keywords: online discussion forums, community, disease management, self-management, trust, support

Introduction

Recent projections from the American Cancer Society state that in the United States 22,280 women will be diagnosed with ovarian cancer and 15,500 women will die from the disease in 2012.¹ In the lifetime of a woman, her risk of developing invasive ovarian cancer is 1.41%2 and the risk of dying from invasive ovarian cancer is 1.05%, with an overall 5-year survival rate of 46%. Specific rates of survival depend on the stage the cancer is in when a physician makes the diagnosis.²

In 2009, a study of stage IIIC epithelial ovarian cancer patients found that the mean cost of treatment was US$211,940 over the course of the treatment.3 The survival rate was found to be 30%, and only 9% of the patients in the study were ovarian cancer– free after 5 years.³  It was also found that the cost of treatment ranged from $85,760 to $555,280.3 Furthermore, the average cost of treatment of epithelial ovarian cancer has increased fourfold over a period of 20 years.⁴

Decruyenaere et al⁵ and Lancastle et al⁶ highlighted that ovarian cancer patients undergo emotional distress and experience erosion in the quality of their lives. Northouse et al⁷ noted that families and loved ones of ovarian cancer patients also undergo psychological and physiological issues. Therefore, it is imperative to develop novel solutions to care for people directly or indirectly affected by ovarian cancer.

The risk of developing ovarian cancer increases with age.^8–10 The rising age of the overall population underscores the need to provide efficient and effective support to women afflicted by the disease. Considering the urgency for care and the costs associated with this disease, it is interesting to note that Korstjens et al found that group-based self-management played a positive role in improving the quality of life of cancer survivors.¹¹

Online discussion forums

Online discussion forums are websites that allow users to make contributions to discussions. The discussions in these forums focus on a large array of topics. A Google search performed on May 10, 2012 for the string “online discussion forums” returned over 40 million results. Wells and Sevilla maintained that an online discussion forum is where questions can be posted for informal answers and discussion.¹² Online discussion forums can become a vibrant source of ideas and sharing. Forums can be created using sophisticated software, often available for free.¹³

Forum sites are usually run and controlled by administrators and/or moderators. The administrators and/or moderators can check all contributions to the forums, and they can ban members or create areas for private/nonpublic areas.¹³ Furthermore, Shaul asserted that online forums could serve as a socially constructive learning tool.¹⁴  He classified online forums as into three categories: social/opinion forums, general discussion forums, and topic-specific forums. Besides these three categories, Gordon also added company/product-specific forums to the list of categories.¹⁵  Beuchot and Bullen¹⁶  and Chalkitia and Sigala¹⁷  maintained that online forums facilitate in collective knowledge-building and knowledge management.

Multiple studies have been conducted on the use of health care–related online discussion forums as a method of providing patient support. Adler and Adler identified that online discussion forums can go beyond the boundaries of simple information discovery and can be a source of support for individuals.¹⁸ As an example, women using an online discussion forum for menopausal support were found to be using the forum for redefining self, laughing at suffering, differences within sameness, and talking to the wall.¹⁹ A study of a self-harm support forum found that forums develop theirown hierarchies.20 A forum with less moderation will take on a flatter hierarchy, where users depend on one another to form behavioral norms, and when individuals on a forum post in a way that is counter to the culture of the forum, other users will correct the behavior.²⁰ Work concerning the use of the Internet in the treatment of social phobias has determined that significant improvements can be made whether or not the support is provided by a professional therapist.²¹

A review of the literature conducted by Barak et al determined that the use of online support groups is effective as a source of support for an individual with a specific condition.²² However, the support group can have limited to no influence on the treatment of the condition. The use of computer- mediated communication can also help to overcome the many challenges presented by specific medical conditions.²² The review showed that the interactions of community members in an online support forum built around ovarian cancer have not been adequately studied. Therefore, this study was designed to observe the interactions of the users of an ovarian cancer online support forum as a way to develop theories concerning the use of online support communities.

Research questions

The purpose of this study was to gain an insight of the online forums that have been built around ovarian cancer. Research questions addressed by this study are:

1.  What is the nature of the structure of this community?

2.  What roles do different users play?

3.  For what reasons do individuals participate in these forums?

4.  What is the process that underlies communication in this community?

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