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Patient Relat Outcome Meas. 2012;3:51-8. doi: 10.2147/PROM.S36034. Epub 2012 Oct 4.

A qualitative assessment of an online support community for ovarian cancer patients.

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1
College of Technology, Eastern Michigan University, Ypsilanti, MI, USA.

Abstract

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:

community; disease management; online discussion forums; self-management; support; trust

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