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Keywords

 

Authors

  1. Mendelson, Cindy RN, PhD

Abstract

Systemic lupus erythematosus is a chronic autoimmune illness that usually affects women during their childbearing years. Women with lupus must learn to live with a variety of unpredictable symptoms, making a consistent source of support and information important for day-to-day illness management. For many women, the Internet fills this need. This article reports the findings of a qualitative study of 3 Internet listservs that provide support and information to the community of people living with lupus. Five thematic areas that describe the type of information and support available to listserv participants are described and the benefits of listserv participation are discussed.

 

SYSTEMIC lupus erythematosus is a chronic autoimmune illness that predominantly affects women during their childbearing years. It tends to wax and wane, with individuals experiencing unpredictable periods of flare and remission. The manifestations of lupus vary from person to person; some patients are minimally affected, with symptoms limited to inflammation of the joints and skin, whereas others may have life-threatening involvement of major organs. 1 Although there are a variety of symptoms and experiences common to lupus, each person's illness experience is not only unique, but frequently varies over time. 2

 

Women with lupus must learn to live with a variety of unpredictable symptoms, making a consistent source of support and information a key component of day-to-day illness management. For many women, the Internet fills this need. The purpose of this article is to describe the types of support available to women with lupus on a sample of Internet listservs. It reports the findings of a review of message postings to 3 Internet listservs that address the needs of the community of individuals affected by lupus.