Abstract

Women with lupus must learn to live with a variety of unpredictable symptoms, making a consistent source of support and information a key component for daily illness management. This study reports the findings of a review of message postings to three Internet listservs that address the needs of the community of individuals affected by lupus. Some common themes included: 1. Exchanging advice and information; 2. Living with illness; 3. Life goes on; 4. Life in cyberspace; and 5. Being there for each other. The Internet may be an important source for support and information for people with lupus and other conditions that limit mobility, and may therefore provide a suitable alternative to faceto- face support groups. However, participants must be cautioned that online information may not always be correct. Background: Lupus is the second most common autoimmune disease-affecting women during their childbearing years, with an estimated prevalence of 122 cases per 100,000. Women with lupus must learn to live with a variety of unpredictable symptoms (e.g., periods of flare and remission of inflammation of joints and skin), making a consistent source of support and information a key component for daily illness management. One of the bigger issues is that lupus is poorly understood; a listserve/the Internet may help to function as a self-help group for an online community. This study reports the findings of an analysis and review of message postings to three Internet listservs that address the needs of the community of individuals affected by lupus. Interest and use of web-based technologies is still in its infancy and needs to be explored.

Methods: Three Internet listservs related to lupus were each followed for a three-month period. The postings of each listserv were analyzed for content and themes. The analysis was compared with findings in the literature.

Findings: While each listserv exhibited an unique "personality", five broad themes were identified from the postings to the listservs. These included: 1. Exchanging advice and information - sharing of information related to lupus; 2. Living with illness - discussions around how their lives had been affected by lupus; 3. Life goes on - the events that occur despite lupus; 4. Life in cyberspace - information and discussion about operating in an "online" environment; and 5. Being there for each other - support in the traditional sense. The listservs also differed in terms of the type of social support and personal support provided by the participants.

Conclusions: The Internet is becoming an important source of information on health and illness. Use of a listserv countered some of the barriers related to time, perceived need, and identifying support group members. The flexibility of an asynchronous listserv (that is, similar to email and not in "realtime") allows participants to "check-in" at convenient times and from a variety of geographic areas. The Internet may be an important source for support and information for people with lupus. However, participants must be cautioned that information found online may not always be correct. Online support may be an effective means of addressing some of the social support needs of other patients and caregivers who may have difficulty with mobility, and therefore provide a suitable alternative to face-to-face support groups.

Reference: Mendelson C. "Gentle hugs. "Internet listservs as sources of support for women with lupus". Advances in Nursing Science, 2003; 26, 299-306.