Sharing experiences and social support requests in an Internet forum for patients with systemic lupus erythematosus

Abstract

Internet forums represent a useful but understudied resource to understand psychosocial aspects of living with systemic lupus erythematosus. This study was aimed to describe the demand/supply of social support through the Internet in relation with the description of personal illness experiences. All the posts (118) from an Italian forum for systemic lupus erythematosus patients were collected and analyzed combining qualitative content analysis with statistical textual analysis. The results showed different purposes for posts: starting new relationships, seeking information, receiving emotional support, and giving a contribution. Lexical analysis identified three ways of describing patients’ experiences. Discussion focuses on the relationship between the requested/offered support and systemic lupus erythematosus experiences.

Keywords

chronic illness Internet qualitative research systemic lupus erythematosus social support

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