The Role of Online Support Communities

2009/01/01 by Shereene Z. Idriss, Joseph C. Kvedar, Alice J. Watson · 25 citations
Health Professions · Immunology and Microbiology · Medicine · Nursing · Psychology · #Demographics #Demography #Dermatological diseases and infestations #Embarrassment #Family medicine #Gerontology #Health Literacy and Information Accessibility #Medicine #Nursing #Psoriasis #Psoriasis: Treatment and Pathogenesis #Psychology #Quality of life (healthcare) #Social psychology #Social support

paper · doi:10.1001/archdermatol.2008.529

openalex publication_date 2009/01/01 · openalex created_date 2016/06/24 · openalex updated_date 2026/07/25

Abstract

OBJECTIVE: To determine the demographics, usage patterns, attitudes, and experiences of online support site users. DESIGN: Online survey. Patients A total of 260 subjects recruited from 5 online psoriasis support groups. MAIN OUTCOME MEASURES: An exploratory analysis was performed to determine demographic and disease characteristics of online support site users. Perceived benefits were also documented. RESULTS: The mean (SD) age of respondents was 40.1 (11.5) years (range, 18-75 years), most (75.7%) were white, female (60.4%), and college educated (84.3%). Key factors associated with use of online support sites included availability of resources (95.3%), convenience (94.0%), access to good advice (91.0%), and the lack of embarrassment when dealing with personal issues (90.8%). The most common activities were posting messages (65.0%) and searching for information (63.1%). Nearly half of all respondents perceived improvements in their quality of life (49.5%) and psoriasis severity (41.0%) since joining the site. Intensity of participation in online support activities was associated with improved quality of life (P = .002), but not with improvements in psoriasis severity. CONCLUSIONS: Our data demonstrate that psoriasis virtual communities offer users both a valuable educational resource and a source of psychological and social support. Such benefits could be further enhanced by physician engagement within these communities.

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