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Sources of Knowledge, Family and Peer Support, Disclosure, and Posting on Social Media Platforms Among Patients with Systemic Autoimmune Rheumatic Diseases (SARDs): A Survey-Based Cross-Sectional Study

Year: 2026

Type: article

Abstract: Systemic autoimmune rheumatic diseases (SARDs), like rheumatoid arthritis and systemic lupus erythematosus, impose significant burdens on patients. This cross-sectional survey explores knowledge sources about SARDs, emotional and practical support from family and peers, and willingness to disclose their condition publicly, particularly through social media, among a Middle Eastern population. A descriptive, cross-sectional study was conducted at the University Hospital (Abha), the University Hospital (Makkah), and Alhabib Private Hospital (Jeddah), involving 301 adults aged 18 to 50 with SARDs. A structured questionnaire assessed sociodemographic data, clinical information, support systems, and disclosure practices. Data were analyzed using SPSS v25.0 ( P < .05). In total, 84.7% of participants received disease information from their treating physicians, while 50.2% turned to social media. Over half (55.1%) felt supported by families, and 49.5% noted workplace cooperation. However, 32.2% cited fear of stigma, and 14.6% felt like a burden as barriers to disclosure. Enhancing patient education, expanding support groups, and raising awareness about autoimmune diseases are vital for improving social support and encouraging disclosure without stigma.

Source: Journal of Patient Experience

DOI: 10.1177/23743735261415662