title: A content analysis of cognitive and affective uses of patient support groups for rare and uncommon vascular diseases: comparisons of may thurner, thoracic outlet, and superior mesenteric artery syndrome.
abstract: Rare disease patients are the predominant group of patients who are now connecting online to patient support groups, yet research on their uses of support groups has received little attention. This is a content analysis of three vascular diseases of differing degrees of rarity. Wall posts from Facebook patient support groups for May Thurner syndrome, thoracic outlet syndrome, and superior mesenteric artery syndrome were analyzed over a period of two years. Using Uses and Gratifications as the theoretical framework, the study purpose was to assess how variations in health condition and rarity of condition affect online support group user needs. Results indicated common main cognitive and affective uses across conditions, indicating a consistent pattern of needs communicated by all patients. However, there were nuanced differences in subcategories of cognitive and affective uses between the most and least rare disorders, which inform areas for tailored support mechanisms. Additionally, these vascular patients used their respective support groups primarily for cognitive reasons, especially for the rarest conditions, which informs of basic medical informational needs these patients face related to tests, treatment, surgery, and diagnoses.
authors.affiliation: a School of Journalism , Indiana University.
authors.forename: Kimberly K
authors.initials: KK
authors.lastname: Walker
mesh_terms: D000339:Affect; D003071:Cognition; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D062108:May-Thurner Syndrome / Q000523:psychology; D011582:Psychological Theory; D035583:Rare Diseases / Q000523:psychology*; D012657:Self-Help Groups; D013478:Superior Mesenteric Artery Syndrome / Q000523:psychology; D013901:Thoracic Outlet Syndrome / Q000523:psychology; D014652:Vascular Diseases / Q000523:psychology*