Stroke survivors and their families receive information and support on an individual basis from an online forum: descriptive analysis of a population of 2348 patients and qualitative study of a sample of participants

OBJECTIVE: To describe the characteristics of participants of an online stroke forum, their reasons for posting in the forum and whether responses addressed users' needs. METHODS: Descriptive analysis of the population of 2004–2011 archives of Talkstroke, the online forum of the Stroke Association, and comparison with patients admitted to hospital with stroke (Sentinel Stroke National Audit Programme, SSNAP). Thematic analysis of posts from a sample of 59 participants representative of age at stroke and sex. SETTINGS: UK. MAIN OUTCOME MEASURES: Characteristics of participants: age, sex, survivor versus patient by third party, side of stroke (R, L), social class; (from the sample of 59 participants): level of disability, stroke type, classification of users' intents for writing a post in the forum, quantification of needs addressed by the forum, topics of discussion. PARTICIPANTS: 2348 participants (957 stroke survivors, 1391 patients with stroke talked about by third party). RESULTS: Patients of both sexes and from a wide range of ages at stroke (0 to 95 years) and degrees of disability were represented in the forum, although younger than the UK stroke population (mean age 52 years vs 77 years in SSNAP). Analysis of 841 posts showed that the main users' intents for writing in the forum were requests/offers of information and support (58%) and sharing own experiences of stroke (35%). Most information needs were around stroke-related physical impairments, understanding the cause of stroke and the potential for recovery. Up to 95% of the users' intents were met by the replies received. CONCLUSIONS: Patients' needs expressed in the online forum confirm and widen the evidence from traditional research studies, showing that such forums are a potential resource for studying needs in this population. The forum provided an opportunity for patients and families to give and receive advice and social support.