Stroke survivors and their families receive information and support on an individual basis from an online forum: descriptive analysis of a population of 2,348 patients and qualitative study of a sample of participants
De, Simoni Anna
BMJ Publishing Group Ltd.
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De, S. A., Shanks, A., Balasooriya-Smeekens, C., & Mant, J. (2016). Stroke survivors and their families receive information and support on an individual basis from an online forum: descriptive analysis of a population of 2,348 patients and qualitative study of a sample of participants. BMJ Open, 6 (e010501)https://doi.org/10.1136/bmjopen-2015-010501
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 vs patient by 3rd 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: 2,348 participants (957 stroke survivors, 1,391 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. Strengths and limitations of this study: • This is the first study to investigate the characteristics of people with stroke who take part in an online forum, the use they make of it in relation to their condition, and to show the potential value of the emotional and informational support that online forums provide to patients with stroke and their carers. • The strength of the study lays in the descriptive analysis of the entire population of 2,348 forum participants, underpinning the validity of results obtained from analysing the forum archives. • Forum participants were younger compared with the population of patients with stroke. • The analysis of the forum was limited by the time users were active in the forum, by the form moderation process, and by the lack of assessment of the authenticity of the forum content.
This study was funded by a NIHR Academic Clinical Lectureship to Anna De Simoni. The Evelyn Trust funded Chantal Balasooriya-Smeekens’s work.
External DOI: https://doi.org/10.1136/bmjopen-2015-010501
This record's URL: https://www.repository.cam.ac.uk/handle/1810/253820
Attribution 2.0 UK: England & Wales, Creative Commons Attribution License 2.0 UK
Licence URL: http://creativecommons.org/licenses/by/2.0/uk/