A study has been published in BMJ Open that seeks to describe the characteristics of participants of an online stroke forum, their reasons for posting in the forum and whether responses addressed users’ needs.
It comprises a 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).
The analysis found that 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%).
Twenty-one main topics were identified from the 841 posts.
Stroke-related impairments, finding out the cause of the stroke and the potential for recovery were the main topics discussed. Healthcare professionals and medicines were important participants of conversations as well as fear and likelihood of stroke recurrence.
The lack of understanding of stroke effects, especially the invisible effects, such as fatigue, emotional lability, impaired self-confidence, and memory and cognitive problems, was the topic generating the highest number of posts/user.
Nearly half of participants wrote posts about sources of information and support they had found helpful.
Fatigue, fear of stroke recurrence and emotional lability were reported in multiple posts by the same users, as well as the importance of a positive attitude during recovery.
The forum itself was often mentioned and described as a key source of information, support, help but also hope and inspiration.
Up to 95% of the users’ intents were met by the replies received, and the reseachers conclude that the forum provided an opportunity for patients and families to give and receive advice and social support.
The full study can be read here.
BMJ Open 2016;6:e010501 doi:10.1136/bmjopen-2015-010501
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
Anna De Simoni, Andrew Shanks, Chantal Balasooriya-Smeekens, Jonathan Mant