Stroke recovery: what are people talking about on Twitter?

Problem Stroke survivors and their carers have benefited from advances in treatments and improved support with recovery because of an expanding evidence base, yet certain areas of stroke care require further attention from researchers and funding bodies. A Stroke Priority Setting Partnership is currently being conducted in the UK by The Stroke Association using a process developed by The James Lind Alliance that involves surveys and workshops with stroke survivors, stroke carers and health professionals. Another valuable source of information about issues that are important to stroke survivors and their carers is Twitter, one of the largest social media platforms globally. Approach We aimed to ascertain common topics of discussion in relation to stroke recovery on Twitter amongst stroke survivors, their carers, and the general public. An electronic search of the social media website was performed to analyse the content of two major stroke discussion tags: #strokesurvivor and #strokerecovery. Tweets made by stroke survivors and their carers or other interested members of the public were included and those made by health professionals or organisations (e.g. charities or health care providers) were excluded. All tweets were fully anonymised and edited where necessary to omit any identifying information. The remaining content of each tweet was analysed thematically, with tweets being coded by their content and sentiment to identify trends in discussion. Tweets were collected using an open-source extension for the internet browser Chrome and analysed using the qualitative research software NVIVO. Tweets spanning 5 weeks over the course of January to February 2021 were analysed. Findings Common themes uncovered included: the burden of stroke treatments; financial burden after a stroke; difficulties in returning to employment; managing risk of stroke recurrence; accessing resources about stroke recovery; accessing covid-19 vaccination; monitoring of stroke recovery progress, fundraising and generating awareness. A large portion of the dataset included tweets in which external links and media were shared. Stroke survivors commonly shared personal recovery stories and motivational statements including functional improvements and milestones. A large portion of the data set was made up by the sharing of resources among stroke survivors, ranging from links to educational materials to rehabilitation services and motivational content. Consequences Our findings can inform researchers and the organisations that fund stroke research about the topics commonly discussed by stroke survivors, their carers and the general public in relation to stroke recovery on social media. This can aid the prioritisation of research topics that require funding.