Assessing the impact of upper limb disability following stroke: a qualitative enquiry using internet-based personal accounts of stroke survivors

PURPOSE: Upper limb disability following stroke may have multiple effects on the individual. Existing assessment instruments tend to focus on impairment and function and may miss other changes that are personally important. This study aimed to identify personally significant impacts of upper limb disability following stroke. METHODS: Accounts by stroke survivors, in the form of web-based diaries (blogs) and stories, were sought using a blog search engine and in stroke-related web-sites. Thematic analysis using the World Health Organisation's International Classification of Functioning Disability and Health (ICF) was used to identify personal impacts of upper limb disability following stroke. RESULTS: Ninety-nine sources from at least four countries were analysed. Many impacts were classifiable using the ICF, but a number of additional themes emerged, including emotional, cognitive and behavioural changes. Blogs and other web-based accounts were easily accessible and rich sources of data, although using them raised several methodological issues, including potential sample bias. CONCLUSIONS: A range of impacts was identified, some of which (such as use of information technology and alienation from the upper limb) are not addressed in current assessment instruments. They should be considered in post-stroke assessments. Blogs may help in the development of more comprehensive assessments. IMPLICATIONS FOR REHABILITATION: A comprehensive assessment of the upper limb following stroke should include the impact of upper limb problems on social participation, as well as associated emotional, cognitive and behavioural changes. Using personalised assessment instruments alongside standardised measures may help ensure that these broader domains are considered in discussions between clinicians and patients. Rehabilitation researchers should investigate whether and how these domains could be addressed and operationalised in standard upper limb assessment instruments.