Social and practical strategies described by people living at home with stroke

People with stroke are often referred to in negative terms. The phrase 'stroke victim' suggests that they are regarded as passive and deserving of pity, whilst 'the burden of care' implicates them negatively as an encumbrance to others. Much of the literature focuses on how stroke devastates peoples' lives, again casting the person with the stroke as an inactive victim of the illness, and subsequently a passive recipient of care. Against this background we aimed to find out whether people with stroke and their families take positive actions in response to the condition, and if so, to explore the nature of these actions. In-depth interviews were conducted with a consecutive sample of 40 people admitted to hospital in the East End of London, 10 months after their stroke. People with stroke were found to play an active and creative role in managing the aftermath of their illness. They (i) mobilized informal social support; (ii) created new ways of doing things; (iii) took things more slowly; (iv) began the process of relearning; (v) exercized; and (vi) 'covered up'. Families were found to be a major resource. These findings challenge the view of people with stroke as 'victims', who bring about a 'burden of care', and suggest that the majority of work after stroke is conducted not by clinicians or by formal carers, but by the person with the stroke and their families, at home. This needs to be recognized and respected by formal carers, who should base their interventions around the systems and routines established by families.