Search

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. [ABSTRACT FROM AUTHOR]

Objective: To explore subjective accounts of the consequences of stroke. Design: Qualitative methods using depth interviews. Participants and setting: Forty people sampled ten months post stroke from a hospital stroke register which was established in two adjacent health districts in North Thames Regional Health Authority. Results: Interviewees reported a number of ways in which the stroke had affected their daily lives, including difficulty with leaving the house, doing the housework, pursuing former leisure activities, inability to walk in the way they wanted, problems with communicating, washing, bathing and dressing, and with confusion and deteriorating memory. In all these areas people described the loss of social contact that accompanied these changes, and the loss of valued roles which had been embedded in the everyday functions they had previously performed. In general, people over the age of 70 were more seriously affected. Conclusion: The type of changes which people reported would not easily have been captured using standardized outcome measures, pointing to the value of qualitative methods in providing subjective accounts. In terms of clinical practice, there is a need to reduce people’s isolation after stroke by providing home visits after discharge, particularly to those living alone, and also by reducing disability through rehabilitation and by tackling the environmental obstacles which can imprison people in their homes. The findings suggest that many people with stroke would benefit from being able to talk about the changes which have occurred. Imaginative proposals are needed to develop ways to help replace the loss of activities, social contacts and social roles, particularly among older people with stroke. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented in response to a study by S. Sudlow and colleagues about the benefits of the proposed hyperacute stroke units (HASU) in London, England, in the June 18, 2009 issue.