Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke

Abstract

Background: Hope is a critical resource for people with aphasia after stroke, sustaining people though times of distress and uncertainty and providing motivation. In the first months after stroke, hope is vulnerable to different influences, and people can struggle to identify and work towards hopes for the future. We have little knowledge about how people with aphasia experience hope in the longer term after stroke.

Objectives: To identify how people with aphasia experience hope 1 year after stroke and how hope may change in the year after stroke.

Methods: The study used an Interpretive Description methodology. Interviews were conducted with four people with aphasia who had been interviewed 1 year previously. These were analysed using content analysis.

Results: All people reported a broad sense of hope for the future. They described an active process of recalibrating their early poststroke hopes through a process of reflecting on past progress, current function and what they considered might be possible and desirable in the future. People were able to develop 'new' hopes that were meaningful and seemingly achievable when they had a sense of a possible, desirable future. Those who struggled to see a possible future maintained a hope that things will be good. Social supports, a sense of progress, engagement in meaningful activities and interactions appeared crucial in helping people (re)develop hopes for their future.

Conclusions: Hope and hopes for the future gradually changed after stroke. Hope, identity and social connectedness were closely entwined and could enable people to both dwell in the present and move towards desired futures. This research suggests clinicians should prioritise creating hope-fostering environments which support people to develop hope for their future.

Keywords: adjustment; aphasia; hope; stroke.