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

Abstract

Scand J Caring Sci; 2020; 34: 428-435 Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke 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.

“Now I Am Myself”: Exploring How People With Poststroke Aphasia Experienced Solution-Focused Brief Therapy Within the SOFIA Trial

“…To turn first to the “restoration work,” participants reported finding it useful to have the opportunity to explore their hopes, as well as notice their own achievements and successes. This matches other research, which has found that hope is a “critical resource for people with aphasia,” sustaining them through uncertain times and creating a sense of possibility for constructing a poststroke life ( Bright et al, 2020 ). Instilling hope, through noticing progress, noticing the person, and noticing their hopes for new possibilities, rather than defining them through their linguistic deficits, may be a helpful focus for clinical interactions ( Bright et al, 2020 ; Lawton et al, 2018 ).…”

“…This matches other research, which has found that hope is a “critical resource for people with aphasia,” sustaining them through uncertain times and creating a sense of possibility for constructing a poststroke life ( Bright et al, 2020 ). Instilling hope, through noticing progress, noticing the person, and noticing their hopes for new possibilities, rather than defining them through their linguistic deficits, may be a helpful focus for clinical interactions ( Bright et al, 2020 ; Lawton et al, 2018 ). Other research exploring SFBT with clients living with chronic health conditions has also described how the approach can instill hope ( Carr et al, 2014 ; Froerer et al, 2009 ).…”

‘Emotion is of the essence. … Number one priority’: A nested qualitative study exploring psychosocial adjustment to stroke and aphasia

“…Similarly, Bright et al . (2020) observed that at 1 year post‐onset, all four of their participants had a broad sense of hope for the future, and had recalibrated their early post‐stroke hopes by reflecting on past progress, current function and future desirable outcomes. In particular, those with a strong sense of self appeared capable of tolerating uncertainty and maintaining optimism.…”

Theorising rehabilitation: Actors and parameters shaping normality, liminality and depersonalisation in a UK hospital

“…Limited but valuable empirical work comment on some of these points. Bright et al (2020) and McPherson et al (2004) draw attention to the multitude ways in which outpatients hope to recover following a life‐changing condition. Similarly, Wiles et al (2008) and Ostler et al (2014) demonstrate that patients can accommodate contradicting ideas about recovery.…”