Exploring hope in people with Aphasia following stroke

Bright, FAS
Kayes, Nicola
McCann, Clare
McPherson, Kathryn
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Master of Health Science
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Auckland University of Technology

This study explored the experience of hope in people with aphasia following stroke during the post-acute rehabilitation period. Hope has been suggested to be important for recovery and rehabilitation in other healthcare populations. For example, some studies have found higher levels of hope to be associated with higher levels of quality of life. A systematic review of hope in people with stroke, completed as part of this thesis, suggested people with stroke consider hope essential for recovery. Hope appeared to be experienced in three different ways – as an inner state, as outcome-oriented and as an active process. It was also related to levels of quality of life and depression. However, the review was limited as there were only a small number of studies that explicitly explored hope after stroke. In addition, people with aphasia were sometimes excluded from these studies despite aphasia being a relatively common consequence of stroke. This current study drew on an Interpretive Description methodology to explore how hope was experienced by people with aphasia following stroke during the post-acute rehabilitation period, and what factors appeared to influence the experience of hope. Data were collected through multiple semi-structured interviews. Supported communication techniques were used to facilitate full participation of the individuals with aphasia. Data were analysed using a number of methods – coding, thematic analysis, narrative construction, diagramming and memoing. Five people in the post-acute period of rehabilitation participated in this study. Participants were between two and five months post-stroke at the time of the interviews; all were participating in rehabilitation through outpatient or community-based services. They were aged between 41 and 62 years of age and had varying aphasia severity, as measured by the Western Aphasia Battery – Revised. The data identified a core theme of “The Simplicity and Complexity of Hope”. Hope was experienced in two ways. Simply ‘having’ hope appeared to be the primary form of hope. It was a passive state where participants had a broad sense of hope about their present state and future possibilities. At times, participants engaged in actively hoping – an active, future-oriented form of hope that could involve a process of identifying hopes for the future and working toward hopes. While this experience of hope appeared simple at face value, analysis indicated it was dynamic and complex. A number of factors appeared to influence how a person experienced hope. These factors were: uncertainty about the future; viewing hope as double-sided; and a sense of disruption. These appeared to be influenced by the participants’ past experiences, current situation and perceived future. As a result, different forms of hope were experienced at different times. Sometimes they engaged in actively hoping and at other times, they appeared to retreat from actively hoping, instead focusing on simply ‘having’ hope. Based on the findings of this study and on the existing literature on hope after stroke, it appears that hope is a concept that is worthy of consideration by clinicians. As such, a number of suggestions for how clinicians may consider hope in people with aphasia following stroke are discussed. These range from being aware of hope through to actively intervening in order to promote hope. This work contributes to the current knowledge about hope after stroke by exploring hope in people with aphasia during the post-acute period of recovery. It gives voice to a client group who are commonly excluded from research. It enhances understanding of the ways hope may be experienced by this particular population, and highlights the complexities that may be inherent in a person’s experience of hope.

Hope , Aphasia , Stroke , Interpretive description
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