Perspectives of people with aphasia post-stroke towards recovery & living successfully. A systematic review and qualitative evidence synthesis

Abstract

Introduction: Aphasia is an impairment in speaking, understanding, reading and writing following damage to the language centres of the brain. It affects one third of people with stroke. Health-related quality of life, return to work, morbidity and mortality are lower than for other stroke survivors. People with aphasia are systematically excluded from the stroke literature. Little is known about how best to support people with aphasia in achieving personally meaningful outcomes. Processes of adaptation, recovery and coping in the context of aphasia are not well understood. The objective of this review was to discover the perceptions of adults with aphasia post-stroke towards recovery, living successfully with aphasia and related constructs. The review is interpretive or configurative as opposed to aggregative and aims to advance conceptual understanding or theory. Methods: Embase, MEDLINE, Web of Science, Scopus, CINAHL, PsycINFO databases were searched systematically using search terms relevant to the following key concepts: Sample: Adults with aphasia as a result of stroke. Phenomenon of Interest: Living successfully, recovery, social participation, hope, friendship, coping, well-being, quality of life. Design: Interview, focus group, grounded theory etc. Evaluation: Perspectives, experiences, preferences, opinions. Research type: Qualitative methods and data collection and analysis. Comprehensive searching yielded 5666 hits after removal of duplicates. Search results were formally screened in 2 separate stages. Thirty-one articles were included for data extraction, critical appraisal and thematic synthesis within NVivo. Each stage was checked independently by at least 2 reviewers. The protocol was registered on Prospero. Results: There is a lack of qualitative research offering insights into these precise issues. Interesting findings were gleaned by looking at studies of living successfully, social participation, friendship, recovery, experiences of rehabiliation and services, active citizenship, legal and social justice needs, hope and the lived experience of aphasia. From these, we have developed a preliminary conceptual model of recovery and living successfully with aphasia. Discussion: Living successfully with aphasia is a dynamic, multi-faceted and individual construct facilitated in part by engagement in activities, meaningful relationships, autonomy and personal control, social support, maintaining positivity, change in perception of self over time and perceived communication improvement. People require long-term, responsive, interdisciplinary supports that focus on social re-integration and processes of adaptation to life with aphasia. Conclusions: The findings of this review advance our theoretical understanding of what is important to this population. This is crucial if we are to design and evaluate quality, integrated person-centred supports. Limitations: The findings are not generalisable to other contexts, however the model increases conceptual clarity and will be validated, tested and extended with an advisory group and through interviews with people with aphasia. Suggestions for future research: Research examining the perspectives of people with is fragmented and of variable quality. There is a need for specific qualitative research in this area. This review is part of a larger study, which aims to identify how best to support personal recovery for adults of working age with post-stroke aphasia in Ireland.