Perspectives of people with aphasia post-stroke towards personal recovery and living successfully: A systematic review and thematic synthesis

Background There is increased focus on supporting people with chronic conditions to live well via person-centred, integrated care. There is a growing body of qualitative literature examining the insider perspectives of people with post-stroke aphasia (PWA) on topics relating to personal recovery and living successfully (PR-LS). To date no synthesis has been conducted examining both internal and external, structural influences on living well. In this study, we aimed to advance theoretical understanding of how best to promote and support PR-LS by integrating the perspectives of PWA on a wide range of topics relating to PR-LS. This is essential for planning and delivering quality care. Methods and findings We conducted a systematic review, following PRISMA guidelines, and thematic synthesis. Following a search of 7 electronic databases, 31 articles were included and critically appraised using predetermined criteria. Inductive and iterative analysis generated 5 analytical themes about promoting PR-LS. Aphasia occurs in the context of a wider social network that provides valued support and social companionship and has its own need for formal support. PWA want to make a positive contribution to society. The participation of PWA is facilitated by enabling environments and opportunities. PWA benefit from access to a flexible, responsive, life-relevant range of services in the long-term post-stroke. Accessible information and collaborative interactions with aphasia-aware healthcare professionals empower PWA to take charge of their condition and to navigate the health system. Conclusion The findings highlight the need to consider wider attitudinal and structural influences on living well. PR-LS are promoted via responsive, long-term support for PWA, friends and family, and opportunities to participate autonomously and contribute to the community. Shortcomings in the quality of the existing evidence base must be addressed in future studies to ensure that PWA are meaningfully included in research and service development initiatives. Systematic review registration International Prospective Register of Systematic Reviews PROSPERO 2017: CRD42017056110.

All author comments / interpretations in the 'findings/results' section relating to the experiences, preferences and perspectives of people with aphasia post-stroke, discovered through qualitative interviews and/or focus group discussions.
'Actively hoping captured the sense that participants engaged with a future-oriented hope by identifying hopes for the future and working towards hopes' (1) Any author comments/ interpretations in other sections of the article that (1) relates to the experiences, preferences and perspectives of people with aphasia post-stroke, discovered through qualitative interviews and/or focus group discussions, and (2) are described differently to the main results section.
"It may be that people are more likely to engage in actively hoping later in recovery when they are more likely to be active in thinking about the future" (1) Text appearing in table format including quotes or interpretations will be included in the synthesis only if it does not appear elsewhere within the main body of the text.

EXCLUDE:
Example Text / quotes that are not clearly from participants with aphasia post-stroke, or that are clearly from participants without aphasia (e.g. relatives, caregivers, clinicians) and / or people with aphasia of aetiologies other than stroke (e.g. traumatic brain injury). "A few people were less positive, complaining about therapy being too theoretical or irrelevant to their particular needs. Claire found her therapy patronising and ''stupid'' as her husband Tom explained: Well, I think it was a lost cause. She (the therapist) had a routine … with the cards and all that sort of gear. To my mind that's a bit degrading, putting you back to about grade one or two at school, you know, hat and cat and mat stuff Author comments/interpretations of data that are not clearly from participants with aphasia post-stroke, or that are clearly from participants without aphasia (e.g. relatives, caregivers, clinicians) and / or people with aphasia of aetiologies other than stroke (e.g. traumatic brain injury).
In the following example it is unclear whether the author is interpreting data from people with aphasia and or their relatives: "People often talked about recovery as unpredictable and non-linear, with periods of positive change and periods of regression. Despite the difficulties of not knowing what would happen, some interviewees remained hopeful for change, even in cases where the aphasia was severe" (2) Author comments/interpretations of data collected using methods other than qualitative interviews or focus group discussions.
Author comments/interpretations not directly relating to the experiences, preferences and perspectives of people with aphasia post-stroke (e.g. broader discussion relating to the clinical implications of the key findings and concepts).
"It indicates clinicians should consider hope in people with aphasia after stroke, as it is important to those people and it appears related to common components of the rehabilitation process such as goal setting" (1) Text that links key concepts and findings with prior literature in the area (generally in discussion section). Meta-comments regarding the study methodology and its possible impact on the key findings and concepts (generally in discussion section).
"The questions asked influenced the responses with different questions identifying different aspects of the experience of hope" (1) Tables (commonly appearing in the results/findings sections) that list key factors, concepts, themes which are already listed and described within the main body of the text; and which do not contain quotes or interpretations that appear elsewhere in the main body of the text. This is to avoid duplication and unnecessary lists within the synthesis data. "Box 1: perceived engagement in participation defined by: . Being involved . Not being burdensome . Knowing what is going on . Taking part . Being respected" (3)