Background: While the negative impact of aphasia has been the focus of much research, few studies have investigated more positive examples of people living with aphasia. Exploring the concept of living successfully with aphasia from an insider perspective can enhance current research by providing positively framed data that balance this negative skew. Collectively, the perspectives of people with aphasia on themes of importance for living successfully with aphasia may inform clinical interventions and other communitybased services, enabling positive adaptive factors and processes identified in the research to be promoted and ultimately improving the quality of life for people with aphasia. Aims: The aim of this study was to explore, from the perspectives of people with aphasia, the meaning of living successfully with aphasia. Methods & Procedures:Semi-structured in-depth interviews were conducted with 25 participants with aphasia. All participants had aphasia as a result of stroke, lived in the community, and were at least 2 years post-stroke. As an adjunct to the interview process participants were asked to take photographs of what living successfully with aphasia meant to them. These photographs formed the basis of discussion for a second interview. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis (Smith, Jarman, & Osborn, 1999). Outcomes & Results: Analysis of participant transcripts revealed that the concept of living successfully with aphasia is complex, and highly individualised. Four core themes related to living successfully with aphasia emerged from the data: doing things; meaningful relationships; striving for a positive way of life; and communication. Conclusions: Research focusing on living successfully with aphasia challenges researchers and clinicians to focus on positive adaptive processes and factors. Further research is indicated to develop the concept of living successfully with aphasia further and explore how best to work in partnership with individuals with aphasia to ensure their priorities for living with aphasia are addressed.
Aphasia has been found to impact on friendships. A need exists for research and intervention programs to address communication with friends for older people with aphasia.
Background: A core outcome set (COS; an agreed, minimum set of outcomes) was needed to address the heterogeneous measurement of outcomes in aphasia treatment research and to facilitate the production of transparent, meaningful and efficient outcome data. Objective: The Research Outcome Measurement in Aphasia (ROMA) consensus statement provides evidence-based recommendations for the measurement of outcomes for adults with post-stroke aphasia within phase I-IV aphasia treatment studies. Methods: This statement was informed by a four-year program of research which comprised investigation of stakeholder-important outcomes using consensus processes, a scoping review of aphasia outcome measurement instruments, and an international consensus meeting. This paper provides an overview of this process and presents the results and recommendations arising from the international consensus meeting. Results: Five essential outcome constructs were identified: Language, communication, patient-reported satisfaction with treatment and impact of treatment, emotional wellbeing, and quality of life. Consensus was reached for the following measurement instruments: Language: The Western Aphasia Battery Revised (WAB-R) (74% consensus); emotional well-being: General Health Questionnaire (GHQ)-12 (83% consensus); quality of life: Stroke and Aphasia Quality of Life Scale (SAQOL-39) (96% consensus). Consensus was unable to be reached for measures of communication (where multiple measures exist) or patientreported satisfaction with treatment or impact of treatment (where no measures exist). Discussion: Harmonisation of the ROMA COS with other core outcome initiatives in stroke rehabilitation is discussed. Ongoing research and consensus processes are outlined. Conclusion: The WAB-R, GHQ-12, and SAQOL-39 are recommended to be routinely included within phase I-IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the ROMA consensus panel
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