‘It's been an extraordinary journey’: Experience of engagement from the perspectives of people with post‐stroke aphasia

Abstract

BackgroundEngagement is recognized as an important factor in aphasia treatment response and outcomes, yet gaps remain in our understanding of engagement and practices that promote engagement from the client perspective.AimsThe purpose of this phenomenological study was to explore how clients with aphasia experience engagement during their inpatient aphasia rehabilitation.Methods & ProceduresAn interpretative phenomenological analysis approach guided the study design and analysis. Data were collected through in‐depth interviews with nine clients with aphasia, recruited through purposive sampling, during their inpatient rehabilitation admission. Analysis was completed using a variety of analytic techniques including coding, memoing, triangulation between coders and team discussion.Outcomes & ResultsThe analysis revealed that for clients with aphasia in the acute phrase of recovery, the rehabilitation process resembles travelling on a journey through a foreign land. Successful engagement in the journey was accomplished when one had a therapist who served as a trusted guide and was able to be a friend, invested, adaptable, a co‐creator, encouraging and dependable.Conclusions & ImplicationsEngagement is a dynamic, multifaceted and person‐centred process involving the client, provider and rehabilitation context. Findings from this work have implications for measuring engagement, training student clinicians to be skilled facilitators in engaging their clients and implementing person‐centred practices that promote engagement within clinical settings.WHAT THIS PAPER ADDSWhat is already known on the subject Engagement is recognized as an important factor in rehabilitation treatment response and outcomes. Prior literature suggests that the therapist plays a critical role in facilitating engagement within the client–provider relationship. Communication impairments associated with aphasia may negatively impact a client's ability to develop interpersonal connections and participate in the rehabilitation process. There is a dearth of research directly exploring the topic of engagement in aphasia rehabilitation, particularly from the perspective of clients with aphasia. Capturing the client perspective can provide novel insights regarding practices to foster and maintain engagement in aphasia rehabilitation.What this paper adds to existing knowledge This interpretative phenomenological study revealed that for individuals with aphasia in the acute phase of recovery, the rehabilitation process resembles travelling on a sudden and foreign journey. Successful engagement in the journey was accomplished when one had a therapist who served as a ‘trusted guide’ and was able to be a friend, invested, adaptable, a co‐creator, encouraging and dependable. Through the client experience, engagement is seen as a dynamic, multifaceted and person‐centred process involving the client, provider and rehabilitation context.What are the potential or actual clinical implications of this work? The current study highlights the complexity and nuance of engagement within the rehabilitation context, which has implications for measuring engagement, training student clinicians to be skilled in engaging their clients and implementing person‐centred practices that promote engagement within clinical settings. It is necessary to recognize that client and provider interactions (and thus engagement) are embedded in and influenced by the broader healthcare system. With this in mind, a patient‐centred approach to engagement in aphasia care delivery cannot be achieved through individual efforts only and may require prioritization and action at the systems level. Future work is needed to explore barriers and facilitators to enacting engagement practices, in order to develop and test strategies to support practice change.