Prognostication in Poststroke Aphasia: Perspectives of Significant Others of People With Aphasia on Receiving Information About Recovery

Abstract

Purpose: Knowing what to expect poststroke is important for many significant others of people with aphasia, yet an understanding of their perceptions and preferences in receiving prognostic information is limited. This knowledge is needed to inform the formulation and delivery of aphasia prognoses as conversations about prognosis can be harmful or helpful depending on their alignment with key stakeholder perspectives. Our preliminary study sought insight into the perspectives of significant others of people with aphasia on receiving prognostic information, with an aim toward informing evidence-based practice in aphasia prognostication. Method: We interviewed seven significant others of people with aphasia, 3–12 months poststroke. The interviews were semistructured, conducted one-to-one, and analyzed qualitatively using reflexive thematic analysis. Results: Five themes were drawn from the interviews: (a) You don't know what you don't know. (b) Having them alive is the best you can ask for. (c) Recovery in the eye of the beholder. (d) Outcomes don't matter unless they help me help them. (e) It's my prognosis too if I'm living with aphasia. Conclusions: A significant other's prognosis-related perceptions and preferences are products of their poststroke reality and may inadvertently shape that of the person with aphasia. In order to facilitate recovery, prognostication practices need to consider the needs of significant others both as providers of care and as requiring care themselves for their first-hand experiences of third-party disability.

Aphasia Depression and Psychological Therapy (ADaPT): Perspectives of People with Post-Stroke Aphasia on Participating in a Modified Cognitive Behavioral Therapy

“…The purpose is to derive meaning and sense of the data from using the researcher's experiences and values, rather than aiming to search for objectivity and remove bias [20,21]. The approach has been used in previous research on aphasiology, for example, in exploring prognostication in post-stroke aphasia, and also in treatment studies, for example, in exploring experiences of interventions in healthcare [22,23]. Individual interviews were chosen to enable participants to have their experiences conveyed in a supportive communication environment with the researcher (CB) [24].…”