School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia, Australia.
Queensland Aphasia Research Centre, The University of Queensland, Herston, Australia.
Neuropsychol Rehabil. 2023 Jun;33(5):871-902. doi: 10.1080/09602011.2022.2051565. Epub 2022 Mar 17.
Many people with aphasia (language impairment post-stroke) want to know their prognosis for recovery, yet current understanding of their experience of receiving prognoses is limited. Such insight is necessary to inform clinical practice in formulating and delivering aphasia prognoses, especially given the psycho-emotional distress and secondary adverse effects on recovery associated with conversations about prognosis. We sought an in-depth understanding of the perspectives of people with aphasia in relation to receiving prognoses post-stroke, with the aim of informing an evidence-based approach to aphasia prognostication in clinical practice. Semi-structured interviews, facilitated by communication support strategies, were conducted one-to-one with eight people with aphasia (ranging from mild to very severe) 3-12 months post-stroke. Reflexive thematic analysis was used to analyse the qualitative data, yielding two over-arching themes: (1) How would you know without knowing me?; (2) I need to know, but I don't want to know. Our findings illustrate issues of mistrust within the patient-clinician relationship, and complex emotions relating to hope and post-stroke adjustment. The present insight into the lived experience of receiving aphasia prognoses highlights the need for focused consideration of personal definitions of normalcy, measures for fostering trust, and the role of prognostic uncertainty.
许多失语症患者（中风后语言障碍）想了解自己的恢复预后，但目前对他们接受预后的体验的了解有限。这种深入了解对于告知临床实践中制定和提供失语症预后至关重要，特别是考虑到与预后相关的谈话会引起心理情绪困扰和对恢复的继发性不良影响。我们旨在深入了解失语症患者在中风后接受预后的观点，以便为临床实践中的失语症预后提供循证方法。通过使用沟通支持策略，对 8 名失语症患者（从轻度到非常严重）进行了一对一的半结构化访谈，这些患者在中风后 3-12 个月。使用反思性主题分析对定性数据进行了分析，得出了两个总体主题：（1）如果不了解我，你怎么会知道？；（2）我需要知道，但我不想知道。我们的研究结果说明了患者与临床医生关系中的信任问题，以及与希望和中风后调整相关的复杂情绪。目前对接受失语症预后的亲身体验的深入了解，突出了需要重点考虑正常的个人定义、建立信任的措施以及预后不确定性的作用。
