Aphasia disrupts usual care: “I’m not mad, I’m not deaf” – the experiences of individuals with aphasia and family members in hospital

Communication difficulties are highly prevalent in the stroke population, with implications for patient experience, safety and outcomes. This study explores the experiences of people with aphasia and family members regarding healthcare communication in acute and subacute stroke settings. A phenomenological approach was used to understand participants’ experiences. Participants took part in a focus group and data were analysed using an inductive thematic approach. For individuals with aphasia (<i>n</i> = 4) and family members (<i>n</i> = 2), five themes were generated: “aphasia makes it hard to communicate,” “hospital staff focus on the patient’s medical status only,” “people with aphasia do not get the help they need to improve,” “staff lack the skills to communicate with people with aphasia,” and “staff are crucial to improving healthcare communication.” The stroke team has expertise in the medical management of stroke but struggle to communicate with patients with aphasia. Patients’ experience of healthcare communication is often one-way and limited to following instructions, with missed opportunities to discuss core topics such as prognosis, rehabilitation, and person-specific needs. Patients and families assert that all members of the stroke healthcare team should be able to adapt communication to accommodate patients. Person-centred care is not a reality for many patients with aphasia.Many healthcare conversations, including informal assessments and discussing prognosis, are not accessible for people with aphasia.Consequently, for people with aphasia, healthcare in hospital is characterised by confusion and exclusion.Staff are crucial to improving healthcare communication; when appropriate strategies were used, these were not only effective but very meaningful to patients. Person-centred care is not a reality for many patients with aphasia. Many healthcare conversations, including informal assessments and discussing prognosis, are not accessible for people with aphasia. Consequently, for people with aphasia, healthcare in hospital is characterised by confusion and exclusion. Staff are crucial to improving healthcare communication; when appropriate strategies were used, these were not only effective but very meaningful to patients.

脑卒中人群的沟通障碍患病率极高，对患者就医体验、医疗安全及预后转归均有显著影响。本研究旨在探索失语症（aphasia）患者及家属在急性与亚急性卒中诊疗场景中的医疗沟通体验。本研究采用现象学研究方法，以深入理解受试者的沟通体验。受试者参与焦点小组访谈，数据采用归纳式主题分析法进行分析。本次研究共纳入失语症患者4例（n=4）及家属2例，最终提炼出5个核心主题：“失语症严重阻碍沟通”、“医院医护人员仅关注患者病情状态”、“失语症患者未获得改善沟通所需的支持”、“医护人员缺乏与失语症患者沟通的专业技能”、“医护人员对改善医疗沟通至关重要”。

卒中诊疗团队具备卒中医疗管理的专业能力，但在与失语症患者沟通方面存在明显短板。患者的医疗沟通体验往往单向且受限，仅能被动遵循医嘱，错失了讨论预后、康复治疗及个性化需求等核心议题的机会。患者及家属均主张，卒中医疗团队的所有成员都应调整沟通方式，以适配失语症患者的需求。对于多数失语症患者而言，以患者为中心的照护并未成为现实。许多医疗沟通场景，包括非正式评估与预后讨论，均无法为失语症患者所参与。因此，失语症患者的住院医疗过程往往充斥着困惑与被排斥感。医护人员对改善医疗沟通至关重要；当采用恰当的沟通策略时，不仅能有效解决沟通障碍，更能让患者感受到切实的意义。

以患者为中心的照护并未成为现实。许多医疗沟通场景，包括非正式评估与预后讨论，均无法为失语症患者所参与。因此，失语症患者的住院医疗过程往往充斥着困惑与被排斥感。医护人员对改善医疗沟通至关重要；当采用恰当的沟通策略时，不仅能有效解决沟通障碍，更能让患者感受到切实的意义。