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.