City Research Online

Abstract

Background and aims: Aphasia, a language disability, is common following a stroke. People with aphasia are at risk of becoming depressed and isolated, yet due to their communication difficulties healthcare staff find it challenging to support their emotional wellbeing. This study aimed to explore what people with aphasia and their families consider important when training healthcare staff to support their psychological wellbeing post stroke.
Methods: We ran co-design workshops with six stakeholders with lived experience: four people with aphasia and two family members. The content of the workshops was allowed to evolve in a collaborative manner, with an assumed equality between the facilitators and lived experience stakeholders. Workshop material was analysed using Framework Analysis. We then co-produced four films to raise awareness and train healthcare professionals.
Results: Five main themes from the workshops were: (1) interactions with healthcare staff that support psychological wellbeing (e.g., listening with empathy, seeing patients as people, hope and encouragement, kindness, knowledge of aphasia); (2) interactions with healthcare staff that damage psychological wellbeing (e.g., feeling told off, being talked about and not included, not feeling listened to, not being supported to communicate, not feeling treated like a human being); (3) experiences of psychological therapy and mental health services; (4) who should provide psychological support; (5) influencing healthcare practice. The four films emphasised the personal journeys of lived experience stakeholders and their accounts of interacting with healthcare staff.
Discussion: Lived experience stakeholders felt strongly that their messages should be heard by all healthcare staff, not just those who elect to go on specialist training courses. They considered that supporting emotional wellbeing is the responsibility of all staff within stroke care.
Patient or public contribution: People with aphasia and family member stakeholders shaped all aspects of this study; outputs were allowed to evolve in response to their priorities. Initially, the researchers had anticipated that the focus would be on specialist training courses in psychological therapy; this shifted to a new focus on influencing how all healthcare staff interact with patients, including both non-clinical staff and staff who would not elect to go on a specialist training course. The co-produced films were a direct result of lived experience stakeholder suggestions and priorities.

Publication Type:	Article
Additional Information:	© 2025 The Author(s). Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Publisher Keywords:	aphasia; humanising care; co-production; emotional recovery; psychological wellbeing
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Departments:	School of Health & Medical Sciences School of Health & Medical Sciences > Language & Communication Science
SWORD Depositor:	Symplectic Administrator

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