Improving How Healthcare Staff Support the Psychological Well-Being of People Living With Post-Stroke Aphasia: A Co-Created Study

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 well-being. This study aimed to explore what people with aphasia and their families consider important when training healthcare staff to support their psychological well-being 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 well-being (e.g., listening with empathy, seeing patients as people, hope and encouragement, kindness and knowledge of aphasia); (2) interactions with healthcare staff that damage psychological well-being (e.g., feeling told off, being talked about and not included, not feeling listened to, not being supported to communicate and not feeling treated like a human being); (3) experiences of psychological therapy and mental health services; (4) who should provide psychological support and (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 well-being 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 stakeholders' suggestions and priorities.