The relevance of stroke care for living well with post-stroke aphasia: a qualitative interview study with working-aged adults

Abstract

Purpose

This study aimed to explore the perspectives of working-aged adults with post-stroke aphasia (PWA) towards what has or would help them in living well with aphasia (LWA). This paper reports the findings in relation to stroke care and its relevance for LWA.

Materials and methods

This qualitative study was designed with input from a Public and Patient Involvement advisory group. We conducted in-depth, semi-structured interviews with 14 PWA. Data were analysed following principles of reflexive thematic analysis.

Results

Support services and LWA spanned five themes: Inpatient care; Support in the community; Speech therapy; Mental health; and Aphasia education and training. Per the findings, all aspects of stroke care were affected and challenged by aphasia. Access to services and information was variable. PWA of working-age, their families and children need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. Healthcare workers must be equipped with aphasia competency.

Conclusions

The results highlight a need for equitable, transparent, responsive access to services, information and stroke liaison support. The findings extend knowledge of the importance of stroke care for supporting working-aged adults and their families to live well in the context of aphasia.

Implications for rehabilitation

• There is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia.

• People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery.

• This includes flexible access to mental healthcare and speech and language therapy.

• In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support.

• Training to improve aphasia competency is imperative for healthcare workers.

Keywords:

• Aphasia
• health services research
• language therapy
• patient involvement
• rehabilitation
• stroke

Acknowledgements

The authors gratefully acknowledge the following supporters and enablers, without whom this project would not have been possible: our PPI aphasia advisory group; the referring Speech and Language Therapists and third-sector support organisations; and the interview participants.

Disclosure statement

No potential conflict of interest was reported by the author(s).