Background: Written information promotes health literacy and improves consumer engagement, confidence in health-related decision making and wellbeing (World Health Organisation, 2004). Written information should be current, accurate and relevant. The Living with Aphasia: A Guide for Carers (LWAG) was (published in 2005, updated in 2014) developed to provide education and support to carers of people with aphasia.

Aims: i) obtain consumer (speech pathologist and family/ friends of people with aphasia) perspectives of the LWAG; ii) modify the LWAG with updated consumer feedback.


Methods: Semi-structured questionnaires explored consumer feedback. Fifteen Speech Pathology departments and six family members/ friends of people with aphasia in acute, subacute and community settings completed the questionnaires. A working party of speech pathologists integrated the updated research evidence and consumer feedback in a revised edition of the LWAG.

Results:
Family members/ friends of people with aphasia perceived that the LWAG could be improved with updated photographs and support information; practical examples; and a focus on hope, positivity, and prognosis.
Speech pathologists perceived the LWAG could be improved with updated photographs and website links; removal of repeated information; use of positive wording; simplification of information; and modification of the term ‘carers’.
The LWAG was updated to include: photographs with a range of representation of age, gender and ethnicity; evidence on neuroplasticity, therapy timing and dosage, communication strategies, enriched communication environments; simplification of visual graphics and wording; updated resources, websites and links; changed terminology from ‘carer’ to family and friends; a focus on prognosis, adjustment and living with aphasia.

Discussion: Research evidence and consumer feedback informed the updated LWAG with the potential to promote health literacy, increase consumer confidence and participation in health-related decision making. The updated version has been published and currently available for purchase.

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NSW Council of Social Services, 2017, Principles of Co-Design, Fair Deal Forum (November 2016), Dr Ingrid Burkett (The Australian Centre for Social Innovation)