Education for family members

2.5 People with aphasia and their family, friends and carers should be offered information about stroke and aphasia tailored to meet their changing needs using relevant language and communication formats.

Reference: Crocker et al., 2021: Cochrane review (not restricted to aphasia); Eames et al., 2013: RCT; Rose et al., 2003: Pre and post experimental design; Rose et al., 2018: Qualitative study; Simmons-Mackie et al., 2017: Qualitative study; Worrall et al., 2011: Qualitative study

NHMRC level of Evidence: I

Rationale: Education is a key component of aphasia rehabilitation which supports access to services and participation in healthcare decision-making (Rose et al., 2018). This can improve the way people with aphasia and their carers engage with rehabilitation, and their levels of self-efficacy (Eames et al., 2013). People with aphasia report the need for information about the causes and consequences of aphasia, their prognosis, and what to expect at different stages of recovery (Worrall et al., 2011).

This information should also be provided to families, carers, and friends of people with aphasia (Rose et al., 2018; Simmons-Mackie et al., 2017) so they can become more effective communication partners and advocates and ensure ongoing inclusion of the person with aphasia. Information should be tailored to meet individual needs using relevant language and communication formats (Worrall et al., 2011), including aphasia-friendly materials for people with aphasia (Rose et al., 2003). Information should be provided at different stages in the recovery process with opportunities for follow-up, clarification, and reinforcement of information (Crocker et al., 2021).

Some examples of useful stroke and aphasia resources include the Aphasia Handbook (SF/AAA, 2023), My Stroke Journey (SF, 2023 – also available in other languages), and Our Stroke Journey (SF, 2021).

Resources:

Aphasia as a symptom of stroke 

Stroke information and making written information aphasia-friendly 

References:

1. Cameron, J. I., & Gignac, M. A. M. (2008). "Timing It Right": a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient education and counseling, 70(3). doi: 10.1016/j.pec.2007.10.020
2. Eames, S., McKenna, K., Worrall, L., & Read, S. (2003). The suitability of written education materials for stroke survivors and their carers. Topics in Stroke Rehabilition, 10(3), 70-83.
3. Rose, T., Worrall, L., Hickson, L., & Hoffmann, T. (2010). Do people with aphasia want written stroke and aphasia information? A verbal survey exploring preferences for when and how to provide stroke and aphasia information. Topics in Stroke Rehabiliation, 17(2). doi: 10.1310/tsr1702-79
4. Smith, J., Forster, A., House, A., Knapp, P., Wright J., J., & Young, J. (2008). Information provision for stroke patients and their caregivers. Cochrane Database of Systematic Reviews, (2). http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD001919/frame.html doi:10.1002/14651858.CD001919.pub2
5. Worrall, L., Sherratt, S., Rogers, P., Howe, T., Hersh, D., Ferguson, A., & Davidson, B. (2011). What people with aphasia want: Their goals according to the ICF. Aphasiology, 25(3), 309-322. doi: 10.1080/02687038.2010.508530