Information sharing

8.4 At the time of any discharge or transition, information that includes current diagnosis, action plans, follow-up care, and goals should be provided to the person with aphasia, and their family, friends and carers using relevant language and communication formats.

References: The Canadian Stroke Strategy, 2010; 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:  GPP

Rationale:  At the time of any discharge or transition, the person with aphasia and their carers should be provided with up-to-date information that clearly defines the person’s diagnosis, functional abilities, significant interventions, and ongoing care (Canadian Stroke Strategy, 2010).

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, friends and carers of people with aphasia (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 and should be provided at different stages in the recovery process with opportunities for follow-up, clarification, and reinforcement of information (Crocker et al., 2021). 

 References:

1. The Canadian Stroke Strategy. (2010). Canadian Best Practice Recommendations for Stroke Care.  Ottawa, Ontario Canada: Canadian Stroke Network
2. Crocker, T. F., Brown, L., Lam, N., Wray, F., Knapp, P., & Forster, A. (2021). Information provision for stroke survivors and their carers. Cochrane Database of Systematic Reviews (11). DOI: 10.1002/14651858.CD001919.pub4 (not restricted to aphasia)
3. Eames, S., Hoffmann, T., Worrall, L., Read, S., & Wong, A. (2013). Randomised controlled trial of an education and support package for stroke patients and their carers. BMJ open, 3(5), e002538. DOI: 10.1136/bmjopen-2012-002538 
4. Rose, T., Worrall, L., & McKenna, K. (2003). The effectiveness of aphasia- friendly principles for printed health education materials for people with aphasia following stroke. Aphasiology, 17(10), 947-963. DOI: 10.1080/02687030344000319
5. Rose, T. A., Balse, A., Osmond, S., Poon, A., Simons, N., & Wallace, S. J. (2018). Aphasia education: Speech-language pathologists’ perspectives regarding current and optimal practice. Aphasiology, 32(8), 967-988. DOI: 10.1080/02687038.2018.1472366
6. Simmons-Mackie, N., Worrall, L., Murray, L. L., Enderby, P., Rose, M. L., Paek, E. J., & Klippi, A. (2017). The top ten: best practice recommendations for aphasia. Aphasiology, 31(2), 131-151. DOI: 10.1080/02687038.2016.1180662
7. 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