Education for family members

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

Reference: Smith et al., 2008 Worrall et al., 2011
NHMRC level of Evidence: I, Qual.

Rationale: People with aphasia have reported that they want information about aphasia and stroke for themselves and their families. They also report wanting information about their prognosis and what to expect at different stages of rehabilitation (Worrall et al., 2011). Evidence suggests that this information should be: provided in a way that actively involves patients and carers and includes planned follow-up for clarification (Smith et al., 2008); is aphasia-friendly (Rose, Worrall, Hickson, & Hoffmann, 2010); and tailored to the specific needs and preferences of the patient and their family (Eames, McKenna, Worrall, & Read, 2003). When providing information, clinicians should be sensitive to the changing support needs of their clients (Cameron & Gignac, 2008).

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