Addressing needs of family, friends and carers

5.6 Aphasia rehabilitation should address the needs of family, friends and carers.

References: Bakas et al., 2006: Non-randomised observational study; Grawburg et al., 2012: Systematic review of 27 studies (13 qualitative, 12 quantitative, and 2 mixed-method studies); Howe et al., 2012: Qualitative study; Rose, 2023: Discussion paper; Simmons-Mackie et al., 2010: Systematic review of 31 studies (11 group designs, 8 case studies, 7 SCEDs, 5 qualitative studies); Simmons-Mackie et al., 2016: Systematic review of 25 studies (11 group studies, 11 case studies, 2 qualitative studies and 1 SCED); Wallace et al., 2017: Synthesis of 3 consensus studies

NHMRC Level of Evidence: II

Rationale: Family and friends of people with aphasia frequently report negative stroke-related outcomes (Grawburg et al., 2012) – more so than people who care for stroke survivors without aphasia (Bakas et al., 2006). Family and friends of people with aphasia also find their relationships changed following stroke and identify needs and rehabilitation goals for themselves (Grawburg et al., 2012; Howe et al., 2012; Wallace et al., 2017). These goals include being provided with hope and positivity, information, support (e.g., psychosocial and financial), being included in the rehabilitation process, communicating with and maintaining their relationship with the person with aphasia, looking after their own wellbeing, and coping with new responsibilities (Howe et al., 2012). Speech pathologists should view family, friends and carers as direct recipients of aphasia intervention, alongside people with aphasia (Rose, 2023). 

CPT (see statements 1.4, 2.5 and 5.23) is one intervention that may contribute to positive outcomes for communication partners including increased knowledge of aphasia, use of effective communication strategies, and increased self-confidence and positivity towards communication activities and participation for people with chronic aphasia (Simmons-Mackie et al., 2010; Simmons-Mackie et al., 2016).

References: 

1. Bakas, T., Kroenke, K., Plue, L. D., Perkins, S. M., & Williams, L. S. (2006). Outcomes among family caregivers of aphasic versus non aphasic stroke survivors. Rehabilitation Nursing, 31(1), 33–42. DOI: 10.1002/j.2048-7940.2006.tb00008.x
2. Grawburg, M., Howe, T., Worrall, L., & Scarinci, N. (2012) A systematic review of the positive outcomes for family members of people with aphasia. Evidence-Based Communication Assessment and Intervention, 6(3) 135-149, DOI:10.1080/17489539.2012.739383
3. Howe, T., Davidson, B., Worrall, L., Hersh, D., Ferguson, A., Sherratt, S., & Gilbert, J. (2012). ‘You needed to rehab families as well’: family members’ own goals for aphasia rehabilitation. International Journal of Language & Communication Disorders, 47(5). DOI: 10.1111/j.1460- 6984.2012.00159.x
4. Rose, M. L. (2023). Elizabeth Usher memorial lecture: Beyond our practice borders-using a biopsychosocial framework to improve long-term outcomes for people living with aphasia. International Journal of Speech Language Pathology, 25(3), 346–354. https://doi.org/10.1080/17549507.2023.2220995
5. Simmons-Mackie, N., Raymer, A., Armstrong, E., Holland, A., & Cherney, L., R. (2010). Communication partner training in aphasia: a systematic review. Archives of Physical Medicine and Rehabilitation, 91(12), 1814- 1837.
6. Simmons-Mackie, N., Raymer, A., & Cherney, L.R. (2016). Communication partner training in aphasia: An updated systematic review. Archives of Physical Medicine and Rehabilitation, 97(2), 2202-2221. DOI: 10.1016/j.apmr.2016.03.023
7. Wallace, S.J., Worrall, L., Rose, T., & Le Dorze, G. (2017). Using the International Classification of Functioning, Disability, and Health to identify outcome domains for a core outcome set for aphasia: A comparison of stakeholder perspectives. Disability and Rehabilitation, 41(5), 564-573. DOI: 10.1080/09638288.2017.1400593