Support networks

8.7 The speech pathologist should connect the person with aphasia and their family, friends and carers with other people with aphasia, community aphasia groups, and support organisations

Reference:  Attard et al., 2015: Narrative review; Attard et al., 2018: Case series; Blom Johansson et al., 2022: Qualitative study; Grawburg et al., 2012: Qualitative study; Hilari et al., 2009: Qualitative study; Hilari et al., 2010: Nonrandomised observational study; Hilari et al., 2021: RCT; Lanyon et al., 2013: Systematic review of 29 studies (12 pre-post test case series, 10 single participant design studies, 4 RCTs, 3 non-randomised controlled trials); Lanyon et al., 2018: Qualitative study.

NHMRC  level of evidence: II

Rationale: Being discharged from hospital or outpatient care is a critical time point for people with aphasia and their families. Without appropriate supports, people with aphasia face a high risk of mood disturbance (Hilari et al., 2010), social isolation and poor quality of life (Hilari et al., 2009). Family members taking on carer roles also face a high risk of carer burden and reduced quality of life (Blom Johansson et al., 2022; Grawburg et al., 2012).

Research has shown that participation in community aphasia groups can benefit language, social participation, and community access for people with aphasia (Lanyon et al., 2013; Lanyon et al., 2018). People with aphasia and their carers report a range of benefits to psychological wellbeing from attending community aphasia groups, including forming positive relations with others, purpose in life, environmental mastery, autonomy, personal growth, and self-acceptance. (Attard et al., 2015). Similarly, research has shown improvements to mood and quality of life for people with aphasia participating in peer befriending programs (Hilari et al., 2021)

Appropriate supports may include:
•   peer befriending services (Hilari et al., 2021),
•   community-based groups for people with aphasia and their families (Attard et al., 2015, 2018; Lanyon et al., 2018), 
•   Aboriginal Community Controlled Health Organisations (see National Aboriginal Community Controlled Health Organisation, n.d.),
•   local and national aphasia advocacy organisations (e.g., The AAA),
•   aphasia research organisations, and • university-based aphasia clinics.

References:

1. Attard, M.C., Loupis, Y., Togher, L., & Rose, M.L, (2018). The efficacy of an inter-disciplinary community aphasia group for living well with aphasia. Aphasiology, 32(2), 105-138. DOI: 10.1080/02687038.2017.1381877
2. Attard, M.C., Lanyon, L., Togher, L., & Rose, M.L. (2015). Consumer perspectives on community aphasia groups: A narrative literature review in the context of psychological well-being. Aphasiology, 29(8), 983-1019. DOI: 10.1080/02687038.2015.1016888
3. Blom Johansson, M., Carlsson, M., Östberg, P., & Sonnander, K. (2022). Self-reported changes in everyday life and health of significant others of people with aphasia: A quantitative approach. Aphasiology, 36(1), 76-94. DOI:10.1080/02687038.2020.1852166 
4. 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
5. Hilari, K. & Byng, S. (2009). Health-related quality of life in people with severe aphasia. International Journal of Language & Communication Disorders, 44(2), 193-105. DOI: 10.1080/13682820802008820
6. Hilari, K., Behn, N., James, K., Northcott, S., Marshall, J., Thomas, S., Simpson, A., Moss, B., Flood, C., McVicker, S., & Goldsmith, K. (2021). Supporting wellbeing through peer-befriending (SUPERB) for people with aphasia: A feasibility randomised controlled trial. Clinical Rehabilitation, 35(8), 1151-1163. DOI: 10.1177/0269215521995671
7. Hilari, K., Northcott, S., Roy, P., Marshall, J., Wiggins, R.D., Chataway, J., & Ames, D. (2010). Psychological distress after stroke and aphasia: The first six months. Clinical Rehabilitation, 24(2), 181-190. DOI: 10.1177/0269215509346090
8. Lanyon, L. E., Rose, M. L., & Worrall, L. (2013). The efficacy of outpatient and community-based aphasia group interventions: a systematic review. International Journal of Speech Language Patholology, 15(4), 359-374. DOI: 10.3109/17549507.2012.752865
9. Lanyon, L., Worrall, L., & Rose, M. (2018). Exploring participant perspectives of community aphasia group participation: From “I know where I belong now” to “Some people didn’t really fit in”. Aphasiology 32(2): 139-163. DOI: 10.1080/02687038.2017.13965