Towards a community of care for people with aphasia: Some lessons on working in multicultural settings

References

• Abubakar, I., Aldridge, R. W., Devakumar, D., Orcutt, M., Burns, R., Barreto, M. L., ... Zimmerman, C. (2018). The UCL–Lancet Commission on Migration and Health: The health of a world on the move. The Lancet, 392, 2606–2654. doi:10.1016/S0140-6736(18)32114-7
   PubMed Web of Science ®Google Scholar
• Africa, S. S. (2011). Census 2011. Retrieved from https://www.statssa.gov.za/publications/P03014/P030142011.pdf
   Google Scholar
• Algurén, B., Lundgren-Nilsson, Å., & Sunnerhagen, K. S. (2009). Facilitators and barriers of stroke survivors in the early post-stroke phase. Disability and Rehabilitation, 31, 1584–1591. doi:10.1080/09638280802639004
   PubMed Web of Science ®Google Scholar
• Amod, N. (2017). Communication environments for people with aphasia post stroke in a home for the aged. Unpublished 4th year research report, University of the Witwatersrand, Johannesburg.
   Google Scholar
• 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, 983–1019. doi:10.1080/02687038.2015.1016888
   Web of Science ®Google Scholar
• Barry, C. A., Stevenson, F. A., Britten, N., Barber, N., & Bradley, C. P. (2001). Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor–Patient communication in general practice. Social Science & Medicine, 53, 487–505. doi:10.1016/S0277-9536(00)00351-8
   PubMed Web of Science ®Google Scholar
• Benner, P. (2000). The wisdom of our practice. The American Journal of Nursing, 100, 99–105.  doi:10.1097/00000446-200010000-00075
   PubMed Web of Science ®Google Scholar
• Bham, Z., & Ross, E. (2005). Traditional and western medicine: Cultural beliefs and practices of South African Indian Muslims with regard to stroke. Ethnicity and Disease, 15, 548.
   PubMed Web of Science ®Google Scholar
• Braun, V., Clarke, V., Hayfield, N., & Terry, G. (2019). Thematic analysis. In P. Liamputtong (Ed.), Handbook of research methods in health social sciences (pp. 843–860). Singapore: Springer.
   Google Scholar
• Brewer, K. M., McCann, C. M., Worrall, L. E., & Harwood, M. L. (2015). New Zealand speech–Language therapists’ perspectives on service provision for Māori with aphasia. Speech, Language and Hearing, 18, 140–147. doi:10.1179/2050572814Y.0000000060
   Google Scholar
• Castelli, F. (2018). Drivers of migration: Why do people move?. Journal of Travel Medicine, 25, tay040. doi:10.1093/jtm/tay040.
   Web of Science ®Google Scholar
• Centeno, J. G. (2015). Assessing services with communicatively impaired bilingual adults in culturally and linguistically diverse neurorehabilitation programs. Journal of Communication Disorders, 58, 58–73. doi:10.1016/j.jcomdis.2015.10.005
   PubMed Web of Science ®Google Scholar
• Centeno, J. G. (2017). Guest editor’s column: Clinical management of communicatively-impaired adult neurorehabilitation caseloads in a diverse aging world. SIG 2 Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 2(Part, 88–90. doi:10.1044/persp2.SIG2.88
   Google Scholar
• Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons Mackie, N. (2000). Life participation approach to aphasia: A statement of values for the future. The ASHA Leader, 5, 4–6. doi:10.1044/leader.FTR.05032000.4
   Google Scholar
• Charon, R. (2008). Narrative medicine: Honoring the stories of illness. London: Oxford University Press.
   Google Scholar
• Ciccone, N., Armstrong, E., Hersh, D., Adams, M., & MCAllister, M. (2019). The Wangi (talking) project: A feasibility study of a rehabilitation model for aboriginal people with acquired communication disorders after stroke. International Journal of Speech-Language Pathology, 21, 305–316. doi:10.1080/17549507.2019.1595146
   PubMed Web of Science ®Google Scholar
• D’souza, S., Janssen, H., Hersh, D., Ciccone, N., Armstrong, E., Galan-Dwyer, M., ... Godecke, E. (2017). Stroke in-patient activity early after stroke: Individual and environmental barriers and facilitators to communication. International Journal of Stroke, 12, 14. doi:10.1177/1747493017720548
   Web of Science ®Google Scholar
• Elman, R. J. (2007). Group treatment of neurogenic communication disorders: The expert clinician’s approach ((2nd ed.). Oxford: Plural Publishing.
   Google Scholar
• Frattali, C. M., Thompson, C. K., Holland, A. L., Wohl, C. B., & Ferketic, M. M. (1995). American Speech-Language Hearing Association Functional Assessment of Communication Skills for Adults. Rockville, MD: ASHA.
   Google Scholar
• Germond, P., & Cochrane, J. R. (2010). Healthworlds: Conceptualizing landscapes of health and healing. Sociology, 44, 307–324. doi:10.1177/0038038509357202
   Google Scholar
• Habermas, J. (1984). The theory of communicative action, reason and the rationalization of society (Vol. 1). London: Heinemann.
   Google Scholar
• Hartwell, J. (2015). Access denied: an investigation of the impact of aphasia on social inclusion in long-term care facilities. Unpublished Doctoral thesis, University of Louisiana at Lafayette.
   Google Scholar
• Health Professions Council of South Africa. (2018). Statistics. Retrieved from https://www.hpcsa.co.za/Publications/Statistics
   Google Scholar
• Hersh, D., Godecke, E., Armstrong, E., Ciccone, N., & Bernhardt, J. (2016). ‘Ward Talk’: Nurses’ interaction with people with and without aphasia in the very early period poststroke. Aphasiology, 30, 609–628. doi:10.1080/02687038.2014.933520
   Web of Science ®Google Scholar
• Hinckley, J. J. (2015). Telling the story of stroke when it’s hard to talk. Topics in Language Disorders, 35, 258–266. doi:10.1097/TLD.0000000000000066
   Web of Science ®Google Scholar
• hooks, B. (2008). Belonging: A culture of place. London: Routledge.
   Google Scholar
• Howe, T. J., Worrall, L. E., & Hickson, L. M. (2008). Observing people with aphasia: Environmental factors that influence their community participation. Aphasiology, 22, 618–643. doi:10.1080/02687030701536024
   Web of Science ®Google Scholar
• Huang, A. J., Siyambalapitiya, S., & Cornwell, P. (2019). Speech pathologists and professional interpreters managing culturally and linguistically diverse adults with communication disorders: A systematic review. International Journal of Language & Communication Disorders, 54, 689–704. doi:10.1111/jlcd.v54.5
   PubMed Web of Science ®Google Scholar
• Iwama, M., Farhan, H., Hanrahan, E., Kaufman, A., Nelson, A., & Patel, N. (2011). The Kawa (river) model: Culturally responsive occupational therapy without borders. In F. Kronenberg, N. Pollard, & D. Sakellariou (Eds.), Occupational therapies without borders - volume 2: Towards an ecology of occupation-based practices (pp. 257–268). Edinburgh: Churchill Livingstone.
   Google Scholar
• Jones, D., & Penn, C. (10-11 July 2017). Training listeners to understand dysarthric speech. Paper presented at the 14th Neuropsychological Rehabilitation Special Interest Group of the World Federation of Neuro Rehabilitation Conference, Cape Town.
   Google Scholar
• Kagan, A., & LeBlanc, K. (2002). Motivating for infrastructure change: Toward a communicatively accessible, participation-based stroke care system for all those affected by aphasia. Journal of Communication Disorders, 35, 153–169. doi:10.1016/S0021-9924(02)00062-X
   PubMed Web of Science ®Google Scholar
• Kohnert, K. (2009). Cross-language generalization following treatment in bilingual speakers with aphasia: A review. Seminars in Speech and Language, 30, 174–186. doi:10.1055/s-0029-1225954
   PubMedGoogle Scholar
• Kutukdjian, G., Corbett, J., & Rivière, F. (2009). World culture report 2009: Investing in cultural diversity and intercultural dialogue. Paris: Unesco.
   Google Scholar
• 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, 139–163. doi:10.1080/02687038.2017.1396574
   Web of Science ®Google Scholar
• 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 Pathology, 15, 359–374. doi:10.3109/17549507.2012.752865
   PubMed Web of Science ®Google Scholar
• LaPointe, L. L. (1989). An ecological perspective on assessment and treatment of aphasia. Clinical Aphasiology, 18, 1–3. doi:10.13140/2.1.3544.6564
   Google Scholar
• Legg, C., & Penn, C. (2013). A stroke of misfortune: Cultural interpretations of aphasia in South Africa. Aphasiology, 27, 126–144. doi:10.1080/02687038.2012.684338
   Web of Science ®Google Scholar
• Legg, C., & Penn, C. (2014). The relevance of context in understanding the lived experience of aphasia: Lessons from South Africa. SIG 17 Perspectives on Global Issues in Communication Sciences and Related Disorders, 4, 4–11. doi:10.1044/gics4.1.4
   Google Scholar
• Longman, C. (2010). The role of friendship in four elderly populations who have and have not experienced stroke in Johannesburg, South Africa. Unpublished 4th year research report, University of the Witwatersrand, Johannesburg.
   Google Scholar
• Mayosi, B. M., Lawn, J. E., Van Niekerk, A., Bradshaw, D., Karim, S. S. A., & Coovadia, H. M.; Lancet South Africa team. (2012). Health in South Africa: Changes and challenges since 2009. The Lancet, 380, 2029–2043. doi:10.1016/S0140-6736(12)61814-5
   PubMed Web of Science ®Google Scholar
• Mdlalo, T., Flack, P., & Joubert, R. (2016). Are South African Speech-Language Therapists adequately equipped to assess English Additional Language (EAL) speakers who are from an indigenous linguistic and cultural background? A profile and exploration of the current situation. South African Journal of Communication Disorders, 63, 1–5. doi:10.4102/sajcd.v63i1.130
   Web of Science ®Google Scholar
• Mishler, E. (1984). The discourse of medicine: Dialectics of medical interviews. Norwood: Ablex.
   Google Scholar
• Mkhwanazi, Z. (2013). The development of an authentic assessment approach to aphasia in siSwati. Unpublished 4th year research report, University of the Witwatersrand, Johannesburg.
   Google Scholar
• Omotoso, K. O., & Koch, S. F. (2018). Assessing changes in social determinants of health inequalities in South Africa: A decomposition analysis. International Journal for Equity in Health, 17, 181. doi:10.1186/s12939-018-0885-y
   PubMed Web of Science ®Google Scholar
• Owolabi, M. O. (2011). Impact of stroke on health-related quality of life in diverse cultures: The Berlin-Ibadan multicenter international study. Health and Quality of Life Outcomes, 9, 81. doi:10.1186/1477-7525-9-81
   PubMed Web of Science ®Google Scholar
• Paul, N. A., & Sanders, G. F. (2010). Applying an ecological framework to education needs of communication partners of individuals with aphasia. Aphasiology, 24, 1095–1112. doi:10.1080/02687030903383720
   Web of Science ®Google Scholar
• Penn, C. (1993). Aphasia therapy in South Africa: Some pragmatic and personal perspectives. In A. Holland & M. Forbes (Eds.), Aphasia treatment: World perspectives (pp. 25–53). Boston: Springer.
   Google Scholar
• Penn, C. (2007). Cultural dimensions of aphasia: Adding diversity and flexibility to the equation. In M. Ball & J. Damico (Eds.), Clinical aphasiology: Future directions (pp. 221–244). New York: Psychology Press.
   Google Scholar
• Penn, C. (2012). Towards cultural aphasiology: Contextual models of service delivery in aphasia. In M. Gitterman, M. Goral, & L. Obler (Eds.), Aspects of multilingual aphasia (communication disorders across languages (pp. 292–306). Bristol: Multilingual Matters.
   Google Scholar
• Penn, C. (2014). Asking new questions and seeking new answers: The reality of aphasia practice in South Africa. Topics in Language Disorders, 34, 168–181. doi:10.1097/TLD.0000000000000012
   Web of Science ®Google Scholar
• Penn, C., & Armstrong, E. (2017). Intercultural aphasia: New models of understanding for indigenous populations. Aphasiology, 31, 563–594. doi:10.1080/02687038.2016.1213788
   Web of Science ®Google Scholar
• Penn, C., Armstrong, E., Brewer, K., Purves, B., McAllister, M., Hersh, D., ... Lewis, A. (2017). Decolonizing speech-language pathology practice in acquired neurogenic disorders. SIG 2 Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 2, 91–99. doi:10.1044/persp2.SIG2.91
   Google Scholar
• Penn, C., Frankel, T., Watermeyer, J., & Müller, M. (2009). Informed Consent and Aphasia: Evidence of pitfalls in the process. Aphasiology, 23, 3–32. doi:10.1080/02687030701521786
   Web of Science ®Google Scholar
• Penn, C., & Jones, D. (2007). “We all speak the same language, we all speak aphasic”: The evolution of therapy groups within a changing socio-political context. In R. J. Elman (Ed.), Group treatment of neurogenic disorders: The expert approach (pp. 195–211). San Diego: Plural Publishers.
   Google Scholar
• Penn, C., & Watermeyer, J. (2014). Features of cultural brokerage in interpreted child psychiatry interactions: A case of paradoxical practice. The Interpreter and Translator Trainer, 8, 354–373. doi:10.1080/1750399X.2014.968994
   Web of Science ®Google Scholar
• Penn, C., & Watermeyer, J. (2018). Communicating across cultures and languages in the health care setting: Voices of Care. London: Palgrave Macmillan.
   Google Scholar
• Posner, G. (2015). The experiences and needs of employed carers of stroke patients, working in home settings in South Africa. Unpublished Masters dissertation, University of the Witwatersrand, Johannesburg.
   Google Scholar
• Ramos, L. (2009). The conversational behaviours of four different elderly populations in Soweto. Unpublished 4th year research report, University of the Witwatersrand, Johannesburg.
   Google Scholar
• Razavi, A., & Staab, S. (2010). Underpaid and overworked: A cross-national perspective on care workers. International Labour Review, 149, 407–422. doi:10.1111/j.1564-913X.2010.00095.x
   Web of Science ®Google Scholar
• Roberts, T. J. (2018). Nursing home resident relationship types: What supports close relationships with peers & staff?. Journal of Clinical Nursing, 27, 4361–4372. doi:10.1111/jocn.14554
   PubMed Web of Science ®Google Scholar
• Roger, P., & Code, C. (2011). Lost in translation? Issues of content validity in interpreter-mediated aphasia assessments. International Journal of Speech-Language Pathology, 13, 61–73. doi:10.3109/17549507.2011.549241
   PubMed Web of Science ®Google Scholar
• Rose, M., Ferguson, A., Power, E., Togher, L., & Worrall, L. (2014). Aphasia rehabilitation in Australia: Current practices, challenges and future directions. International Journal of Speech-Language Pathology, 16, 169–180. doi:10.3109/17549507.2013.794474
   PubMed Web of Science ®Google Scholar
• Sacoor, T. (2017). Inter-cultural caregiving patterns in the Indian Muslim community. Unpublished 4th year research report, University of the Witwatersrand, Johannesburg.
   Google Scholar
• Schatz, E., Madhavan, S., Collinson, M., Gómez-Olivé, F. X., & Ralston, M. (2015). Dependent or productive? A new approach to understanding the social positioning of older South Africans through living arrangements. Research on Aging, 37, 581–605. doi:10.1177/0164027514545976
   PubMed Web of Science ®Google Scholar
• Simmons-Mackie, N., & Kagan, A. (2007). Application of the ICF in aphasia. Seminars in Speech and Language, 28, 244–253. doi:10.1055/s-2007-986521
   PubMedGoogle Scholar
• Simmons-Mackie, N. N., & Damico, J. S. (2007). Access and social inclusion in aphasia: Interactional principles and applications. Aphasiology, 21, 81–97. doi:10.1080/02687030600798311
   Web of Science ®Google Scholar
• Siyambalapitiya, S., & Davidson, B. (2015). Managing aphasia in bilingual and culturally and linguistically diverse individuals in an Australian context. Journal of Clinical Practice in Speech-Language Pathology, 1, 13–19.
   Google Scholar
• Southern, N. L. (2007). Mentoring for transformative learning: The importance of relationship in creating learning communities of care. Journal of Transformative Education, 5, 329–338. doi:10.1177/1541344607310576
   Google Scholar
• Tronto, J. (2014). Care Ethics. In M. Gibbons, D. Coole, E. Ellis, & K. Ferguson (Eds.), The encyclopedia of political thought (pp. 442–443). Hoboken: Wiley-Blackwell.
   Google Scholar
• Tronto, J. C. (2010). Creating caring institutions: Politics, plurality, and purpose. Ethics and Social Welfare, 4, 158–171. doi:10.1080/17496535.2010.484259
   Google Scholar
• United Nations, Department of Economic and Social Affairs, Population Division (2017a). International migrant stock: The 2017 revision. Retrieved from https://www.un.org/en/development/desa/population/migration/data/estimates2/estimates17.asp
   Google Scholar
• United Nations, Department of Economic and Social Affairs, Population Division (2017b). International migration report 2017: Highlights (ST/ESA/SER.A/404). Retrieved from https://www.un.org/en/development/desa/population/migration/publications/migrationreport/docs/MigrationReport2017_Highlights.pdf
   Google Scholar
• Vickers, C. P. (2010). Social networks after the onset of aphasia: The impact of aphasia group attendance. Aphasiology, 24, 902–913. doi:10.1080/02687030903438532
   Web of Science ®Google Scholar
• Wallace, G. L. (2017). Multicultural neurogenics: A call and response to embrace global issues in neurogenics. SIG 2 Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 2, 142–145. doi:10.1044/persp2.SIG2.142
   Google Scholar
• Worrall, L. (2018). The seven habits of highly effective aphasia therapists. Aphasiology, 32, 248. doi:10.1080/02687038.2018.1487022
   Google Scholar
• Worrall, L., Davidson, B., Howe, T., & Rose, T. (2007). Clients as teachers: Two aphasia groups at the University of Queensland. In R. J. Elman (Ed.), Group treatment of neurogenic disorders: The expert approach (pp. 127–144). San Diego: Plural Publishers.
   Google Scholar
• 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, 309–322. doi:10.1080/02687038.2010.508530
   Web of Science ®Google Scholar
• Wylie, K., McAllister, L., Davidson, B., & Marshall, J. (2013). Changing practice: Implications of the World Report on Disability for responding to communication disability in under-served populations. International Journal of Speech-Language Pathology, 15, 1–13. doi:10.3109/17549507.2012.745164
   PubMed Web of Science ®Google Scholar