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Study Protocol: Missing Voices – Communication Difficulties after Stroke and Traumatic Brain Injury in Aboriginal Australians

Published online by Cambridge University Press:  20 July 2015

Elizabeth Armstrong ,
Deborah Hersh ,
Judith M. Katzenellenbogen ,
Juli Coffin ,
Sandra C. Thompson ,
Natalie Ciccone ,
Colleen Hayward ,
Leon Flicker ,
Deborah Woods  and
Meaghan McAllister
Elizabeth Armstrong*
Affiliation:
School of Psychology & Social Science, Edith Cowan University, Perth, Western Australia, Australia
Deborah Hersh
Affiliation:
School of Psychology & Social Science, Edith Cowan University, Perth, Western Australia, Australia
Judith M. Katzenellenbogen
Affiliation:
Western Australian Centre for Rural Health, University of Western Australia, Geraldton, Western Australia, Australia
Juli Coffin
Affiliation:
Telethon Institute for Child Health Research, University of Western Australia, Perth, Western Australia, Australia Geraldton Regional Aboriginal Medical Service, Geraldton, Western Australia, Australia
Sandra C. Thompson
Affiliation:
Western Australian Centre for Rural Health, University of Western Australia, Geraldton, Western Australia, Australia
Natalie Ciccone
Affiliation:
School of Psychology & Social Science, Edith Cowan University, Perth, Western Australia, Australia
Colleen Hayward
Affiliation:
Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research, Edith Cowan University, Perth, Western Australia, Australia
Leon Flicker
Affiliation:
Centre for Medical Research, University of Western Australia, Perth, Western Australia, Australia
Deborah Woods
Affiliation:
Geraldton Regional Aboriginal Medical Service, Geraldton, Western Australia, Australia
Meaghan McAllister
Affiliation:
School of Psychology & Social Science, Edith Cowan University, Perth, Western Australia, Australia
*
Address for correspondence: Elizabeth Armstrong, School of Psychology & Social Science, Edith Cowan University 270 Joondalup Drive, Joondalup, Western Australia, 6025. Phone: 61 8 6304 2769. E-mail: [email protected].
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Abstract

Background: Aboriginal and Torres Strait Islander Australians experience stroke and traumatic brain injury (TBI) with much greater frequency than non-Aboriginal Australians. Acquired communication disorders (ACD) can result from these conditions and can significantly impact everyday life. Yet few Aboriginal people access rehabilitation services and little is known about Aboriginal peoples’ experiences of ACD. This paper describes the protocol surrounding a study that aims to explore the extent and impact of ACD in Western Australian Aboriginal populations following stroke or TBI and develop a culturally appropriate screening tool for ACD and accessible and culturally appropriate service delivery models.

Method/Design: The 3-year, mixed methods study is being conducted in metropolitan Perth and five regional centres in Western Australia. Situated within an Aboriginal research framework, methods include an analysis of linked routine hospital admission data and retrospective file audits, development of a screening tool for ACD, interviews with people with ACD, their families, and health professionals, and drafting of alternative service delivery models.

Discussion: This study will address the extent of ACD in Aboriginal populations and document challenges for Aboriginal people in accessing speech pathology services. Documenting the burden and impact of ACD within a culturally secure framework is a forerunner to developing better ways to address the problems faced by Aboriginal people with ACD and their families. This will in turn increase the likelihood that Aboriginal people with ACD will be diagnosed and referred to professional support to improve their communication, quality of life and functioning within the family and community context.

Keywords

Aboriginalstroketraumatic brain injuryacquired communication disorderrehabilitationspeech pathologyhealth workerAustraliaaphasiadysarthria
Type
Research Protocol
Information
Brain Impairment , Volume 16 , Issue 2 , September 2015 , pp. 145 - 156
Copyright
Copyright © Australasian Society for the Study of Brain Impairment 2015 

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References

Armstrong, E., Hersh, D., Hayward, C., Fraser, J., & Brown, M. (2012). Living with aphasia: Three Indigenous Australian stories. International Journal of Speech Language Pathology, 14 (3), 271–280.Google Scholar
Armstrong, E., Hersh, D., Hayward, C., & Fraser, J. (2015). Communication disorders after stroke in Aboriginal Australians. Disability and Rehabilitation, 37 (16), 1462–1469.Google Scholar
Australian Health Ministers Advisory Council. (2011). Aboriginal and Torres Strait Islander Health Performance Framework Report 2010. Canberra, ACT: AHMAC.Google Scholar
Australian Institute of Health and Welfare. (2004). Heart, Stroke and Vascular Disease - Australian Facts 2004. Canberra, ACT: AIHW.Google Scholar
Australian Institute of Health and Welfare. (2008). Indigenous and Torres Strait Islander Health Performance Framework Report 2008: Detailed Analyses. Canberra, ACT: AIHW.Google Scholar
Bessarab, D., & Ng’andu, B. (2010). Yarning about yarning as a legitimate method in Indigenous research. International Journal of Critical Indigenous Studies, 3 (1), 37–50.Google Scholar
Brameld, K. K., Holman, D., Thomas, M., & Bass, J. (1999). Use of a state data bank to measure incidence and prevalence of a chronic disease: End-stage renal failure. American Journal of Kidney Disease, 34 (6), 1033–1039.Google Scholar
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.Google Scholar
Cass, A., Lowell, A., Christie, M., Snelling, P., Flack, M., Marrnganyin, B., & Brown, I. (2002) Sharing the true stories: Improving communication between Aboriginal patients and healthcare workers. Medical Journal of Australia, 176 (10), 466–470.Google Scholar
Coffin, J. (2007) Rising to the challenge in Aboriginal health by creating cultural security. Aboriginal and Islander Health Worker Journal, 31 (3), 22–24.Google Scholar
Council of Australian Governments (2008). National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes. Canberra, ACT: COAG.Google Scholar
Cruice, M., Worrall, L., & Hickson, L. (2011). Reporting on psychological well-being of older adults with chronic aphasia in the context of unaffected peers. Disability and Rehabilitation, 33 (3), 219–228.Google Scholar
Dalemans, R., Wade, D.T., van den Heuve, W.J.A., & de Wit, L.P. (2009). Facilitating the participation of people with aphasia in research: A description of strategies. Clinical Rehabilitation, 23, 948–959.Google Scholar
Davidson, P., Halcomb, E., & Gholizadeh, L. (2010). Focus groups in health research. In Liamputtong, P. (Ed.), Research Methods in Health: Foundations for Evidence-Based Practice (pp.61–76). South Melbourne, Victoria: Oxford University Press.Google Scholar
Dept. of Health of Western Australia. (2011). Epidemiology of Injury in Western Australia 2000–2008 Report. Perth, Australia: Dept. of Health of Western Australia.Google Scholar
Dingwall, K.M., & Cairney, S. (2010). Psychological and cognitive assessments of Indigenous Australians. Australian & New Zealand Journal of Psychiatry, 44, 20–30.Google Scholar
Durey, A., Thompson, S., & Wood, M. (2012). Time to bring down the twin towers in poor Aboriginal hospital care: Addressing institutional racism and misunderstandings in communication. International Medicine Journal, 42 (1), 17–22.Google Scholar
Enderby, P., & Crow, E. (1996). Frenchay Aphasia Screening Test: Validity and comparability. Disability and Rehabilitation, 18 (5), 238–240.CrossRefGoogle ScholarPubMed
Engelter, S. T., Gostynski, M., Papa, S., Frei, M., Born, C., Ajdacic-Gross, V., . . . Lyrer, P.A. (2006). Epidemiology of aphasia attributable to first ischemic stroke: Incidence, severity, fluency, etiology, and thrombolysis. Stroke, 37 (6), 1379–1384.Google Scholar
Faux, S., Ahmat, J., Bailey, J., Kesper, D., Crotty, M., Pollack, M., & Olver, J. (2009). Stroke rehabilitation down under: Can Rupert Murdoch, Crocodile Dundee and an Aboriginal elder expect the same services and care? Topics in Stroke Rehabilitation, 16 (1), 1–10.Google Scholar
Gauld, S., Smith, S., & Kendall, M.B. (2011). Using participatory action research in community-based rehabilitation for people with acquired brain injury: From service provision to partnership with Aboriginal communities. Disability and Rehabilitation, 33 (19–20), 1901–1911.Google Scholar
Helander, E. P. (2007). The origins of community based rehabilitation. Asia Pacific Disability & Rehabilitation Journal, 18, 3–32.Google Scholar
Hersh, D., Armstrong, E., & Bourke, N. (2015a). A narrative analysis of a speech pathologist's work with Indigenous Australians with acquired communication disorders. Disability and Rehabilitation, 37, 33–40.Google Scholar
Hersh, D., Armstrong, E., Panak, V., & Coombes, J. (2015b). Speech-language pathology practices with Indigenous Australians with acquired communication disorders. International Journal of Speech Language Pathology, 17 (1), 63–73.Google Scholar
Hilari, K. (2011). The impact of stroke: Are people with aphasia different to those without? Disability and Rehabilitation, 33 (3), 211–218.Google Scholar
Hilari, K., & Byng, S. (2009). Health related quality of life in people with severe aphasia. International Journal of Language & Communication Disorders, 44 (2), 193–205.Google Scholar
Holman, C.D., Bass, A.J., Rouse, I.L., & Hobbs, M.S. (1999). Population-based linkage of health records in Western Australia: Development of a health services research linked database. Australian and New Zealand Journal of Public Health, 23 (5), 453–459.Google Scholar
Jamieson, L., Harrison, J.E., & Berry, J.G. (2008). Hospitalisation for head injury due to assault among Indigenous and non-Indigenous Australians, July 1999–June 2005. Medical Journal of Australia, 188 (10), 576–579.Google Scholar
Katzenellenbogen, J.S., Vos, T., Somerford, P., Begg, S., Semmens, J.B., & Codde, J.P (2010). Burden of stroke in Indigenous Western Australians: A study using data linkage. Stroke, 42, 1515–1521.Google Scholar
Kauhanen, M.L., Korpelainen, J.T., Hiltunen, P., Maata, R., Mononen, H., Brusin, E. . . . Myllylä, V.V. (2006). Aphasia, depression, and non-verbal cognitive impairment in ischaemic stroke. Cerebrovascular Diseases, 10, 455–461.CrossRefGoogle Scholar
Kilkenny, M.F., Harris, D.M., Ritchie, E.A., Price, C., & Cadilhac, D. (2013). Hospital management and outcomes of stroke in Indigenous Australians: Evidence from the 2009 Acute Care National Stroke Audit. International Journal of Stroke, 8 (3), 164–171.Google Scholar
Landau, J., & Hissett, J. (2008). Mild traumatic brain injury: Impact on identity and ambiguous loss in the in the family. Families, Systems, & Health, 26 (1), 69–85.Google Scholar
Laycock, A., Walker, D., Harrison, N., & Brands, J. (2011). Researching Indigenous Health: A Practical Guide for Researchers. Carlton South, Vic: The Lowitja Institute.Google Scholar
Liamputtong, P. (2009) Qualitative Research Methods (3rd ed.). South Melbourne, Vic: Oxford University Press.Google Scholar
Liaw, S.T., Lau, P., Pyett, P., Furler, J., Burchill, M., Rowley, K., & Kelaher, M. (2011). Successful chronic disease care for Aboriginal Australians requires cultural competence. Australian and New Zealand Journal of Public Health, 35 (3), 238–248.Google Scholar
LoGiudice, D., Smith, K., Lautenschlager, N.T., Almeida, O.P., Atkinson, D., Flicker, L. (2006). Kimberley indigenous cognitive assessment tool (KICA): Development of a cognitive assessment tool for older indigenous Australians. International Psychogeriatrics, 18 (2), 269–280.Google Scholar
Lomas, J., Pickard, L., Bester, S., Elbard, H., Finlayson, A., & Zoghaib, C. (1989). The communicative effectiveness index: Development and psychometric evaluation of a functional communication measure for adult aphasia. Journal of Speech & Hearing Disorders, 54, 113–124.Google Scholar
Lowell, A., Maypilama, E., Yikaniwuy, S., Rrapa, E., Williams, R., & Dunn, S. (2012). Hiding the story: Indigenous consumer concerns about communication related to chronic disease in one remote region of Australia. International Journal of Speech Language Pathology, 14 (3), 200–208.Google Scholar
Luck, A., & Rose, M. (2007) Interviewing people with aphasia. Insights into methods adjustments from a pilot study. Aphasiology, 21 (2), 208–224.Google Scholar
McLellan, K., McCann, C., & Worrall, L. (2011) Maori with aphasia: A people without a voice? New Zealand Medical Journal, 124, 1–10.Google Scholar
McLellan, K., McCann, C. M., Worrall, L.E., & Harwood, M.L.M. (2014). “For Maori language is precious. And without it we are a bit lost”: Maori experiences of aphasia. Aphasiology, 28, 453–470.Google Scholar
National Health, & Medical Research Council. (2003). NH&MRC Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research. Canberra, ACT: Australian Government.Google Scholar
National Stroke Foundation (2004) National Stroke Unit Program: Indigenous Stroke Project. Melbourne, Victoria: National Stroke Foundation.Google Scholar
Purdy, N., Dudgeon, P., & Walker, R. (Eds.). (2010). Working together: Aboriginal and Torres Strait Islander Mental Health and Wellbeing Principles and Practice. Canberra, ACT: Australian Government.Google Scholar
Quan, H., Sundararajan, V., Halfon, P., Fong, A., Burnand, B., Luthi, J-C. . . . Ghali, W.A. (2005). Coding algorithms for defining comorbidities in ICD-9-CM and ICD-10 administrative data. Med Care, 43 (11), 1130–1139. Retrieved from http://www.jstor.org/stable/3768193.Google Scholar
Queensland Health (2010). Journey After Stroke. Queensland, Australia, Government of Queensland. Retrieved from http://strokefoundation.com.au/site/media/JourneyAfterStroke_indigenous.pdf.Google Scholar
Shahid, S., Bessarab, D., Howat, P., & Thompson, S.C. (2009). Exploration of the beliefs and experiences of Indigenous people with cancer in Western Australia: A methodology to acknowledge cultural difference and build understanding. BMC Medical Research Methodology, 9 (60), 1–8.Google Scholar
Shahid, S., Finn, L., Bessarab, D., & Thompson, S.C. (2011). Nowhere to room? nobody told them”: Logistical and cultural impediments to Aboriginal peoples’ participation in cancer treatment. Australian Health Review, 3, 235–241.Google Scholar
Shahid, S., & Thompson, S.C. (2009). An overview of Indigenous cancer and their beliefs around the disease, a cross-country comparison: Australia, Canada, New Zealand and the United States. Australian and New Zealand Journal of Public Health, 33, 109–118.Google Scholar
Speech Pathology Australia (2014) Submission into the Inquiry into the Prevalence of Different Types of Speech, Language, and Communication Disorders and Speech Pathology Services in Australia. Melbourne, Vic.: Speech Pathology Australia.Google Scholar
Tate, R.L., McDonald, S., & Lulham, J.L. (1998). Traumatic brain injury: Severity of injury and outcome in an Australian population. Journal of Australian and New Zealand Public Health, 22, 11–15.Google Scholar
Taylor, S.J., & Bogdan, R. (1994). Qualitative research methods and community living. In Hayden, M. F., & Avery, B. H. (Eds.), Challenges for Service System in Transition (pp. 43–63). Baltimore: Paul H. Brookes Publishing Company.Google Scholar
Taylor, K.P., Thompson, S.C., Smith, J.S., Dimer, L., Ali, M., & Wood, M.M. (2009). Exploring the impact of an Aboriginal Health Worker on hospitalised Aboriginal experiences: Lessons from cardiology. Australian Health Review, 33 (4), 549–557.Google Scholar
Temkin, N., Corrigan, J.D., Dikmen, S.S., Machamer, J. (2009). Social functioning after traumatic brain injury. Journal of Head Trauma Rehabilitation, 24 (6), 460–467.Google Scholar
Thrift, A.G., Cadilhac, D., & Eades, S. (2011). Excess risk of stroke in Australia's indigenous and torres strait islander populations. Stroke, 42, 1501–1502.Google Scholar
Vos, T., Barker, B., Begg, S., Stanley, S., & Lopez, A. (2009). Burden of disease and injury in Aboriginal and Torres Strait Islander Peoples: The Indigenous health gap. International Journal of Epidemiology, 38, 470–477.CrossRefGoogle ScholarPubMed
Zabiela, C., Williams, C., & Leitao, S. (2007). Service delivery in rural, remote and regional speech pathology. ACQuiring Knowledge in Speech, Language and Hearing, 9 (2), 39–47.Google Scholar