spreading the word about communication difficulties after...
TRANSCRIPT
Spreading the word about communication
difficulties after stroke and traumatic
brain injury in Indigenous Australians:
An introduction to Missing Voices.
Deborah Hersh, Speech Pathology, Edith Cowan University
On behalf of the Missing Voices team:
Beth Armstrong, Judith Katzenellenbogen, Julianne Coffin,
Sandra Thompson, Colleen Hayward, Deborah Woods, Leon
Flicker, Natalie Ciccone, Meaghan McAllister, Belinda
Goodale, and Susan Booth.
The Missing Voices
Research Team
The Missing Voices research
team Professor Elizabeth Armstrong, Speech Pathology, Edith Cowan
University
Associate Professor Deborah Hersh, Speech Pathology, Edith Cowan University
Associate Professor Judith Katzenellenbogen, Combined Universities Centre for Rural Health/UWA
Associate Professor Julianne Coffin, TICHR & GRAMS
Professor Sandra Thompson, Combined Universities Centre for Rural Health/UWA
Professor Colleen Hayward, Kurongkurl Katitjin, Edith Cowan University
Deborah Woods, Geraldton Aboriginal Medical Service
Professor Leon Flicker, Royal Perth Hospital/University of Western Australia
Dr Natalie Ciccone, Speech Pathology, Edith Cowan University
Meaghan McAllister, Speech Pathologist and Project Coordinator, Edith Cowan University
Belinda Goodale, Speech Pathologist and RA, Combined Universities Centre for Rural Health/UWA
Susan Booth, Speech Pathologist and RA, Edith Cowan University
Funding
Project funded by National Health & Medical
Research Council 2013-2015
Follows funding of a pilot study by the Australian
Institute of Aboriginal and Torres Strait Islander
Studies (AIATSIS) 2010-2011
Voices… words… language…
culture… connection… identity
What happens when speech or
language is lost/impaired?
Community consequences…
Loss of language in a verbal-based culture
Elders of community: “living libraries”
◦ (Juli Coffin)
Issues around cultural security: preserving
stories, wisdom and learning
Important need to help support the
communication of people with ACD
Plan for Spreading the word
presentation
Background
◦ Acquired communication disorder (ACD)
◦ Current situation for Aboriginal People following stroke
or traumatic brain injury (TBI)
Missing Voices project and research aims
Methodological approach
Where we are so far…
Where we are aiming…
Types of Communication Problems
Aphasia
Cognitive Communication Disorders after
Traumatic Brain Injury
Dysarthria
Aphasia – areas of impairment
Aphasia
Verbal expression
Comprehension of language
Reading
Writing
Calculation
Gesture
Cognitive Communication Disorder
Cog-comm
Difficulty maintaining attention
Difficulty managing social
situations
Be inappropriate or unable to cope with complexity
Talk too much or too little
Lack of awareness or
insight
Difficulty remembering
Dysarthria – speech/intelligibility
Dysarthria
Slow speech
Change in voice quality
Fatigue
Poor control of intonation
Low volume
Slurred speech
Stroke & TBI
COMMUNICATION
DISORDERS
Almost half the people admitted to hospital with acute stroke have some level of communication difficulty
O’Halloran, Worrall & Hickson, 2012
Up to a third of patients with a first-ever stroke will experience aphasia
Up to 25,000 Australians with stroke will have an ACD
approximately 60% of these people still have aphasia at 12 months.
Stroke and TBI for Indigenous
Australians Incidence rate of stroke for Indigenous Australians
up to 3 times higher than for non-Indigenous
Australians – felt to be underestimate
(AIHW, 2008; Katzenellenbogen et al., 2011)
Indigenous stroke patients aged 18-64 had a
threefold chance of dying or being dependent
at discharge
(Kilkenny et al., 2012)
Traumatic brain injury (TBI) has an incidence rate of 2.3%
compared to 0.7% in the non-Indigenous population and is
up to 21 times higher when caused by assault.(Gauld, Smith & Bowen, 2009; Jamieson, Harrison & Berry, 2008)
Age-sex pyramid of incident stroke cases,
by Indigenous status: Western Australia 1997-2002
75-84
65-74
55-64
45-54
35-44
25-34
15-24
-30 -20 -10 0 10 20 30
15-24
25-34
35-44
45-54
55-64
65-74
75-84
-30 -20 -10 0 10 20 30
Aboriginal Non-AboriginalAge group Age group
Males
n=185
Females
n=184
% people % people
Males
n=4,954
Females
n=4,197
Katzenellenbogen JM, et al. Stroke 2011;42:1515-21
Indigenous Non-Indigenous
Age-specific incidence of stroke,
by Indigenous status: WA 1997-2002
0
400
800
1200
1600
15-34 35-54 55-65 65-74 15-34 35-54 55-65 65-74
MALES FEMALES
Ra
tes
pe
r 1
00
,00
0
non-Aboriginal Aboriginal
Katzenellenbogen JM, et al. Stroke 2011;42:1515-21
Age-specific rate ratio
3.2 5.7 4.1 2.4
Age-specific rate ratio
3.4 7.4 5.6 3.4
Current situation on rehabilitation
experiences Very little published
Indigenous Australians with ACD are:
◦ Under-identified
◦Often lost in the system
◦ Have low service use
◦ Poor follow up
(Armstrong et al., 2012)
Main issues
General health issues
Socio-economic status
Distance from speech pathology service
Service ‘not for us’
Historical reasons
Language issues
Lack of knowledge of aphasia
Service not what people want◦ Appointments, unfamiliar location, therapist
gender,
Cultural attitudes/beliefs
Missing voices project and research
aims To investigate the extent and impact of ACD in urban and
rural Western Australian Indigenous populations following stroke or TBI
To develop and validate a culturally appropriate communication disorder screening/ assessment tool for use by health professionals working with this population
To explore how Indigenous people, and their family members experience ACDs and rehabilitation services after stroke or TBI
To understand health professionals’ views of diagnosis, treatment and support for Indigenous people with ACD after stroke or TBI
To develop potential alternative service delivery models that are accessible and culturally appropriate
Methods
Analysis of Linked Data
Analyse Patient Information Record System Data (Communicare or other AMS systems)
File audits: rural hospital (21), Perth (30), AMS (5 files approx)
Interviewing:◦ People with ACD and their families
◦ Aboriginal Health Professionals
◦ Speech pathologists and GPs – Aboriginal/Non-Aboriginal
Screening tool development:◦ Run focus groups with AHWs to gauge what would be
appropriate
◦ Validate the tool on 30 people with stroke or TBI
Proposed sites
Perth
Geraldton
Kalgoorlie
Albany
The Kimberley
Where we are so far…
Screening tool:
◦ Review of screening tools currently available
◦ Focus groups run with Aboriginal Health Workers in Perth and Geraldton
◦ Development of a draft tool and feedback
Forming the Indigenous Reference Group
Speech Pathology Interviews
Liaison with Aboriginal Health Services
◦ Geraldton, Perth, Albany, Kalgoorlie
File audits on speech pathology files
Training of interviewers and capacity
building Two day training program offered:
◦ Exploring ACD
◦ Interviewing skills
◦ Interviews adapted for people with
communication disorders using “supported
conversation for aphasia” (SCA) (Kagan,
1998) combined with yarning as a research
tool (Bessarab & Ng’andu, 2010)
Interviewer training
Aboriginal Research Assistants have received
training in Geraldton
Capacity building and awareness-raising
amongst health workers in Geraldton
SCA techniques
Acknowledgment of competence◦ implicit through humour, tone of voice, natural gesture
◦ explicit – “I know you know”.
Revealing competence◦ ensuring comprehension through the range of supports –
writing key words, interactive drawing, resource material etc
◦ ensuring the participants can respond – providing yes/no options, extra time, different modality options for response; verifying responses etc
Simultaneous use of these techniques to encourage the natural feel and flow of conversation
Yarning as a research toolBessarab & Ng’andu (2010)
Yarning:
◦ Indigenous cultural form of conversation, often informal chat
◦ Reciprocal, mutual
◦ Transfer of knowledge often through stories
◦ Interwoven with cultural and historical understandings
“Yarning in a semi-structured interview is an informal and relaxed discussion through which both the researcher and participant journey together visiting places and topics of interest relevant to the research study. Yarning is a process that requires the researcher to develop and build a relationship that is accountable to Indigenous people participating in the research.” (p.38)
Where we are aiming…
Continuing to develop links across all sites
To start interviews with people with ACD and families over the next few months
To continue speech pathologist and GP interviews
Commence AHW interviews
To analyse the linked data
Continue file audits – already begun process in Albany and Geraldton
To pilot the screening tool…
New understandings…
We are hoping to start the process of:
◦ Understanding the stories of Aboriginal people with ACD
◦ Using those stories to inform services
◦ To enable Aboriginal Health Professionals and others to identify who has an ACD and match them to the right help
◦ To work with communities to develop new service models in the light of our findings
◦ Raise awareness and building capacity within Aboriginal communities to address ACD
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.
Australian Institute of Health and Welfare. (2011). The health and welfare of Australia’s Aboriginal and Torres Strait Islander people: An overview 2011. Cat. no. IHW 42. Canberra: AIHW.
Australian Institute of Health and Welfare 2013. Stroke and its management in Australia: an update. Cardiovascular disease series no. 37. Cat. no. CVD 61. Canberra: AIHW.
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.
Engelter, S. T., Gostynski, M., Papa, S., Frei, M., Born, C., Adjacic-Gross, V., Gultzwiller, F., & Lyrer, P. A. (2006). Epidemiology of aphasia attributable to first Ischemic stroke: Incidence, severity, fluency, etiology, and thrombolysis. Stroke, 37(6), 1379-1384.
Gauld, S., Smith, S., & Bowen, R. (2009). Improving community- based rehabilitation for Aboriginal and Torres Strait Islander Queenslanders with acquired brain injury: Identification of key dimensions to enhance service suitability. Paper presented at the Rural: Health the place to be. The 10th National Rural Health Conference, May 2009, Cairns, Qld.
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.
Kagan, A. (1998). Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology, 12/9, 816-830.
Katzenellenbogen, J., Vos, T., Somerford, P., Begg, S., Semmens. J. B., & Codde, J. P. (2011). Burden of stroke in Indigenous Western Australians. Stroke, 42, 1515-1521.
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, 164-171.