Spreading the word about communication difficulties after ...iaha.com.au/wp-content/uploads/2013/12/1430... · Spreading the word about communication difficulties after stroke and

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.