Townsville Rural Stroke Outreach Service

1. Townsville Rural Stroke Outreach Service Development of Educational Material for Aboriginal and Torres Strait Islander Patients Living with Stroke Ian Meade

2. Aboriginal Stroke Project (National Stroke Foundation 2003) What is stroke? Mainly Aboriginal people don’t know what stroke is, so it is a lot of learning about the problem. When it first happens they panic, most think it is a heart attack. How do we handle stroke? (Community leader – Geraldton)

3. Aboriginal Stroke Project (National Stroke Foundation 2003) ‘Stroke Survivors consistently stated, that the provision of information, support and education is critical in ensuring a positive stroke experience’

4. Aim • To review available stroke information • Determine how health information is best understood by Aboriginal and Torres Strait Islanders • To develop user friendly, culturally appropriate, stroke information • Facilitate secondary prevention and behavioural change

5. Process Design by Aboriginal and Torres Strait Islanders graphic artist Cyclical review by indigenous liaison officers, health workers and local Aboriginal and Torres Strait Islanders patients/families Expert review of content Development of education resource by multidisciplinary team Pilot and Evaluation

6. Education Booklet Design

7. Booklet Design Elders meaning of turtle: • They live for a long time • Have much Wisdom • Are slow and steady (slow gains)  • Move at there own pace • Associated with water - motion • Spiritual meanings - turtle's shell for protection, withdraw if they want to and come out when they are ready and is associated with the moon cycles (sea people) • They have a lot of patience

8. Turtles and Stroke • That people will withdraw and become depressed but do eventually come back out again to face the world in their own time, and patience is needed to get through the healing process. (Indigenous Child Health Coordinator)

9. Turtles and Stroke • Water / sea, to be seen as cleansing, to be cleansed from the inside out.  As having a stroke is not the time of the end but a new beginning and the water in and around the turtle can be seen to help refresh and rejuvenate the spirit not only to the body but also to the soul (Graphic Designer)

10. What was wanted in a resource?Tools to engage the reader • Use pictures with black faces • Comics, cartoons and stories • Clear and simple English • Avoiding medical jargon • Font not presented as a government document • Durable

11. Strategy - Layers of information • Content presented through different visual mediums • Limited literacy skills – key points • Positive message -there is life after stroke

12. Positive Message Gotta have a strong mind, a will to do things, not lay back and let others take charge of your life. That’s what I’d like to say... you know. Be determined to get out of that rut and be strong in what you do! Male stroke survivor from Palm Island

13. Content • Seeing the patient as a whole person • Focus on the Health team providing information rather then discipline specific information • Highlight the importance of patients family/friends • Culturally appropriate language

14. Initial draft A. What’s wrong love? B. Well… it’s been a long time since we’ve been alone together in the same bed and I’m a bit anxious that you will have another stroke if we have sex tonight A. Yeah, I’m a bit scared too, but I have been reading a sheet about resuming sex after stroke that says that there is no link between having sex and having another stroke. B. That sounds promising A. Talking about what we are thinking and feeling can also help. B. Like everything else since your stroke, this could take some time as we work through our thoughts and feelings. A. I’m feeling pretty good. How about we start with a hug and kiss and see what happens after that. B. I think giving me a back massage would be better.

15. First Draft 1pm – Indigenous Liaison Offices started laughing

16. First Draft 2.30pm – Indigenous Liaison Officers still laughing – commenced re-write

17. End Result A – What you reckon, you coming to bed? B- No, I’m scared you might have another stroke A- Yeah but they said its OK to have a bit of fun B- Well, come here then eh?

18. Feedback from stroke booklet • “I have a grade 4 education, able to understand all words written (except how do you say hypertension?)” ( Doomadgee lady ) • “Will go and see my doctor regarding my high blood pressure” (Mt Isa man ) • “Will talk to the dietician regarding losing weight” (diabetic)

19. Feedback from stroke booklet • “I want to take the booklet home, as I think my brother in law, has had a stroke” ( relative ) • “Now I understand what stroke is - blockage or bursting of blood vessels in the brain” ( new Palm Island male health worker)

20. Family Feedback Congratulations on a very good resource for stroke victims and their family. I found the book very helpful in explaining to my nephews and niece what “stroke” meant, how this will impact on their dad’s and their lives and how the family could help in Dad leading “ An Ordinary Life” beyond his stroke.

21. The Journey Continues • 50 copies printed – distributed to NSW, NT, Victoria and Qld • Evaluation – positive ++ • 400 more copies printed with funding from the Qld Rural Stroke Outreach Service • National Stroke Foundation supportive • Journey After Spinal Injury

22. Recovery After Stroke • Mt Isa Hospital • Mareeba Hospital • Cairns Hospital • P.A. Hospital • Ipswich Hospital • Royal Darwin Hospital , N.T. • Swan District Hospital, WA • Campbelltown Hospital, NSW • Queens Elizabeth Hospital, Vic • Mary Rural Referral Hospital, NSW • Wodonga Campus, Vic • Cardinia Casey Community Rehab. Service, NSW

23. The Journey Continues • Patients and families with limited English • Multiple morbidity patients – eg. Chronic kidney disease • Children • Resource for multidisciplinary health workers in remote and rural communities • Acquired Brain Injury Association Outreach Service Qld and STEPS

24. Where to from here! If you work with indigenous patients the Townsville Rural Stroke Outreach Service can provide your unit with a copy of the booklet ‘Journey After Stroke’ Also available ‘Journey After Spinal Injury’ booklet Please contact Ian_Meade@health.qld.gov.au

26. References • The Health and Welfare of Australia's Aboriginal and Torres Strait Islander Peoples, 2005 available at http://www.abs.gov.au/ausstats/abs@.nsf/mf/4704.0/ (accessed 12/4/08) • Richards, B and Hill, V (1985) Success or failure in rehabilitation of Aborigines in Queensland. Conference paper: Far East and South Pacific International Spinal Conference (FESPIC) Mt Gravatt Brisbane • Aldridge, M. (2004). Writing and designing readable patient education materials. Nephrology Nursing Journal, 31(4), 373-377. • Bond, C (2005). A culture of ill health: public health of Aboriginality? eMJA Australia. 183 (1), 39-41. • Calgaret, T. (2007). Enhancing the planning and delivery of services to Aboriginal people in Western Australia. [Electronic version]. Perth: Department for Child Protection. • Catholic Education Office. (2008). Important facts to remember when teaching Aboriginal studies. Retrieved 19 March 2008 from Aboriginal Studies Across the Curriculum site: http://www.teachers.ash.org.au/wattle/abstuds1/impfacts.html • Protocols for consultation and negotiation with Aboriginal people Department of Aboriginal and Torres Strait Islander Policy and Development • National Stroke Unit Program Aboriginal Stroke Project National Stroke Foundation 2003 • “A Cancer Journey” (Brochure, booklet) Queensland Health Queensland Government

27. References “Give it up and live it Up 2008 make a choice Create a Change” (Calendar) joint project by Queensland Health and the Cancer Council Queensland Zhao, Y and Dempsey (2006) Causes of inequalities in life expectancy between Indigenous and non-indigenous people in the Northern Territory, 1981-2000: a decomposition analysis MJA: 184 (10):490-494 City of Sydney. (2005). Aboriginal and Torres Strait Islander protocols. Sydney: City of Sydney Trudgen, R.I. Why Warrior Lie down and Die. 5th printing (with corrections) Adelaide 2003 Open Book Print Durie, M. (2004). An Indigenous model of health promotion. Health Promotion Journal of Australia. 15(3), 181-185. Hoffmann, T & Worrall, L. (2004). Designing effective written health education materials: Considerations for health professionals. Disability and Rehabilitation, 26 (19), 1166 – 1173. http://www.wired.org.au/crh/ partnerships.htm last accessed 29/2/08 \partnerships when working with people in remote communities. Robyn Glynn Centre for Remote Health Tsey, K. (1997). Aboriginal self-determination education and health: towards a radical change in attitudes to education. Australian and New Zealand Journal of Public Health - 21(1), 77-83.