11:15am Murrumbidgee Room presentation by James Fitzpatrick on Foetal Alcohol Spectrum Disorder.

1. Dr James Fitzpatrick Dr Martyn Symons
Kaashifah Bruce Bree Wagner
Maureen Carter June Oscar
June Councillor Roz Walker
Glenn Pearson David Tucker
Making FASD History
FASD diagnosis, prevention and interventions – evaluating
and scaling up successful models in remote Australian
communities
in partnership with the
Hedland FASD Network
and Hedland Community
Reference Group

8. Alcohol is toxic to the brain-
especially in utero

9. FASD: Economic and social impact
• FASD is the leading causes of preventable intellectual
disability
• Costs up to $5.4 billion per year in the US (Popova et al,
2013)
• Lifetime cost (service use and loss of productivity) for
FAS US$2.5 million (Popova et al, 2011)
• For any diagnosis on the FASD spectrum US$22,000 per
year per person(Popova et al, 2011)
• Significantly, it is estimated that 25-40% of juveniles in
detention have a diagnosis on the FASD spectrum
(Ospina & Denett, 2013; Bower et al 2017)

10. Brain regions targeted

11. Brain regions targeted

12. Short eye openings
(palpebral fissure
length)
Smooth
philtrum (gutter
between nose & lip)
Thin upper lip
Facial Features FASD
Courtesy Ken Jones
and this child’s family

13. FASD occurs all over the world
Courtesy Carolyn
Hartness and
children’s
families

14. Why women drink in pregnancy
• Focus groups with Australian Aboriginal women*
report:
• Unemployment,
• Lack of knowledge of the adverse effects of alcohol
on the fetes,
• Being subject to domestic violence,
• Having a partner or friend who drinks,
• The need to travel long distances to deliver their
babies,
• The legacy of loss of traditional land and culture and
the ‘stolen generation’
*(D’Antoine, personal communication, 2011).

15. Sissy’s Story

16. Marulu FASD Strategy Funders
WA Government Department of Heath
WA Government Department of Aboriginal Affairs
National Health and Medical Research Council
WA Country Health Service
Pilbara FASD Strategy Funders
BHP Billiton
National Health and Medical Research Council
Healthway
The authors declare
no conflicts of interest

17. Community consultation and planning,
Environmental scan
Established Hedland
FASD Network
Ongoing FASD Network meetings, process and outcome evaluation
Targeted prevention messages
Intensive ANC and PNC for high risk mums
Support development of local
FASD Model of Care
Ascertain gaps and needs and candidate programs
Support Hedland FASD Network
Provide FASD related training to local workforce
Community researchers
FY 2015 FY 2016 FY 2017 FY 2018 FY 2019
Planning
Coordination
Management
and Evaluation
Prevention
Diagnosis
Targeted Therapies
and Support
Capacity Building,
Policy and
Translation
Training in Assessment and Multi-Disciplinary Clinics
Support local leadership capacity, advocacy and liquor restrictions
Less
10%
Less
10%
Less
10%
Less
10%
Percentage of women
drinking while pregnant
?
P I L B A R A F A S D S T R A T E G Y 2 0 1 5 - 2 0 1 9
Evaluate local Model of Care
AUDIT-C AUDIT-C AUDIT-C
Develop and pilot therapeutic parenting support program
ALERT
TV
Ads
TV
Ads
TV
Ads
Multi-disciplinary clinics in schools
Formative research to plan
Prevention intervention
KAP KAP KAP KAP KAP

22. Meet the Kimberley Project Team

23. Meet the Pilbara Project Team

24. FASD Prevention Strategy
Research Goal
• To develop, implement and evaluate The FASD
Prevention Strategy to increase the proportion
of women abstaining from alcohol while
pregnant.

25. Methodology
• Participatory action research
• Support local organisations to develop and
implement The Prevention Strategy
• Evaluate impact on rates of pregnant women
abstaining from alcohol during pregnancy
• Document The Prevention Strategy

26. Primary outcome
• An increase in the proportion of pregnant
women abstaining from alcohol during
pregnancy.

27. Secondary outcomes
1. Increased community awareness and
knowledge about FASD and its impacts.
2. Increased community knowledge of the
supports available to assist women to abstain
from alcohol during pregnancy and their
importance.

29. Level 1 Activities: Fitzroy

30. Level 1 Activities: Pilbara
Broad awareness building and health promotion efforts

31. Community Engagement &
Capacity Building
 The direct involvement of Aboriginal people and
their families is crucial to the long term success of
this project.
 Working together, we aim to increase the
capacity of families and communities to support
children with FASD.
 We are continuing to recruit, train and employ
community members as researchers to provide
the direct link between research, local action
plans and families.

32. Adrian’s Story

33. Results

34. Prevention Evaluation in the Fitzroy
Valley and Pilbara
• Evaluation was conducted via self-reported
consumption of alcohol by pregnant women
• And a Knowledge, Attitudes and Practices Survey
developed with the help of local experts, community
advisors, and international collaborators (Nancy Poole,
Deborah Rutman, Marilyn Van Bibber)

35. Alcohol Consumption During
Pregnancy
• Self-reported alcohol consumption
• Recorded by experienced midwives in Fitzroy
• 600 pregnancies in the Fitzroy Valley since the
4th quarter of 2008
• Hospital records from Port Hedland Hospital
were retrieved for 420 pregnancies from 2010

36. Proportion of Women Consuming Alcohol in the 1st Trimester, Fitzroy
Valley (UNPUBLISHED DATA)
0.00%
10.00%
20.00%
30.00%
40.00%
50.00%
60.00%
70.00%
80.00%
Combined 1st Trimester
Communicare Pregnancy Outcomes 1st Tri
Communicare Antenatal Visits
Marulu Strategy Began

37. KAP Survey
• 60 questions in 11 categories
• Quantitative and qualitative
• ~35 minutes to complete
• Designed to be culturally appropriate and
conducted with local community researchers

38. Data Collection

39. KAP Survey Participants
Time & Area Total
Number
Proportion
Women
Proportion
Aboriginal
Fitzroy Valley Pre-Mass Media 200 53% 95%+
Fitzroy Valley Post 203 57% 95%+
Pilbara Pre-Mass Media 264 74% 63%
Pilbara Post 405 75% 61%

40. Drinking in Pregnancy Knowledge
(UNPUBLISHED DATA)
75.00%
80.00%
85.00%
90.00%
95.00%
100.00%
Drinking during pregnancy can
harm the baby
No alcohol in pregnancy is the
safest choice
There is no safe time to drink
Pre Fx (N=200)
Post Fx (N=203)
Pre Port Hedland (N=297)
Post Port Hedland (N=405)

41. FASD Knowledge
(UNPUBLISHED DATA)
0.00%
10.00%
20.00%
30.00%
40.00%
50.00%
60.00%
70.00%
80.00%
90.00%
Knew name FAS/FASD
Unprompted
Knew name FAS/FASD Prompted Symptoms of FASD last all their
lives
Pre Fx (N=200)
Post Fx (N=203)
Pre Port Hedland (N=297)
Post Port Hedland (N=405)

42. Actions
(UNPUBLISHED DATA)
0.00%
10.00%
20.00%
30.00%
40.00%
50.00%
60.00%
70.00%
80.00%
90.00%
Wouldn't drink during pregnancy Would do something if they saw a woman
drinking during pregnancy
Pre Fx (N=200)
Post Fx (N=203)
Pre Port Hedland
(N=297)
Post Port Hedland
(N=405)

43. Summary
• Alcohol consumption during pregnancy in the
Fitzroy Valley in the 1st Trimester of pregnancy
has dropped from 70% to <20%
• Knowledge of the dangers of drinking during
pregnancy was high in both areas
• There are some gaps in the knowledge of the
finer details about FASD
• Many people are ready to take action

44. Summary
• The comprehensive, long-term and community-
led approach to FASD Prevention, Diagnosis and
Therapy has shown that significant results can be
achieved in only five years
• The key elements of this culturally appropriate,
multi-level strategy offers a blueprint for
successful adoption/adaptation by other
communities experiencing the long term impacts
of colonization including trans-generational
trauma and high levels of alcohol and substance
use in Australia and internationally

45. Acknowledgements
Ms Maureen Carter
Ms June Oscar AO
Ms June Councillor
Dr James Fitzpatrick
Mr Glenn Pearson
Assoc. Prof. Roz Walker
Kristy Newett
Kristen White
Kristen Campbell
Marulu Leadership Group
Hedland FASD Community Reference Group
Hedland FASD Network
Children, families and community members of the Fitzroy Valley and Pilbara

46. Website: www.wmhsac.com
Facebook Page:
https://www.facebook.com/WirrakaMayaHSAC/
YouTube channel, where you can view our latest campaign
and past ones:
https://www.youtube.com/channel/UCmJLe9s-
I5HyYjEAtkZLLfg

47. Contact Details
Senior Data and Statistics
Manager
Dr Martyn Symons
martyn.symons@telethonkids.org.au
+618 9489 7642
Principal Investigator
Dr James Fitzpatrick
james.fitzpatrick@telethonkids.org.au
+618 9489 7932
Program Manager
Kaashifah Bruce
kaashifah.bruce@telethonkids.org.au
+618 9489 7828
Alert Program Study Coordinator
Bree Wagner
bree.wagner@telethonkids.org.au
+618 9489 7752
Chief Investigator
Pilbara FASD Strategy
A/Prof Roz Walker
roz.walker@telethonkids.org.au
+618 9489 7952

48. Twitter and Website
@makeFASDhistory
https://alcoholpregnancy.telethonkids.org.au/