James Fitzpatrick
- 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)
- 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
Editor's Notes
- #13: 8 November 2017
- #14: <insert international statistics> <insert Australian statistics>
- #15: Maternal risk factors reported in international studies: remote residence, low socioeconomic and educational status, and living in a community tolerant of heavy drinking.36, 37 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). 36. May PA, Tabachnick BG, Gossage JP, Kalberg WO, Marais AS, Robinson LK, et al. Maternal Factors Predicting Cognitive and Behavioral Characteristics of Children with Fetal Alcohol Spectrum Disorders. J Dev Behav Pediatr. 2013; 34(5): 314-25. 37. Astley SJ. Profile of the first 1,400 patients receiving diagnostic evaluations for fetal alcohol spectrum disorder at the Washington State Fetal Alcohol Syndrome Diagnostic & Prevention Network. Canadian journal of clinical pharmacology. 2010; 17(1): e132-64.
- #25: A reduction in the rates of FASD will only come from preventing women drinking alcohol during pregnancy, and this requires a multi-dimensional, evidence-based, community-designed prevention strategy
- #26: Methodology Establish a Prevention Strategy governance structure that will ensure the cultural integrity and acceptability of the methodology, and the strategy content, implementation, evaluation and dissemination of findings. Employ participatory action research methodology that empowers community leaders, stakeholders and community members in designing The Prevention Strategy. Support local organisations to develop and implement The Prevention Strategy, which will comprise a population-based communication campaign and targeted interventions by service providers. Specific messages, activities and materials will be based on background and formative research, will support positive attitudinal and behavioral change among the target groups. Evaluate the impact of The Prevention Strategy on rates of pregnant women abstaining from alcohol during pregnancy as well as secondary outcomes. Document the community-initiated strategy for FASD prevention in the Fitzroy