32 - From Surviving to Thriving with FASD: A Conversation with Dr. Christie Petrenko

FASD Hope is a podcast about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over 18 years of lived experience.

 Episode 32 is titled "From Surviving to Thriving with FASD" and features Christie Petrenko, Ph.D, a clinical psychologist and researcher who has been conducting research with individuals with FASD since 2003. She completed her graduate training with Edward Riley and Sarah Mattson in San Diego, CA in 2009 and she is currently a faculty member at Mt. Hope Family Center, University of Rochester. Her research focuses on developing and evaluating interventions for people with FASD, including the use of mobile health technology to increase access to care. She has experience training teams of providers, both regionally and internationally, in FASD Diagnosis. Dr. Petrenko also runs a multidisciplinary FASD clinic providing diagnostic, intervention and family support services in Rochester, NY.  In this PARADIGM-SHIFTING and RESOURCE FILLED episode, Natalie (podcast host) speaks with Dr. Petrenko about the following topics: Dr. Petrenko's professional background and the work she is doing with Mt. Hope Center / University of Rochester,  barriers in accessing care, factors that increase care for individuals with FASD, Dr. Petrenko's "Surviving to Thriving" model, Families Moving Forward Connect Intervention and Mobile app (for FASD families) and ways that families and communities can begin to shift the mindset of "Surviving to Thriving with FASD". How Do We Shift From Surviving to Thriving?1.  Increased Awareness of FASD2.  Increased Access to Care3.  Reducing Stigma Factors that can promote access to FASD services:-  Having a stable and nurturing home-  Having a caregiver with strong advocacy skills and FASD knowledge-  Having evidence of disability (i.e. facial features, physical characteristics)-  Regions of higher awareness- Younger children - Parents and caregivers getting respite and support / renewing their energy Study by Dr. Petrenko Regarding Success of FASD Supports:1.  Supports need to be available across the lifespan. 2.  The approach needs to be PROACTIVE and PREVENTATIVE.3.  Care needs to be individualized and customized.4.  Care needs to be comprehensive.5.  Care needs to be coordinated across systems and streamlined over time periods. 

Resources for Providers to Increase FASD-Informed Care

CDC Collaborative for Alcohol-Free Pregnancy – FASD Training and Resources

https://nccd.cdc.gov/FASD/

SAMHSA TIP 58: Addressing Fetal Alcohol Spectrum Disorders

Free downloadable guide for how to adapt and deliver mental health treatment for people with FASD. https://store.samhsa.gov/product/TIP-58-Addressing-Fetal-Alcohol-Spectrum-Disorders-FASD-/SMA13-4803 

American Academy of Pediatrics – FASD Toolkit

https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/fetal-alcohol-spectrum-disorders-toolkit/Pages/default.aspx

 

Petrenko, C. L. M., Parr, J, Kautz, C, Tapparello, C., Olson, H. C. (2020). Families Moving Forward Connect mobile health intervention for fetal alcohol spectrum disorders: Development and qualitative evaluation of design and functionalities. JMIR: uHealth mHealth, 8, e14721. https://mhealth.jmir.org/2020/4/e14721/

www.fmfconnect.com 

 

Flannigan, K., Harding, H. D., & Reid, D. (2018). Strengths among individuals with FASD. CanFASD. Pay again

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