Strategies for Success with Health Provider Audiences

1. Strategies for Successwith HealthProvider Audiences Role Play Training Yvonne Fry-Johnson, MD Cindy Signore, LPN FASD Train the Trainers November 16, 2012 Carolyn (Carey) Szetela, PhD Southeastern FASD Regional Training Center

2. Objectives • Recognize Health Provider Barriers • Methods for Training Health Providers • First Person Stories • Role Play • Ethics • Motivational Strategies to Make an Impact! Former medical students Joylene Thomas and Jamila Morrow

3. CJ (20 yo): “Not Fitting In” From “A Child for Life” DVD at: nofas.org/estore/DVDVideoCD-Rom.htm ($35 US) 3

4. First Person Accounts The Story of Iyal (2 versions, 3 and 7 minutes) Google ‘FASD, CDC, Iyal’ http://www.cdc.gov/NCBDDD/video/Iyal/index.html

5. Shhh... It Could be an FASD • Psychologist tells mother, “Why would you want to label your child with that?”* • Birth mother reports physician saying, “I don’t like to put that guilt on mothers”* • Correctional systems questionnaire: of over 3 million inmates, only one was reported to have a diagnosis of FAS** * J Salmon. FASD: New Zealand birth mothers’ experiences. Can J Clin Pharmacol, 2008. **L Burd et al. FAS in the US corrections system. Addict Biol, 2004.

6. What Barriers Do We See? • Identification / diagnostic process is complex • Deference to other professionals (educators, school counselors, specialized health providers) • Misbelief that identification of an FASD does not help • treat disorders symptomatically • Fear of overwhelming the patient / parents • Concern regarding inadequate resources • Unfamiliarity with alcohol misuse (a hidden world)? • Stigma towards people with alcohol misuse?

7. Initiating a conversation with a patient/parent about a possible FASD? Responding to Children with FAS Lack of training Uncertain about how to intervene if problem is found Fear of offending mother Belief that the harm is already done Nevin AC et al. A survey of physicians’ knowledge regarding awareness of maternal alcohol use and the diagnosis of FAS. BMC Fam Pract. 2002. Some Health Provider Barriers

8. Prevention of Alcohol Use among Pregnant Women Lack of training Uncertain about how to intervene if problem is found Time constraints Personal discomfort Weisner C, Matzger H. Prenatal visits provide missed opportunities to address drinking behavior by medical and allied health care providers. Alcohol Clin Exp Res. 2003. Initiating a conversation with a woman at risk for an alcohol-exposed pregnancy? Some Health Provider Barriers

9. How Would a Patient Cope? “My son was 15 years old and the discovery of his “disability” (FASD) rendered him violent, angry, looking for a culprit to blame for his story and who better than the adoptive mum?”* “I had to face what I had done. The tears rolled for days upon weeks. I was so devastated that she was so harmed by what I had done.”** • Lydia Cooper, mom who drank “a lot” in pregnancy. Her daughter began “flourishing” after being evaluated and receiving an IEP. • *Simona Pichini, Fetal Alcohol Spectrum Disorder-FASD, my involvement as a scientist and as mother. Fetal Alcohol Forum, June 2012, p30-33, at www.nofas-uk.org. • **Gail Rosenblum, Despite Danish study, it’s not OK for pregnant women to drink. • StarTribune, July 4, 2012.

10. Identifying an FASD is Life Changing! “There’s a reason why I’m struggling so much inside, my mind, and feeling like an outsider…. There’s a reason why, I’m not stupid.” (Sydney)* (Mothers) “expressed much relief, b/c as well as knowing what was actually wrong with the child, it also made sense of confusing behaviors they had observed and had thought were the consequences of their own poor mothering skills.** *Department of Health and Human Services, Substance Abuse and Mental Health Services Administration. Recovering Hope: Mothers speak out about Fetal Alcohol Spectrum Disorders. 206. at http://www.ncadi.samhsa.gov. **J Salmon. FASD: New Zealand birth mothers’ experiences. Can J Clini Pharmacol, 2008.

11. Integrating Knowledge, Skills and Attitudes Training • Videos of peers modeling good practices • Using Role Play • “Pocket Pal” with Tools, Phrases Medical Students are videotaped simulating an FASD encounter with a mother, scored on a 10-measure scale “What I believe is happening with your child is she has what we call fetal alcohol syndrome.” “Are you sure?...” Role play with former medical students Deepa Parsh and Andree Haynes

12. Role Play Measures The Student Doctor (Y/N): 1. Inquires about four or more key risk factors of pregnancy for small birth weight (i.e., high blood pressure, infectious disease, smoking, malnutrition, family history). 2. Inquires about child’s diet. 3. Screens mother for alcohol consumption during pregnancy using a screening tool (asks minimum of 4 questions). 4. Informs mother of risks of alcohol use to child (FAS). 5. Describes 3 or more clinical features of FAS. 6. Informs mother of risks of alcohol use to future pregnancies. 7. Uses open-ended questioning to evaluate mother’s continued risk of alcohol dependence. 8. Shows support for the mother. 9. Makes recommendation to mother regarding follow up for herself. 10. Makes recommendation regarding follow up for baby (i.e., plans return office visit, offers handout, suggests further evaluations, or suggests a “let’s wait and see” approach).

13. Role Play Outcomes

14. FASD Role Play • 22 year old college student, name: ______ • Pregnant, 10 weeks • Excited about becoming a mom • Going to marry boyfriend • Likes to party and drink socially • Beer, wine, liquor (whatever is around) • Have cut down due to pregnancy • 1- drinks per occasion (previously 1-6) • Trainee: Do alcohol assessment • Describe risks of FAS/D – facial/growth/CNS

15. Medical Student Role Play Helps Address: • Non-judgmental interviewing • Truthful disclosure • Trustworthiness • Cultural competence • Empathy • Preserving hope

16. Role Play: Training Health Providers Empathy Support Grace Uwimfura as patient’s mother (L) and Kathleen Bailey, CNM, as midwife (R)

17. Focus on Attitudes and Ethics • Legal Implications for mothers with alcohol dependence • Evaluating Prevention Messaging • Taking advantage of curricular room for ethics and communication

18. Ethics, Law, and Attitudes:Law and Order Jury Duty Training* *audiences enjoy this training In USA, $25 at Amazon.com

19. Law and Order Jury Exerciseat FASDsoutheast.org Modifiable for 1 or 2 Hours(DVD presentation permitted for educational uses) • Pre-Test • Introduction to FASDs • Introduce and Explain Jury Duty • Show 20-minute Video Segment (Law and Order, “Choices”) • Jury (groups of 4-10, or whole-class if small group) • Class Discussion of Jury Verdicts • View Outcome of the Show Post-Test Reading Assignment: Maternal decision making, ethics, and the law. ACOG Committee Opinion No. 321. ACOG. ObstetGynecol 2005;106:1127-37. Includes Six Objections to Punitive and Coercive Legal Approaches to Maternal Decision Making.

20. Attitudes and Understanding:Mothers’ First Person Accounts “Knowing that I had caused my (child) to suffer…” Department of Health and Human Services, Substance Abuse and Mental Health Services Administration. Recovering Hope: Mothers speak out about Fetal Alcohol Spectrum Disorders. at http://www.ncadi.samhsa.gov.

21. Talking about Prevention Messages

22. We Can… ! • Recognize and Respond to Health Provider Barriers to Addressing FASDs • Educate and Demonstrate How To Do It • Encourage Courageous and Competent Communication • Good Training is Valued and Sustainable

23. Additional Training Resources • FASDsoutheast.org (Training toolbar) • at Meharry Med College, Nashville TN (USA) • Tel: (615) 327-5525 • fasdcenter.samhsa.gov (Education / Training toolbar) • CDC.gov/fasd (Training & Education toolbar) • NOFAS.org (Health Care Professionals toolbar for useful resources)

24. Questions, Comments ?? Thank you! FASDsoutheast.org