Unique Characteristics Protective Factors. Risks

Size: px

Start display at page:

Download "Unique Characteristics Protective Factors. Risks"

Janis Paul
5 years ago
Views:

2 Unique Characteristics Protective Factors Risks Desire to please Funny, great laugh Determined Stable, nurturing home Appropriate services Prenatal alcohol exposure Childhood trauma 2

Fetal Alcohol Syndrome (FAS) Partial FAS (pfas) Alcohol-Related Neurodevelopmental Disorder (ARND) Neurobehavioral impairment Facial features Growth delay Structural brain

3 Fetal Alcohol Syndrome (FAS) Partial FAS (pfas) Alcohol-Related Neurodevelopmental Disorder (ARND) Neurobehavioral impairment Facial features Growth delay Structural brain difference Neurobehavioral impairment Facial features If exposure unknown: growth OR structural Neurobehavioral impairment Confirmed prenatal alcohol exposure Hoyme et al.,

4 4

5 Executive Functioning Intelligence Primary Disabilities Attention Processing Speed Memory Social Communication 5

6 MENTAL HEALTH PROBLEMS DISRUPTED SCHOOL EXPERIENCE TROUBLE WITH THE LAW CONFINEMENT INAPPROPRIATE ALCOHOL & DRUG SEXUAL BEHAVIOR PROBLEMS Ages 6-11 (n=162) Ages (n=163) Ages (n=90) Streissguth et al.,

7 Age Being a victim of abuse or violence Frequent changes in household Higher level of behavioral problems Streissguth et al.,

8 Diagnosis before age 6 Diagnosis of FAS (vs. other FASD) Lower IQ Receiving developmental disabilities services Stable & nurturing home Streissguth et al.,

9 "gaps" - on and off days increased reactivity interpret willfulness defenses - adult and child angry punishment Malbin, 2002

10 Living with FASD: Young Adult Experiences LIFESPAN Individual Factors Age of Dxs Severity Strength /Weakness Childhood Services Contextual Factors Family structure Contact with Biological Maltreatment Religion Educate / Help Others Appropriate Services Others don t understand FASD Feeling Successful Secondary Conditions Accept Self & Disability Parent Support & Advocacy Vulnerable to Negative Peers Overcoming the Disability Supports Difficulty Coping

Secondary conditions occur at elevated rates Especially by adolescence and adulthood They often result from people not understanding the disability There are factors that increase

11 Secondary conditions occur at elevated rates Especially by adolescence and adulthood They often result from people not understanding the disability There are factors that increase and decrease risk some of which can be changed! Family members and service providers play a large role in promoting positive outcomes People with FASD need to feel successful!! 11

12 12

13 27 parents of children and adults (ages 3 to 33) with FASD 1 biological mother 26 foster/adoptive parents 18 service providers 9 pediatricians 3 neuropsychologists/therapists 2 FASD educators/advocates 2 educational advocates 2 child welfare workers Funded by: NIAAA K

prevention/intervention Brainstorm ideas of how to prevent secondary

14 Strengths and challenges of individuals with FASD Strengths and challenges of caregivers Age range and areas to target for prevention/intervention Brainstorm ideas of how to prevent secondary conditions Who? What? When? Where? How? Duration of intervention Incentives and obstacles

Transcribed verbatim Iterative process Review transcripts multiple times Identify themes and key concepts and how they are related Organize the data Look for

15 Transcribed verbatim Iterative process Review transcripts multiple times Identify themes and key concepts and how they are related Organize the data Look for confirming and disconfirming evidence Themes from parents and providers did not differ; combined for analysis Parent verification of results Miles, Huberman, & Saldana, 2014

16 Systems Barriers Petrenko CLM, Tahir N, Mahoney EC, Chin NP (2014). Prevention of secondary conditions in fetal alcohol spectrum disorders: Identification of systems-level barriers. Maternal and Child Health Journal, 18, Intervention Characteristics Petrenko CLM, Tahir N, Mahoney EC, Chin NP (2014). A qualitative assessment of program characteristics for preventing secondary conditions in individuals with fetal alcohol spectrum disorders. Journal of Population Therapeutics and Clinical Pharmacology, 21, e Caregiver Experiences Petrenko CLM, Alto ME, French AR, Freeze SM (under review). You have to fight for your child : Foster and adoptive parents; experiences raising a child with FASD in the context of the development of secondary conditions.

17 PREVENTION Lack of Knowledge of FASD Maintaining Services Implementation of Services Availability of Services Qualifying for Services Delayed Diagnosis SERVICES DIAGNOSIS The Road to Preventing Secondary Conditions 17 RECOGNITION Petrenko et al., 2014a

19 From caregiver and provider perspectives, interventions need to be: Available across the lifespan Proactive / prevention focus Individualized Comprehensive Coordinated across systems and developmental stages Petrenko et al., 2014b 19

20 Petrenko et al., 2014b

21 We know we need to: Educate people about FASD to reduce barriers Start early to prevent and continue supporting across lifespan! Recognize the strengths and difficulties of caregivers Involve the person with FASD, family members, and systems of care in intervention We also know specific strategies and services that may help So how do we mobilize the availability of services and supports for people with FASD and their families? 21

23 Multi-Component Intervention (30-weeks) Family Check-ins Ages 4-8 Adolescence 23

24 Families Moving Forward Intervention Managing child behavior School advocacy / consultation Resource linkages Social support / respite In-home consultation, every other week 24

self-esteem Relationships Problem solving Weekly

25 Promoting Alternative Thinking Strategies (PATHS) Self-control Emotional understanding Positive self-esteem Relationships Problem solving Weekly skills groups: kids with FASD + typically developing positive peers 25

26 Through FMF: Targeted school consultation Targeted provider consultation(s) Lectures across universities, agencies, and community settings to increase awareness, diagnosis, and referral Involvement with New York State Interagency Workgroup on FASD 26

27 Children ages 4 to 8 Rochester or Buffalo region Confirmed prenatal alcohol exposure or FAS/pFAS Typically developing positive peers 27

28 Neuropsych Evaluation Baseline Immediate Postintervention Follow-up 6-months Long-term Follow-up? -$$ Family Check-ins Ages 4-8?? Adolescence 30 weeks Family Check-ins: 3x per year 28

29 29

30 Social Motivation Loving/sweet Helpful Wants to please Thoughtful Friendly Makes laugh Personality Characteristics Happy/joyful Funny Fun Energetic Adventurous Curious Abilities/Talents Artistic Smart Leader Resilient Determined 30

31 Cognitive Teach important life lesson Change perspective Social Enjoy spending time together Keeps family involved; shared activities Emotional Brings joy Inspire others 31

32 Petrenko et al., 2016

33 33

High level of overall satisfaction Mean = 30.

34 High level of overall satisfaction Mean = (out of 32) Caregiver ratings about parent experience Felt positively about specialists Enjoyed sessions Felt could apply what they learned Caregiver ratings about child experience Children generally liked going to group Learned new skills Some difficulty applying what they learned

35 35

36 36

37 Best Practices FMF App! Future Derivative Programs Independent Replication & Effectiveness Study Community Trial Targeted Implementation & Dissemination University Trial 37

38 A University and Community trial have been completed (Heather Carmichael Olson UW/SCRI) The Families on Track Program included FMF and found promising effects Need independent replication for designation as best practice Trial of FMF currently underway 38

39 39

40 Reinforce learning module content

41 If you are a provider: Continue to explore opportunities for further education and training SAMHSA TIP 58 FASD Informed care Training is available in the FMF Program: If you are a caregiver or advocate for people with FASD: Continue to explore opportunities for further education and training Connect with others for support and to mobilize change in your community Everyone: Look for strengths & talents in people with FASD you will find them! 41

42 Participating children & families!! Community partners Funding: NIAAA K01 Consultants Luther Robinson, M.D. (UB) Mary O Connor, Ph.D. (UCLA) Clare Coles, Ph.D. (Emory) Heather Carmichael Olson, Ph.D. (UW/SCRI) Heather Taussig, Ph.D. (DU) Mt. Hope Family Center / University of Rochester Sheree Toth, Ph.D. Fred Rogosch, Ph.D. Jody Manly, Ph.D. Nancy Chin, Ph.D. Naira Tahir, MPH Erin Mahoney Mary Beth Pandolfino Graduate students Undergraduate Students 42

43 A lot of the fears are gone. I m so much more hopeful and optimistic. I just feel like I learned so much and it just has taken off a tremendous weight. -- Caregiver in Families on Track Program 43

Safe Babies Foster Parent Training Program

Safe Babies Foster Parent Training Program Module 1: Introduction to the Safe Babies Program 1 Begin the process of group participation Learning outcomes Understand the purpose and origins of the Safe