Alberta Centre for Children, Family and Community Research

1. Alberta Centre for Children, Familyand Community Research Symposium—Small Group Session Results October 10, 2004

2. Small Group Session (SGS) Results Feedback Funnel GapsQuestions Research Questions

3. Feedback Funnel Definition of the feedback groupings: Gaps — Identified gaps in knowledge by SGS participants Questions — Broad areas of interest Research Questions — Specific questions posed by SGS participants

4. Feedback Funnel—Comments Gaps in our knowledge most often cited in the SGSs: 1. The prevalence of FASD in Alberta 2. What strategies/practices work in preventing and intervening with FASD? 3. What resources (education, training, programs, skilled workers, funding) are available for FASD individuals, families, practitioners, custodians, etc.? 4. The availability of simple, accurate and consistent screening, assessment and diagnostic tools 5. How do we engage men, families, and communities into active roles?

5. Feedback Funnel—Gaps Additional highlighted gaps that emerged from the SGSs: • None of the research focuses on families and communities • Don’t know what is common to the 70 programs that are currently in place in Alberta • In prevention, who do we need to target • The developmental trajectory for a person with FASD—without it we don’t know how effective intervention will be • The costs of providing services (treatment programs) • An overall communications plan • Longitudinal studies that follow FASD individuals through life • Measuring effects—how much of what works, for whom, when and what is the best way to measure it?

6. Questions About What Practices or Programs Work • Knowledge of the most effective means for prevention/ intervention • Inventory of best practices • Missing link of tracking what is effective • How to make the biggest difference to decrease prevalence • What makes a program successful? • What common elements characterize successful programs? • If FASD is generational, how can we address whole families that are affected? • How do we best work with a mother who has FASD? • How can we counsel a woman at risk if having a child with FASD before she becomes pregnant? • What can be done to motivate women to change drinking behaviour?

7. Questions About What Practices or Programs Work (Cont’d) • What are best practices? • What are the most effective strategies in breaking barriers for women seeking treatment for addiction? • What strategies exist to get families with diagnosis to get treatment? • How do we involve the community? • How do we hang on to women at risk, long enough to make a difference? • How do we integrate FASD children into society? • What post-natal interventions can make a difference? • How do we engage men in prevention? • How do you determine what is optimal support for individuals? • Do mentorship programs work—why?

8. Questions About What Practices or Programs Work (Cont’d) • How can we communicate that no drinking is best? • How can we interconnect life-long services (schools, AADAC, public health, etc.) to prevent the current “extremes” on the street, in jail, hospital, etc.? • How do we improve our services? • What supports will keep families together?

9. Questions About Diagnosis and Assessment • Why is it difficult to identify and diagnose mothers with FASD giving birth to babies with FASD? • What are the diagnoses criteria for FASD over a lifetime? • How beneficial is diagnosis—what access does it provide? • To determine and assess FASD, how can we ask the right questions in the right way?

10. Questions About Program and Resource Availability • How do we support mothers and families with FASD children? • What programs are available for adolescents with FASD; what is the follow-up for children and youth who leave programs? • How do we address cases where children with FASD have a diagnosis but do not meet criteria for programs? • What supports are available for caregivers and front-line providers? • What is being done to aid adult FASD? • What skill sets are available in Alberta?

11. Questions About Individual Strategies or Approaches • In prevention, who do we need to target? • Do we have enough expertise in Alberta? • Applicability of stem-cell research in assisting with FASD • If we reduce poverty, does this have an effect on FASD? • What can be applied from other programs (e.g., AIDS education) to help in prevention programs? • If families are provided support, does it benefit the child? • What are the outcome differences of those in prevention/ intervention programs versus those who are not? • What impact does social marketing have—e.g., in increasing awareness or changing drinking behaviour of women of childbearing age? • What efficiencies come with life-long prevention? • How do we integrate community services on an ongoing basis?

12. Questions About Individual Strategies or Approaches (Cont’d) • When is the best time to start social marketing? • As a service provider—what outcome am I aiming for—why? • What are the strengths in the research community? • How do we identify strengths of people with FASD? • How early does intervention need to be for it to be effective? • When would introducing education in schools be more effective in reducing teen pregnancy? • What constitutes a successful strategy? • What happens if intervention occurs without diagnosis? • Is there a simple screening tool? • What socio/cultural factors influence women to drink during pregnancy? • What is the impact of multiple foster home placements? • What factors are important in successful placements in foster homes?

13. Questions About Individual Strategies or Approaches (Cont’d) • How do FASD youth in care, particularly those who are aboriginal, fit into prevention and intervention strategies? • Collective caring—can we work with the aboriginal community to promote future healthy children? • What is the parent satisfaction with the access to resources?

14. Feedback Funnel—Research Questions Specific questions that address researchable topics: • How does the level of comfort with the healthcare provider affect information sharing between pregnant women and practitioners? • Does the current diagnostic differentiations (i.e., a sore of 2 or 3 on the DPN FAS measurement scale) reflect actual differences in the effects of alcohol on an alcohol-exposed person? • What is the incidence of FASD by age group? • FASD youth outcomes in the justice system for those involved with multi-disciplinary teams versus those not involved?

15. Feedback Funnel—Research Questions (Cont’d) • What are the characteristics of children 0-3 years with FASD? • What proportion of FASD children are getting treatment? • What level of micro-nutrients can be given to women who are pregnant and ingesting alcohol? • Does Canada have a higher prevalence of FASD? • Why do males appear more prone to an FASD diagnosis—genetics, behaviours? • How long is intervention necessary for those with high IQ? • If more respite is available—would/could families stay together? • Who is having the most FASD babies—which high-risk population? • Some people with diagnosis have successful lives, some don’t—why?

16. Feedback Funnel—Research Questions (Cont’d) • What are the long-term effects of breast feeding if the mother is drinking—pros, cons? • What % of FASD children are in care of parent versus CPS at age x? • What % of individuals incarcerated have been diagnosed?

17. Feedback Funnel—Research Questions Some other thoughts: • Centre of excellence linked to community support • Multi-disciplinary FASD diagnosis/intervention and follow-up outcome clinic with sustainable funding • Public-private partnerships • Screening for adult offenders with FASD • Prevalence studies: - women at risk - early screening diagnosis - early intervention • Expand norms for social recognition • Refine functional assessment, link to intervention • Child welfare intervention strategies need evaluation