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Table 10 Top 10 System-Level Information and Research Needs

From: Integrating care for individuals with FASD: results from a multi-stakeholder symposium

Rank Response/Comment
1 New Models of Child & Family Support- E.g., “healthy village” around the child. How can we support mothers/families at risk? Can we minimize putting children in care by providing alternate supports?
2 More Longitudinal Outcome Data- Post diagnosis: how are children/adults doing? How did a diagnosis impact their lives? What are the factors that affect positive and negative outcomes? What is the effect of aging (e.g. adolescence, older adults) on the support needs of individuals with FASD? Do we need an influx of services at certain times vs. a consistent level of support throughout the lifespan?
3 Quality of Life & Supportive Services for Parents/Caregivers- What is the impact on the parent’s/caregiver quality of life across the life span? What are the best practices for supporting parents of children with FASD? (e.g., supports for parent well-being and supports in their parenting role.)
4 Cost-Benefit or Minimization Analysis- What would be the cost savings to the system if an individual with FASD had full access to required supports (e.g. filling the gap…adequate housing, mentoring, physician, mental health, etc.)?
5 Community-Based Participatory Research Methods- How do we engage in community directed research with the First Nations communities?
6 Family-based Needs Analysis- Qualitative study of family needs. What have they found useful; suggestions for what their needs are and what would help them navigate the system better/what have they found successful.
7 Resiliency/Protective Factors: What are the protective factors that result in improved quality of life for a person with FASD?
8 Intervention Research- Effective intervention strategies - what works, what are the best options? What are solid life skills that a child needs in order to be successful (i.e. cooking, money management)? What are the pragmatic skills that everyone needs?
9 Reducing/Minimizing Effects of Alcohol in Pregnancy- What works to minimize effects of alcohol exposure in pregnancy -- harm reduction e.g. nutrition, prenatal care, other factors; what positive supports make a difference
10 Integration & Best Practices- What model works best for integration of services?