Many interventions are not rigorously evaluated and their program results are often not published in peer-refereed journals, so it is difficult to ascertain whether culturally appropriate substance use prevention programs are more effective in changing behavior than are standard approaches.
Cuts across all cultures and demographicsStructurale.g. facial featuresPhysiological e.g. short staturespontaneous abortions;• stillbirths;• growth restrictions;• facial anomalies;• skeletal defects;• kidney defects; and• cardiac defects Learning e.g. working memory and short term recall makes it hard to follow complex instructions: rote learning is difficult; forget things from one day to the next often seen as the child who won’t learn, doesn’t pay attention.Behaviourale.g. learning challenges lead to behavioural challenges due to unrealistic expectation, often easily lead, impulsive, confabulate (distorted or fabricated stories without intention to deceive) Difficulties making decisions; difficulties understanding the consequences of their actions;• poor memory;• difficulties generalizing;• difficulties understanding time and money concepts;• communication difficulties; and• speech and language difficultiesSecondary disabilities commonly associated with FASD:• mental-health problems;• disrupted school experiences, drug and alcohol abuse;• difficulties holding a job;• difficulties handling money;• inappropriate sexual behaviours;• homelessness; and• suicide (Streissguth, 1997)direct costs associated with FASD over a lifetime have been estimated at about $1.5 million per person with FASD” (Public Health Agency of Canada,
This project involves researchers, program evaluators, front-line workers, program administrators and funders in the creation of common evaluation frameworks for FASD prevention and intervention programs serving pregnant women and mothers, and youth and families living with FASD. A Social Determinants of Health lens will guide the consideration of indicators of success. Promising evaluation methods and measures will be identified related to health and social outcomes that can be used across a range of programs and that account for geographical and cultural differences found between and among programs across Canada.
Process to date:We contacted program providers, researchers/evaluators across Canada in order to identify and gather evaluations of FASD prevention and FASD support programs (published and unpublished), including:pregnancy outreach programs parenting mentoring programs (e.g., PCAP-based) supportive intervention programs for youth or adults living with FASDprograms focusing on addressing social determinants of health for pregnant/parenting women We reviewed evaluations in order to identify:How FASD prevention and intervention programs serving women and their families are currently being evaluated?What client and community outcomes are anticipated – both formative & summative, short-term, intermediate, long-term?What are programs’ indicators of these outcomes – i.e., of program success, and program outputs? What tools/ instruments are being used?What are promising approaches to evaluation?So, we created three Maps:Mapping Evaluation of FASD Prevention ProgramsMapping Evaluation of FASD Support ProgramsMapping Evaluation of FASD programs in Aboriginal communities
Maps – resonate with program staff at all levels, funders, policy makers Broadens the discussion e.g. with funders regarding outcomes and highlights the complexity of the work ,e..g. addressing social determinantsSee program elements as a whole Are making use of maps for program planning, staff training, program development, program focus, explaining program to others e.g. Richard
Mentoring sites: found that the small agencies often don’t have the resources to carry on evaluation of their own or even to pick up conducting evaluations when provided with framework and some tools. Agencies with some experience with evaluation have been able to proceed – e.g. Winnipeg
Mapping Evaluation of Community-based FASD ProgramsCanadian Evaluation SocietyEvaluation Across BoundariesJune 9-12, 2013
Project teamCarol Hubberstey, MASharon Hume, MSWNancy Poole, MA (PhD cand)Deborah Rutman, PhDMarilyn Van Bibber
Agenda What is FASD Situating the project Project Objectives Process Evaluation Maps Next steps
What is FASD Fetal Alcohol Syndrome & Fetal Alcohol SpectrumDisorder Neuro-developmental disorder caused by maternalalcohol consumption during pregnancy Learning disabilities; behavioural issues; socialvulnerability; health and mental health issues Lifelong adaptive living challenges
Situating the project Organizations are diverse Professional to grass roots Prevention – prenatal and young children Supportive Intervention – youth and adults
Project objectives Identify promising evaluation methods, tools,indicators of success Create common evaluation frameworks and toolsfor FASD programs Support the capacity of community-basedorganizations to undertake evaluation We also discovered the need to do the same forFASD prevention and support programs inAboriginal communities
Process Consultations across the country Review of available evaluations Began with support programs and preventionprograms Need for separate Aboriginal map emerged
Going Forward1. Adding to the project website, additionaloutcomes, indicators, and examples of tools fordata collection:www.fasdevaluation.ca1. Mentoring with programs wanting toimplement some or all aspects of an evaluationframework1. Multi-site application of the framework
Funder, Sponsors, ContactsFunder Public Health Agency of Canada,FASD Strategic Grants FundSponsors BC Centre of Excellence for Women’sHealth Canada FASD Research Networkcarolmarie@firstname.lastname@example.org