Evaluation of the Fetal Alcohol Spectrum Disorder (FASD) Initiative 2008–2009 to 2012–2013

Prepared by
Evaluation Directorate
Health Canada and the Public Health Agency of Canada

March 2014

Table of contents

List of Tables

Executive Summary

This evaluation covered the Public Health Agency of Canada's Fetal Alcohol Spectrum Disorder (FASD) Initiative for the period from 2008 to 2013. The evaluation was undertaken in fulfillment of the requirements of the Financial Administration Act and the Treasury Board of Canada's Policy on Evaluation (2009).

Evaluation Purpose and Scope

The purpose of the evaluation was to assess the relevance and performance of the FASD Initiative. The evaluation included FASD Initiative activities conducted by the Centre for Health Promotion and Regional Operations within the Health Promotion and Chronic Disease Prevention Branch.

Program Description

The aim of the FASD Initiative is to help reduce the number of individuals affected by prenatal alcohol exposure and improve the outcomes of those affected by FASD. The Public Health Agency works towards achievement of these objectives through three main groups of activities: leadership, coordination and collaboration; development of the evidence base; and, knowledge exchange facilitation. To support these activities, the Public Health Agency manages the National Strategic Projects Fund which supports projects that are national in scope, and aims to:  improve or increase awareness and understanding of FASD, its effects, factors of risk and resources available among the public and professionals; develop and strengthen the coordinating functions that ensure access to tools, expertise and resources across Canada; address gaps and inadequacies in the system for both prevention and support; and, address gaps and opportunities to improve outcomes for those affected by FASD. The Public Health Agency also funds activities on a contractual basis to respond to emerging priorities, leads a federal Interdepartmental Working Group on FASD, and participates in other FASD groups.

CONCLUSIONS - RELEVANCE

Continued Need

There is a continuing need for activities to address FASD. FASD is considered to be the leading known preventable cause of birth defects and non-genetic, developmental disability in Canada and abroad, and has lifelong consequences for individuals, their families and society. Adverse effects from FASD range from mild to severe and may include physical, mental and central nervous system disabilities, such as cognitive, behavioral and emotional issues. While the precise prevalence of FASD in Canada is largely unknown, it is estimated that FASD occurs at a rate of 1 out of every 100 live births and prevalence may be as high as 2-5 per cent. FASD is estimated to be higher in some sub-populations. Because FASD is a permanent, lifelong disability, most people with FASD will need health, education and social supports throughout their lives. Of those diagnosed with FASD, it is estimated that the majority have mental health issues. Additionally, studies suggest that a large proportion of children with FASD live in institutional or foster placements or are under adoption care, and that a disproportionate number of people in conflict with the law have FASD. Estimates on the costs of FASD in Canada range from $4 billion to $5.3 billion per year; however, these estimates do not take into account the socioeconomic costs for families, including welfare costs, costs to the police and justice system or  the costs associated with lost potential and opportunities.

Alignment with Government Priorities

The FASD Initiative is broadly aligned with Government of Canada and Public Health Agency priorities. While not explicitly mentioned as a Government of Canada priority, FASD is recognized as a health, social, justice and economic issue. There are links between FASD Initiative objectives and recently stated Government of Canada priorities with respect to health promotion, mental health, and violence and crime prevention. The objectives of the FASD Initiative align well with the Public Health Agency of Canada's priorities identified in recent parliamentary and corporate strategic reports. These priorities are vertically linked along the themes of health promotion, health inequalities, and children and youth.

Alignment with Federal Roles and Responsibilities

There is a leadership role for the Government of Canada and the Public Health Agency of Canada in relation to FASD. The Department of Health Act and the Public Health Agency of Canada Act guide the Public Health Agency's roles and responsibilities for the prevention of illness. The Minister of Health has a broad mandate to protect Canadians against health risks. Under the leadership of the Chief Public Health Officer, and in collaboration with its partners, the Public Health Agency is mandated to lead federal efforts and to mobilize pan-Canadian action in preventing disease and injury. The 1999 program authorities for the FASD Initiative comprised a wide range of activities including prevention, public education, capacity building and coordination. However, financial resources that were allocated to the Initiative ($3.3 million) were modest for the breadth of activities to be addressed as outlined in the program authorities. FASD activities are housed within the Centre for Health Promotion. Their mandate focuses on promoting the health of Canadians and communities. While many activities outlined in the program authorities are a natural fit with the Centre's mandate, others do not fit (such as determining prevalence).

CONCLUSIONS - PERFORMANCE

Achievement of Expected Outcomes (Effectiveness)

The evaluation found evidence that the FASD Initiative has made progress towards achievement of immediate and intermediate outcomes. The FASD Initiative's multi-sectoral activities have led to enhanced partnerships and credibility in the Public Health Agency's approach to FASD, and target stakeholders are engaged and are responding coherently to FASD priorities. In addition, the FASD Initiative has worked with key partners and stakeholders to develop knowledge products - such as guidelines, screening tools and diagnostic tools - that are perceived as filling gaps in knowledge and, when tested, appear to be used by segments of the target audience. However, there is little evidence on how widespread the use of these products is among the broader target population. There was limited data available to assess the long-term outcomes of the FASD Initiative although the literature suggests that alcohol use during pregnancy continues to occur. No unintended outcomes or impacts were identified.

The evaluation encountered some challenges with respect to assessing effectiveness. The logic model developed for the Initiative has multiple outcomes that mix immediate and intermediate time frames, making performance measurement and evaluation problematic. Although useful performance measurement efforts were made, especially those in response to the 2008 evaluation, performance information for stated outcomes was still incomplete.

Demonstration of Economy and Efficiency

The FASD Initiative appears to provide good value for money; it is seen as a well-respected Initiative that is making significant achievements across the country with a very limited budget. There is evidence of the production of numerous outputs and progress towards the achievement of planned outcomes. However, the wide scope of activities required under the authorities for the FASD Initiative appears to be challenging, given the allocated resources. The evaluation found evidence of leveraging funds from other groups, expertise and other resources, as well as efficiencies gained through operational approaches although there are further efficiencies that may be gained from enhancing leveraging opportunities with other Public Health Agency activities.

RECOMMENDATIONS

Recommendation 1

Taking into account advancements and lessons learned as well as existing gaps, revisit the Initiative's strategic approach to addressing FASD and develop an action plan to prioritize activities. This plan may include:

  1. Enhancing the focus on upstream prevention, as per the mandate of the Centre for Health Promotion.
  2. Identifying linkages to the Centre for Chronic Disease Prevention as part of their lead role in surveillance.
  3. Identifying knowledge translation and exchange activities that would maximise the usefulness of key knowledge products. Opportunities to leverage activities through the Public Health Agency's children's programs should be included where appropriate.
  4. Developing a stakeholder engagement strategy for internal and external stakeholders to ensure collaborative efforts remain sustainable. This strategy should determine important relationships for the distribution of key knowledge products to ensure they reach and are used by target populations.

Over the past 15 years, the Initiative has undertaken and delivered on an ambitious mandate. Part of the issue is the complexity of FASD and the whole continuum along which there is a need for prevention activities (such as those focussing on women of child-bearing age, infants born with FASD, and children and adults affected by FASD).

To address these issues, the Public Health Agency has fostered productive multisectoral relationships. Knowledge products have been developed and these should advance public health policies and practices. Considering the work that has occurred, there is now an opportunity to take stock of how the Initiative evolved over time, and revisit/reaffirm the internal short- and long-term strategic directions of the FASD Initiative which fit within the Public Health Agency's mandate and the mandate of the Centre for Health Promotion and focus on upstream prevention work to promote the health of Canadians and their communities.

It will be critical to continue to target limited resources, and leverage opportunities within and external to the Public Health Agency, to where this federal initiative can best address current and emerging FASD needs in Canada.

Recommendation 2

Enhance the performance measurement approach to better inform decision-making by updating the Initiative's logic model, and identifying, tracking and analyzing relevant indicators that focus on monitoring outcomes.

The logic model for the FASD Initiative could benefit from outcome definition, particularly in light of the Initiative's strategic planning exercise stemming from recommendation 1. Additionally, while there was some performance measurement data available to assess activities and outputs for this evaluation, there is a gap in terms of tracking outcomes. More effort to track and analyse additional immediate and intermediate outcome indicators, once the logic model has been updated, is required. Improvements to the performance measurement approach can enhance the ability to assess Initiative success on a continuous basis. This approach can be stand-alone, or embedded within a broader Centre for Health Promotion performance measurement strategy, specifically if leveraging performance measurement activities lead to a more efficient collection technique.

Management Response and Action Plan

Evaluation of the Fetal Alcohol Spectrum Disorder Initiative
Recommendations Response Action Plan Deliverables Expected Completion Date Accountability Resources
Taking into account advancements and lessons learned as well as existing gaps, revisit the Initiative's strategic approach to addressing FASD and develop an action plan to prioritize activities. This plan may include:
  1. Enhancing the focus on upstream prevention, as per the mandate of the Centre for Health Promotion;
  2. Identifying linkages to the Centre for Chronic Disease Prevention as part of the lead role in surveillance;
  3. Identifying knowledge translation and exchange activities that would maximize the usefulness of key knowledge products.  Opportunities to leverage activities through the Public Health Agency's children's programs should be included where appropriate;
  4. Developing a stakeholder engagement strategy for internal and external stakeholders to ensure collaborative efforts remain sustainable.  This strategy should determine important relationships for the distribution of key knowledge products to ensure they reach are used by target populations.
Agree To inform the development future FASD upstream prevention activities:
  • Conduct an assessment of gaps and opportunities for FASD prevention activities, including engagement with children's programs, Regional Operations and external stakeholders.
Gap Analysis Report November 2014 Director General, Centre for Health Promotion
(DG, CHP)

Assistant Deputy Minister, Health Promotion and Chronic Disease Prevention
(ADM, HPCDP)

External Contractor
Existing resources $10K O&M
  • Engage the Centre for Chronic Disease Prevention to determine linkages and prioritize options for integrating FASD into current and planned surveillance activities.
Record of Decision June 2014 Existing resources
  • In alignment with Branch horizontal planning, develop a knowledge translation and exchange plan which will include operational and performance measurement components of G&Cs and O&M investments.
Knowledge Translation and Exchange Plan February 2015 External Contractor existing resources O&M $25K
  • Develop a stakeholder engagement plan which will identify key internal and external stakeholders, including other Government of Canada departments. The plan will also include a knowledge exchange component for FASD intersection with issues such as with mental health promotion, suicide prevention, child maltreatment, gender analyses, alcohol policy and health determinants.
Stakeholder Engagement Plan December 2014 Existing resources
  • Develop a 5-Year Strategic Plan for the FASD Initiative, including the components developed above, as well as other identified strategic and supportive activities, to define strategic directions.  It will leverage internal and external opportunities to address current and emerging needs.
5-Year FASD Strategic Plan June 2015 External contractor/existing resources
O&M $10K
Enhance the performance measurement approach to better inform decision-making by updating the Initiative's logic model, and identifying, tracking and analyzing relevant indicators that focus on monitoring outcomes. Agree
  • Enhance FASD performance measurement by aligning with the strategic plan.
Performance Measurement Strategy June 2015 DG, CHP
ADM, HPCDP
External contractor/ existing resources,  O&M $10K
  • Develop an updated data collection system to adequately track, analyze and monitor performance outcomes and indicators.
Data Collection System June 2015 External contractor/existing resources $13K

1. Evaluation Purpose

The purpose of the evaluation was to assess the relevance and performance of the Public Health Agency of Canada's Fetal Alcohol Spectrum Disorder (FASD) Initiative for the period 2008 to 2013. The evaluation was conducted by the Public Health Agency of Canada and Health Canada Evaluation Directorate, as scheduled in the Five-year Evaluation Plan 2013-14 to 2017-18. The evaluation was required by the Financial Administration Act (for Grants and Contributions (G&C)) and the Treasury Board of Canada's Policy on Evaluation (2009).

2. Program Description

2.1 Program Context

FASD is a general term that describes the range of disabilities and diagnoses associated with prenatal alcohol exposure. FASD is not in itself a diagnosis.Endnote 1 The possible diagnoses within the range of disabilities include: Fetal Alcohol Syndrome, partial FAS, Alcohol-Related Neurodevelopmental Disorder, and Alcohol-Related Birth Defects.Endnote 2 FASD is the leading known cause of developmental delay in North America.Footnote A,Footnote B,Endnote 3 and is a major cause of preventable birth defects in North America.

As stated on the Public Health Agency website, "The effects of alcohol on the developing fetus can cause a range of physical disabilities, brain and central nervous system disabilities and behavioural problems. The effects that the child is born with are permanent and are known as the "primary disabilities". Secondary disabilities "are disabilities that an individual is not born with, but may develop as a result of interaction with what society expects from children as they grow and develop."Endnote 4 In clinical settings, 95 per cent of those with FASD had one or more mental health disorders.Endnote 5

The FASD Initiative was introduced in 1999 as a component of the authorities expanding the Canada Prenatal Nutrition Program (CPNP) to many jurisdictions.Footnote C There was awareness that an increasing number of women of child-bearing age and children who were likely affected by FASD were being reached by the community-based CPNP and the Community Action Program for Children (CAPC). These CPNP authorities recognized the need for additional knowledge, tools and resources to address FASD and stated the intent to capitalize on, and further develop, the expertise that was emerging in Canada and internationally. It was envisioned that this would be achieved by building on existing expertise, programs and services in provinces and territories, as well as on the work undertaken in this area by national and local organizations, including professional, parenting and caregiver associations and Aboriginal communities.

FASD activities under the expansion of the CPNP involved two branches within Health Canada: the First Nations and Inuit Health Branch and the Population and Public Health Branch. The Population and Public Health Branch funding and responsibilities were transferred to the Public Health Agency of Canada's Health Promotion and Chronic Disease Prevention Branch upon the creation of the Agency in 2004. This division of activities reflected the different mandates of the two organizations; the Health Promotion and Chronic Disease Prevention Branch is responsible for the design, delivery, and implementation of pan-Canadian FASD activities, while the First Nations and Inuit Health Branch is responsible for the design, delivery and implementation of FASD-related activities in First Nations on-reserve and Inuit communities.Endnote 6

Internal documentation indicates the mission of the Centre for Health Promotion is to: provide leadership and support within and across public health and non-public health sectors in promoting the health of Canadians and their communities. It uses an integrated approach that includes engagement with multiple jurisdictions, sectors and levels, as well as close collaboration with Health Portfolio partners and other government departments. One of the key strategic issues for the Branch is 'improving pan-Canadian System Capacity for effective health promotion policies and strategies'.

2.2 Program Profile

The aim of the Public Health Agency of Canada's FASD Initiative is to help reduce the number of individuals affected by prenatal alcohol exposure and improve the outcomes of those affected by FASD.Endnote 7 Initiative activities are guided by the FASD: A Framework for Action (2003)Endnote 8, which was developed through a national process involving both government and non-governmental organizations (NGO).Footnote D The Framework identifies five broad goals, paraphrased as: 1) increasing public and professional awareness and understanding of FASD, 2) increasing capacity, 3) creating tools, 4) expanding knowledge and 5) supporting action.

The Public Health Agency responds to the five FASD Framework goals through three groups of activities:

  • leadership, coordination and collaboration;
  • development of the evidence base; and
  • knowledge exchange facilitation.

The National Strategic Projects Fund (NSPF), contained within the Promotion of Population Health Grants and Contributions terms and conditions (renewed by the Minister in 2012),Endnote 9 is used to support these activities. The NSPF's objectivesEndnote 10 are to: improve or increase awareness and understanding of FASD, its effects, factors of risk and resources available among the public and professionals; develop and strengthen the coordinating functions that ensure access to tools, expertise and resources across Canada; address gaps and inadequacies in the system for both prevention and support; and, address gaps and opportunities to improve outcomes for those affected by FASD.

NSPF projects must be national in scope, time-limited and strategic and address at least one of the NSPF's objectives and at least one of the funding priorities established by the Public Health Agency of Canada based on identified needs of populations and/or population groups.Endnote 11 National projects are defined to be those that meet needs shared by communities across Canada while recognizing and accounting for the different challenges faced by communities in various regions. Initially, the national strategic projects had both open and directed calls for proposals. However, the last open call was in 2007 and all calls since then have been directed.

The Public Health Agency also funds activities on a contractual basis to respond to emerging priorities (through Operations and Maintenance (O&M) funds). Unspent contributions funds, for the years 2008-09 to 2010-11, were transferred to regional Public Health Agency of Canada offices in support of FASD activities and projects that could supplement existing CPNP, CAPC, Aboriginal Head Start, and Aboriginal Head Start in Urban and Northern Communities.

2.3 Program Logic Model and Narrative

The long-term expected outcome for the FASD Initiative is reduced incidence of FASD and improved outcomes of those who are affected by FASD. The logic model, shown in Appendix 1, shows how activities, outputs and immediate and intermediate outcomes are expected to contribute to the achievement of this long-term outcome.

FASD Initiative activities include:

  • Stakeholder Engagement, a key activity which takes place at both the national and regional levels. It involves developing and maintaining a variety of collaborative and cooperative relationships in order to develop common strategic directions and to delineate the roles and responsibilities of each stakeholder in achieving shared goals.
  • Coordination and Administration, involves management of the FASD funding that aims to enhance the knowledge base on FASD, build professional understanding and capacity by developing practical resources and tools for professionals, and support knowledge dissemination.

There are two streams of resulting outputs:

  • Constructive engagement and leadership:collaborative relationships, networks, coalitions, committees, inter-sectoral collaboration, and joint projects. Constructive engagement takes place through leadership at the local, regional, national and international levels.
  • Knowledge development and exchange:evidence-based products, knowledge exchange events, training, practical tools for target audiences, policies/practice guidelines.

Immediate outcomes include:

  • Target stakeholders are engaged and respond coherently to FASD priorities. This means creating stronger collaborative efforts among key stakeholders to increase their commitment to lead a more coordinated response to advance common FASD priorities and policy-relevant research.
  • Target stakeholders have access to evidence-based knowledge products and use them to prevent and address FASD. This refers to increasing knowledge development and exchange among stakeholders, including increasing access to practical tools and guidelines to prevent or address FASD.

The intermediate outcome is:

  • Public Health Capacity: Target stakeholders and health practitioners have the capacity to intervene effectively at the population (systems, policies, programs and services) and the individual levels (health and allied health professional practices). By accessing and using trans-disciplinary evidence-based tools and information, and through advancement of common priorities, the FASD Initiative allows: a) stakeholders such as other federal departments, provinces and territories, NGOs, professional associations, research and academic communities to intervene more effectively at the population level, and b) health and allied health practitioners to improve their professional practices in this area.

The intermediate outcome is expected to result in three long-term outcomes:

  • Increased awareness among women of child-bearing age of risks associated with alcohol use during pregnancy.
  • Decreased alcohol consumption rates in pregnant women.
  • Strengthened systems of support, services and resources for individuals, families and communities affected by FASD.

2.4 Program Alignment and Resources

The FASD Initiative is situated in the Agency's 2013-14 Program Alignment Architecture (PAA), under 1.2 Health Promotion and Disease Prevention, and identified as Sub-Program 1.2.2 Conditions for Healthy Living, 1.2.2.1 Healthy Child Development sub-sub program.Endnote 12

Planned and actual spending was reported by the FASD Initiative as follows:

Table 1: FASD Initiative Financial Data 2008-09 to 2012-13
Planned Budget
($ millions)
Actual Direct Spending
($ millions)
Variance (Planned - Actual)
($ millions)
YEAR G&C O&M Salaries
& EBP
Total G&C O&M Salaries
& EBP
Total Total
2008-09 1.47 .68 .63 2.78 1.30 .50 .76 2.56 .22
2009-10 1.22 .47 .74 2.43 1.22 .45 .77 2.44 -.01
2010-11 1.36 .36 .67 2.39 1.30 .40 .83 2.53 -.14
2011-12 1.40 .35 .81 2.56 1.40 .37 .88 2.65 -.09
2012-13 1.27 .17 .81 2.25 1.27 .18 .82 2.27 -.02
TOTAL 6.72 2.03 3.66 12.41 6.49 1.90 4.06 12.45 -.04

Over the period of 2008-13, the Public Health Agency spent a total of $6.49 million in grants and contribution funding, $1.90 million in Operations and Maintenance (O&M) funding, and $4.06 million in salariesFootnote E for a total of $12.45 million over five years.

3. Evaluation Description

3.1 Evaluation Scope, Approach and Design

This was a scheduled evaluation as per the Public Health Agency of Canada and Health Canada Five-year Evaluation Plan, 2013-14 to 2017-2018. The evaluation covered the period 2008 to 2013. It built on the 2008 Summative Evaluation and the recent report, The Public Health Agency of Canada's FASD Initiative: A Case Study in the Art and Science of Influencing Health Policy and Practice (2012). In addition, recommendations of the 2009 Audit of Health Promotion Programs were considered. For additional details, see Appendix 2.

The program risk assessment, conducted as part of evaluation planning, determined that the FASD Initiative was low risk due to characteristics such as the low materiality of the Initiative, the completion of an evaluation in 2008 as well as the 2012 case study, and the absence of known performance challenges. As a result of the risk assessment, it was determined that the scope of the current evaluation would be limited to issues of key importance to senior management, while still ensuring Treasury Board evaluation policy requirements were met.

The evaluation followed principles of utilization-focused practice to ensure that the information needs of the intended users would be met. A non-experimental descriptive design was used. The design was developed based on the expectations regarding the availability of data sources for addressing the evaluation questions. An assessment of data by the Evaluation Directorate prior to the initiation of the evaluation confirmed the absence of some key performance measurement data, including data to support some indicators defined in the 2006 Results-based Management and Accountability Framework. As a result, progress towards the achievement of expected outcomes was in some cases observational in nature.

The evaluation issues were aligned with the Treasury Board of Canada's Policy on Evaluation (2009) and considered the five core issues under the two themes of relevance and performance. Corresponding to each of the core issues, there were evaluation questions which were tailored to the Initiative and guided the evaluation process, as shown in Appendix 3.

The evaluation included FASD Initiative activities conducted by the Centre for Health Promotion and Regional Operations within the Health Promotion and Chronic Disease Prevention Branch. The evaluation excluded activities with respect to First Nations and Inuit communities.

Data for the evaluation were collected using multiple lines of evidence to increase the reliability and credibility of the evaluation findings. The lines of evidence included a literature review, a document review, 19 key informant interviews with 21 internal and external stakeholders, performance measurement data, and a financial analysis. Data were analyzed by triangulating information gathered from the different lines of evidence. More specific details of the data collection and analysis methods are detailed in Appendix 3.

3.2 Limitations and Mitigation Strategies

Most evaluations face constraints that may have implications on the validity and reliability of evaluation findings and conclusions. The following table illustrates the limitations in the design and methods for this particular evaluation. Also noted are the mitigation strategies put in place to ensure that the evaluation findings can be used with confidence to guide planning and decision making.

Table 2: Limitations and Mitigations Strategies
Limitations Impact Mitigation Strategies
Data structure of the financial data was not linked to outputs or outcomes Limited ability to quantitatively assess efficiency and economy Use of other lines of evidence, including key informant interviews and literature review, to qualitatively assess efficiency and economy.
Incomplete performance data:
  • Data to support indicators defined in the 2006 Results-based Management and Accountability Framework not always available
  • Output data stronger than outcome data
  • Lack of benchmarks, baselines and targets
Limited ability to measure the achievement of outcomes, particularly in the longer-term. Use of performance assessments of individual projects, as well as regional roll-ups to obtain indications of success in achieving outcomes. Use of other lines of evidence, including literature review, document review and key informant interviews to validate findings and provide additional evidence of outcome achievement.

4. Findings

4.1 Relevance: Issue #1 - Continued Need for the Program

Finding #1: FASD is considered to be the leading preventable cause of birth defects and non-genetic, developmental disability in Canada and abroad and has lifelong consequences for individuals, their families and society. Prevalence rates are unknown, but are estimated at 2 to 5 per cent of the Canadian population. Estimates on the costs of FASD in Canada range from $4 billion to $5.3 billion per year. Given these factors, there is a continued need for activities to address FASD.

Prevalence rates for FASD in Canada are estimated

Accepted prevalence rate estimates for FASD in Canada are based on research studies primarily conducted in the US and Europe in the 1980s and 1990s. The incidence of FASD occurs at a rate of 1 out of 100 live births.Endnote 13 More recent epidemiological data suggest FASD prevalence rates may be as high as 2-5 per cent, translating to between about 690,000 and 1.7 million affected individuals in Canada.Endnote 14

Studies have shown that the prevalence of FASD may be significantly higher in some Canadian sub-populations, such as rural, remote and northern communities, as well as in communities that report high levels of alcohol consumption.In their 2012-2013 Annual Report, the Canada FASD Research Network highlighted that there are currently no confirmed statistics on the number of people in Canada who have FASD.Endnote 15

Internationally, findings were similar among the countries reviewed. While the precise prevalence of FASD is largely unknown, FASD is considered to be the leading known preventable cause of birth defects and non-genetic, developmental disability in the United States, Australia, the United Kingdom and South Africa.Endnote 16

Establishing the prevalence of FASD is challenging and complex

FASD is a significant cause of developmental and cognitive childhood disabilities in Canada, representing a wide variety of adverse effects that range from mild to severe and may include physical, mental and central nervous system disabilities, such as cognitive, behavioral and emotional issues. Because of this range of adverse effects, the epidemiological data on FASD is limited in part due to different methods, criteria and precision in its diagnosis and case identification by health professionals.Endnote 17 This is further exacerbated by a lack of diagnostic capacity, subsequent treatment/intervention programs and stigma. As a consequence, some true cases may never be diagnosed and other cases may be over-estimated. This issue is particularly important when signs of FASD are interpreted without knowledge of the individual's actual exposure to alcohol.

Verification of maternal drinking can be challenging for a number of reasons. Underreporting of alcohol consumption during pregnancy may occur because of the reluctance to admit responsibility for potentially causing harm. Further, alcohol is a socially acceptable legal substance in Canada and drinking is a personal choice. As a result, it can become a contentious issue when people feel that their choice is being challenged.Endnote 18 In terms of the science on safe consumption levels of alcohol, the results are not conclusive. This plays out in parts of the medical community where the reluctance to pursue alcohol use with their own patient population or even "to acknowledge that [FASD] is a serious problem to address",Endnote 19 creates challenges for verification of usage. The differing interpretations of studies on the impact of alcohol use during pregnancy were a significant factor in the length of time it took to develop Canada's Low Risk Alcohol Drinking Guidelines. Endnote 20

A better understanding of the epidemiology of FASD and alcohol use during pregnancy may provide essential knowledge and to help enhance the understanding of the prevalence and consequences of this lifelong disability.

Impacts on Canadians

FASD has serious social and economic implications for society as well as for affected individuals and their families. The literature review noted that the societal costs of FASD are significant due to the frequency of associated secondary disabilities, and their impact on both the individual and the costs of services.

Estimates on these societal costs of FASD in Canada range from $4 billion to $5.3 billion per year.Endnote 21 This figure minimizes the real cost of FASD because it does not take into account the socioeconomic costs for families, including welfare costs, costs to the police and justice system, and costs associated with lost potential and opportunities. In comparison, the issue of obesity is estimated to cost the Canadian economy between $4.6 billion and $7.1 billion a year. The costs related to obesity include direct health-care costs and indirect costs such as lost productivity (with indirect costs comprising more than half of the total costs).Endnote 22 Recent studies conducted indicate:

  • In clinical settings, 95 per cent of those diagnosed with FASD had one or more mental disorders.Endnote 23
  • Evidence from a limited number of studies suggest that a large proportion of children with FASD (up to 80 per cent) live in institutional or foster placements or are under adoption care.Endnote 24
  • There is increasing data to suggest that a disproportionate number of people in conflict with the law have FASD. Studies of FASD among various Canadian populations estimate the rate to be ten times higher inside prisons than in the general population.Endnote 25 Sixty per cent of 12 years old who have been diagnosed with FASD have also been charged with, or convicted of, a crime.Endnote 26

Many services, treatments and medications can only be offered once the condition is diagnosed. Not being diagnosed and provided with appropriate treatment and support contributes to an increased likelihood of developing secondary disabilities. When undiagnosed or misdiagnosed, individuals with FASD frequently struggle in school. Over 60 per cent of people with Alcohol Related Neurodevelopmental Disorder between the ages of 12-51 will have disrupted school experiences such as incomplete education, thus making it additionally challenging to find and hold meaningful employment, obtain stable housing, etc.Endnote 27

FASD is a permanent, lifelong disability and most people with FASD will need health, education and social supports throughout their lives. Rather than being able to "outgrow" it, many adults face greater challenges as they get older. As adults, behaviors typical of those affected by FASD (impulsivity, poor judgment, and poor social skills) become less acceptable. In addition, as a person ages, FASD-related facial features can become less apparent, making diagnosis more difficult, thus resulting in the lack of proper treatment.

4.2 Relevance: Issue #2 - Alignment with Government Priorities

Finding #2: There are links between the existing FASD Initiative objectives and recently stated Government of Canada priorities with respect to health promotion, mental health, and violence and crime prevention. While not explicitly mentioned as a Government of Canada priority, FASD is recognized as a health, social, justice and economic problem. The objectives of the FASD Initiative are consistent with Public Health Agency priorities including health promotion, health inequalities, and children and youth.

Recently stated Government of Canada priorities with respect to health promotion, mental health, and violence and crime prevention recognize FASD as a health, social, justice and economic problem.

  • In the September 2010 Declaration on Prevention and Promotion from Canada's Ministers of Health and Health Promotion/Healthy Living, Ministers endorsed the intersectoral approach to promoting health and prevention of disease, disability and injury.
  • In terms of other federal funding linked to FASD, a new National Anti-Drug Strategy was introduced in the 2007 Speech from the Throne. Under this strategy, $9.1 million per year is provided to Health Canada to oversee the National Native Alcohol and Drug Abuse Program.
  • The 2013 Speech from the Throne reflected that it is the federal government's intention to, "take further steps to see that those traditionally under-represented in the workforce, including people with disabilities, youth, and Aboriginal Canadians, find the job-training they need."Endnote 28
  • The June 2011 Speech from the Throne indicates that: "Our Government will continue to protect the most vulnerable in society and work to prevent crime. It will propose tougher sentences for those who abuse seniors and will help at-risk youth avoid gangs and criminal activity."

The objectives of the FASD Initiative, to increase awareness and build capacity on FASD, also align well with the Public Health Agency priorities identified in recent parliamentary and corporate strategic reports. These priorities are vertically linked along the following themes: health promotion, health inequalities, and children and youth.

  • Focus on health promotion and health inequalities is combined as an Agency priority in the 2012-13 Public Health Agency Report on Plans and Priorities: "Promoting health and reducing health inequalities in Canada." At the program level, children and youth are highlighted in a commitment to: "Contribute to the reduction of health inequalities in vulnerable children (including Aboriginal children in rural, urban and northern settings) and families through the support of collaborative efforts and programs."
  • Programming for vulnerable children and youth includes the FASD Initiative, which has been frequently cited as part of Public Health Agency parliamentary reporting such as Departmental Performance Reports.
  • The objectives of the FASD Initiative align with two of the four strategic directions defined in Public Health Agency's five-year strategic plan Strategic Horizons 2013-2018 namely: (a) leadership on health promotion, disease prevention, and health protection; and (b) strengthened public health capacity and science leadership.

4.3 Relevance: Issue #3 - Alignment with Federal Roles and Responsibilities

Finding #3: The Public Health Agency is mandated to lead federal efforts and to mobilize pan-Canadian action in preventing disease and injury. The program authorities for the FASD Initiative provided a mandate to support prevention, public education, capacity building and the coordination of activities to enhance awareness of FASD and its prevention.

The Department of Health ActEndnote 29and the Public Health Agency of Canada ActEndnote 30 guide the Public Health Agency's roles and responsibilities for the prevention of illness. The Minister of Health has a broad mandate to protect Canadians against health risks. The Minister's duties, functions and powers include the promotion and preservation of the physical, mental and social well-being of Canadians. Under the leadership of the Chief Public Health Officer, and in collaboration with its partners, the Public Health Agency is mandated to lead federal efforts and to mobilize pan-Canadian action in preventing disease and injury. It is also mandated to promote and protect national public health.

The FASD Initiative is the only federal initiative with a focus on FASD. The 1999 program authorities for the FASD Initiative provided a mandate to support prevention, public education, capacity building and the coordination of activities to enhance awareness of FASD and its prevention. Part of the federal government's role is to address gaps and issues that have not been undertaken in other jurisdictions.Endnote 31 The resources requested and allocated to the Initiative, were modest for the breadth of activities to be addressed. Recognizing the limited budget, the Initiative was directed to build on established expertise across Canada and internationally, and to develop multi-sector and multidisciplinary approaches. Specifically, it was envisioned that the Initiative would enhance CPNP and other community-based programs to develop integrated sustainable approaches in such areas as prevention/education, early identification/diagnosis, integration of information/resources in existing programs/services, capacity development and research.

  • The Public Health Agency's role in addressing FASD is included in the 2003 Fetal Alcohol Spectrum Disorder (FASD): A Framework for Action.Footnote F It outlines the shared vision and roles for each jurisdiction (federal, provincial and territorial, and community).Endnote 32 The Framework highlights that the Public Health Agency undertakes and supports policy development, research, knowledge transfer and exchange, and project funding. However, mindful of the breadth of activities associated with the Initiative, it notes, "By definition, it is broad, loose, non-directive and full of ideas.Endnote 33
  • An environmental scan confirmed that some provinces have developed a FASD strategy to govern provincial work (e.g. British Columbia, Alberta, Saskatchewan and Manitoba). However, most provinces and territories have established public awareness campaigns to increase awareness of FASD as well as provide support to communities in their efforts to address FASD.

In the Agency's 2010 Annual Report, the Chief Public Health Officer stated, "Prevention of FASD is complex and requires...a mix of service providers."Endnote 34 The federal government has a legitimate leadership and coordination role in identifying emerging societal issues, devising national strategies and assessing and encouraging innovative ways of responding to these issues. In Canada, federal leadership on FASD as a public health issue takes place within the context of the shared responsibility for public health. The federal public health role in this area does not duplicate existing provincial or territorial roles, nor does it duplicate activities currently being conducted.

  • All levels of the public health system (federal, provincial/territorial and local) have a role to play. In general, the provinces and territories are responsible for the delivery of health care and social services. Primary prevention services and assistance for individuals and families affected by FASD are delivered at the local level, for example through front-line public health professionals. Public health practice also relies heavily on collaboration among government and non-governmental organizations, such as professional associations.
  • Notably, because of the multi-disciplinary and multi-sectoral (health, social services, justice, etc.) nature of the responses required to address the consequences of FASD, the Public Health Agency has a unique role. The Public Health Agency can provide national leadership to facilitate engagement, research and information exchange across jurisdictions and sectors, and provide national coordination to support partnerships with other jurisdictions and sectors to develop innovative solutions.

There was also agreement among interviewees that there is a role for the federal government in addressing FASD, and that the Public Health Agency is the appropriate federal lead. All interviewees supported a multifaceted role for the Public Health Agency in delivering the FASD Initiative. Federal work on prevention and awareness was highlighted by several interviewees as a needed role for PHAC, even though many (but not all) provinces and territories had their own awareness campaigns. They also stressed the importance of the Agency's role in continuing to raise the profile of FASD and, in provinces and territories where it is still not a priority, continuing to build commitment and support for action to establish a level playing field across the country.

The federal role identified by key stakeholders included:

  • Provide national leadership on the issue of FASD through the provision of national directions, priorities and position statements. This would also include raising the profile of FASD, raising the level of engagement and ensuring it stays on the federal agenda.
  • Act as a national coordinator for the issue of FASD, ensuring a multidisciplinary and multi-level (i.e. provinces, territories and community level) approach that includes groups from across the country. Help ensure that there is no duplication of efforts and that work is complementary.
  • Support evidence-based practice through development and sharing of resources. Research and projects supported by the FASD Initiative are seen as being needed to fill gaps. The type of research that should be supported by the FASD Initiative was defined as being 'translational in nature' or 'broad-based development work' (as opposed to medical, experimental or clinical research). This would include epidemiology, baseline data, data on incidence and prevalence, national guidelines and tools, best practices for interventions, etc.
  • Support provinces and territories, depending on their capacity, on the issue of FASD. This effort could include raising the profile and understanding of FASD, building capacity, sharing resources between and across provinces and territories, and supporting development and sustainability of regional FASD groups.

Interviewees were in agreement that the FASD Initiative is appropriately located within the Public Health Agency rather than another federal organization. Public health is seen as being able to span sectors, taking into account physical, mental and social factors and the social determinants of health.

Challenges

The FASD Initiative is currently housed within the Centre for Health Promotion at the Public Health Agency. The Centre's mandate is to: provide leadership and support within and across public health and non-public health sectors in promoting the health of Canadians and their communities. It uses an integrated approach that includes engagement with multiple jurisdictions, sectors and levels, as well as close collaboration with Health Portfolio partners and other government departments. One of the key strategic issues for the Branch is 'improving pan-Canadian System Capacity for effective health promotion policies and strategies'.Endnote 35

The Public Health Agency has a very broad mandate related to FASD, covering many different facets. This mandate appears to be beyond what is realistic, given the available resources. As a result, it will be important for the Initiative to prioritise activities. Additionally, there are activities that fall outside of the Centre's established role. For example, epidemiological work, including developing data on incidence and prevalence falls outside of this role. In addition, some tools that are needed to respond to early identification and diagnosis may also fall outside of the scope of the Centre's established role.

Finding #4: The approach of the FASD Initiative is consistent with critical factors for social change and with international federal approaches in the United States and Australia

The approach of the FASD Initiative reflects critical factors for social change. The Public Health Agency of Canada's A Case Study in the Art and Science of Influencing Health Policy and Practice describes a framework for social innovation or change called 'collective impact' and concludes that those involved in the FASD Initiative have achieved many of the conditions for successful collective impact. The five conditions outlined in the theory include: common agenda and shared vision, mutually reinforcing activities (clear roles), continuous communication, shared measurement systems, and a backbone support organization. This evaluation also found evidence that the Initiative has met most of these conditions. For example, the Public Health Agency of Canada's 2003 Fetal Alcohol Spectrum Disorder (FASD): A Framework for Action outlines the common agenda for FASD in Canada, including vision and roles. According to interviewees, this Framework remains relevant and is still used by stakeholders today. As described in Section 4.4 of this report, the Public Health Agency has been successful in facilitating communication among relevant stakeholders, both horizontally across the federal government and vertically with other levels of government, NGOs and other stakeholders. In terms of the 'backbone support organization', according to interviewees, the Public Health Agency of Canada is seen as the lead for the issue of FASD. Many interviewees expressed concern that without the FASD Initiative in place, progress on the issue of FASD could be lost. The only condition for which evidence is not as apparent is 'shared measurement systems'. Although many groups are evaluating and sharing results, there is not a common system of performance measurement.

In terms of other jurisdictions, based on available information it appears that both the United States and Australia have federal approaches to FASD similar to Canada's (see Appendix 4 for further detail). Both countries appear to have a federal approach that includes a range of activities related to FASD including awareness and prevention, national coordination, and information sharing. For example, in the United States, the Substance Abuse and Mental Health Services Administration (SAMHSA), which is an agency within the United States Department of Health and Human Services, has a Fetal Alcohol Spectrum Disorders (FASD) Center for Excellence. The FASD Centre has a comprehensive web page that includes resources targeted at a range of stakeholders (from community members to service providers). In addition, it includes a nation-wide map with information on progress made and lessons learned for all states and territories.

4.4 Performance: Issue #4 - Achievement of Expected Outcomes (Effectiveness)

An assessment of the outcomes as described in the FASD logic model (Appendix 1), proved problematic from an evaluation perspective. Sometimes it was difficult to match certain lines of evidence to particular outcomes. For example, the second immediate outcome includes both 'access' and 'use'. Typically one would see 'access' at a lower outcome level followed by 'use' in the next level. The concept of 'use' fits more closely with building public health capacity (i.e. how tools are used by public health professionals), which is an intermediate outcome in the logic model. Therefore, the evaluation considered the inter-related nature of the FASD Initiative intended outcomes in its assessment.

The evaluation identified evidence from the document and literature reviews, performance measurement reports and key informant interviews that the Public Health Agency has made progress towards the achievement of the FASD Initiative's immediate and intermediate outcomes. There was less evidence for the long-term outcomes. No unintended outcomes or impacts were identified.

4.4.1 To what extent have the immediate outcomes been achieved?

Immediate outcome: Target stakeholders are engaged and respond coherently to FASD priorities

Finding #5: FASD's multisectoral activities have led to enhanced partnerships and credibility in the Public Health Agency's approach to FASD. Target stakeholders appear to be engaged and are responding coherently to FASD priorities. While there were many anecdotal examples of the impact of collaboration on FASD activities, systematic tracking of networking and leadership activities, and their results, was limited.

According to the FASD Initiative's logic model narrative, the immediate outcome "target stakeholders are engaged and respond coherently to FASD priorities" means "creating stronger collaborative efforts among key stakeholders to increase their commitment to lead to a more coordinated response to advance common FASD priorities and policy relevant research".

The program theory of the FASD Initiative is based upon a Population Health Approach, recognizing that alcohol use in pregnancy is found across the population. A broad-based awareness and understanding of FASD is required, as are multi-level, multi-sectoral strategies to address alcohol use. Addressing the issue of supporting those diagnosed with FASD is multidisciplinary in nature and not limited to the health portfolio; it also involves education, justice, employment, homelessness, etc. As several key informants noted, FASD is an illness that follows an individual from birth to death, and the impacts can become more severe as the individual reaches adulthood. As a result, it is necessary to engage stakeholders across a range of disciplines and organizations.

FASD groups

Stakeholder engagement has occurred in large part through the participation on FASD-related groups. Public Health Agency Initiative staff and regional FASD leads were involved in a minimum of fifteen FASD groups across Canada for the period 2008-13.Endnote 36 Approximately half of the groups were created after 2008. Regional FASD leads initiated the development of six of the fifteen groups. The main shared objective across all of these groups was to collaborate on FASD issues in order to have an integrated approach to specific projects and service delivery.

These groups were reported to be useful to prevent silos and duplication, access the work of others (nationally and internationally), identify gaps needing to be addressed, and find opportunities to work together. Many key informants stated that the Public Health Agency has been effective in engaging stakeholders across a range of disciplines which has resulted in a raised profile of FASD in areas where it had not previously been acknowledged. For example, one interviewee indicated that the FASD Initiative brought groups together within and across projects and fields, including medicine, social work, psychiatry, psychology and hard sciences, which led to improvements in the quality of the research work being conducted. Other interviewees described progress that has been made to get FASD acknowledged as an issue within the fields of education and justice.

The Federal Interdepartmental Working Group on FASD, led by the Public Health Agency, is an example of the integrated and collaborative approach of the FASD Initiative. The Interdepartmental Working Group was established to provide coordinated leadership for the Government of Canada on issues related to FASD. It includes representatives from a variety of federal organizations including Health Canada, Employment and Social Development Canada, Status of Women Canada, Department of Justice, Public Safety Canada, and Aboriginal Affairs and Northern Development Canada. The Interdepartmental Working Group has links to other groups with which the FASD Initiative is engaged, as well as informal links, through the FASD Initiative manager, with other FASD groups such as the Canada FASD Research Network and Neurodevelopment Network Canada. Further, some Interdepartmental Working Group representatives from other federal government departments have established their own links with relevant groups (e.g. provincial FASD groups). One interviewee indicated that through participation on the group, Health Canada was able to connect with the Department of Justice and now participates in some Justice-led meetings, and that Health Canada was able to share information on work done by the Correctional Service of Canada with interested NGOs.

Funded Projects

Collaboration and a multisectoral approach were also running themes in projects funded through the FASD Initiative. For example, groups that were engaged through the NSPFFootnote G during the evaluation period represented regions from across Canada, and a variety of disciplines. The reach of collaboration also extends beyond the FASD Initiative's direct relationships with these funded groups. According to the Public Health Agency Regional/National Highlights Report, which summarised results from some regional and national projects, a range of organizations partnered with groups that received funding from the FASD Initiative, for example: Aboriginal organizations/friendship centres, experts in a specific field, researchers, not-for-profit groups, volunteer groups or service organizations (e.g. FASD support groups), family resource centres/early childhood centres/daycares, child protection services and educational institutions. Interviewees also identified funded projects as making an important contribution to stakeholder engagement.

This theme of using collaboration and partnerships to advance FASD activities included training and attendance at conferences. Several interviewees from other parts of Canada, and an international interviewee, identified the importance of FASD Initiative staff being present at conferences and other gatherings in order to facilitate relationships and synergies of approaches.

Finally, several interviewees highlighted the importance of the Public Health Agency of Canada regional FASD leads in contributing to communication and collaboration through informal relationships, and the accessibility and helpfulness of FASD Initiative staff.

Challenges

While there were many anecdotal examples of the impact of collaboration on FASD activities, systematic tracking of networking and leadership activities, and their results, was limited. The evaluation may have found stronger evidence of the impact of collaborative activities in terms of increased prioritization or awareness of FASD issues if the tracking of activities (such as records of meetings, decisions, and follow up to actions taken) was more systematic. This would include tracking of national and Regional Operations' collaborative activities, which would include FASD-related activities with CPNP. These activities appear to have played a key role in achieving this and other outcomes.

A few interviewees also shared ideas for improving the FASD Initiative's stakeholder engagement. Raising the level of representation on FASD groups, and getting support and participation at more senior levels within federal and provincial/territorial organizations were suggested as being critical to the success of FASD activities, particularly in terms of getting FASD to be a priority on federal and provincial/territorial agendas. In addition, increasing the frequency of Interdepartmental Working Group meetings to quarterly was suggested as a way of allowing meetings to have a more specific focus so that additional stakeholders could be engaged on certain subject areas. For example, the Canadian Medical Association or the Council of Chief Medical Officers of Health could be included both to provide medical advice and guidance and to facilitate messaging and information related to professional practice.

Although interviewees were positive about the progress the FASD Initiative has made with regard to collaborative efforts and co-ordinated responses, there was agreement across all respondents that ongoing work was needed to keep existing stakeholders engaged and to involve additional stakeholders.

Immediate Outcome: Target stakeholders have access to evidence-based knowledge products and use them to prevent and address FASD

Finding #6: The Public Health Agency has worked with key partners and stakeholders to develop knowledge products that focus on secondary prevention, such as guidelines, screening and diagnostic tools. These products are perceived as filling gaps in knowledge and focussed primarily on information for health professionals.

The logic model narrative describes this outcome as "increasing knowledge development and exchange among stakeholders, including increasing access to practical tools and guidelines to prevent or address FASD".

Between 2008-09 and 2012-13, the FASD Initiative produced a wide range of knowledge products and actively supported knowledge exchange events, primarily aimed at supporting the prevention, screening and diagnosis of FASD as well as investigating its prevalence. There were sixteen active National Strategic Project Fund contribution agreements during this period with a range of organizations such as provincial ministries, universities and health-related NGOs. A review of Initiative documentation noted a minimum of thirteen contracts and participation or support for at least sixteen conferences that drew on operational funds. It is apparent that many FASD products were interrelated in nature, with several examples of leveraging in their development, as noted in the examples below.

Funded Projects

The National Screening Tool Kit for Children and Youth Identified and Potentially Affected by Fetal Alcohol Spectrum Disorder (FASD) was one knowledge product resulting from contribution funding. The primary objectives of this project were to survey and critically evaluate FASD screening tools and methods, evaluate the practical value of these tools, and develop practical guidelines (tool kit) based on the identified and evaluated tools. Five screening tools were produced as part of the toolkitFootnote H and were shared with stakeholders through eleven webinars in 2011.

Training modules and other materials developed through funded projects also contributed to capacity development. For example, the NSPF funded a project to deliver nationally accredited train-the-trainer continuing medical education workshops on Pregnancy-Related Issues in the Management of Addictions. Fourteen sessions were provided across Canada to over 500 health and allied health providers, followed by 474 community presentations to about 6,000 front line care providers. Additionally, the project to develop Alcohol Use in Pregnancy Consensus Clinical Guidelines for screening women on alcohol use included professional development material and an online accredited course which had 589 participants in the first two months. It was reported that Health Canada's First Nations and Inuit Health Branch provided supplementary funding to the Canadian Association of Paediatric Health Centres where they funded the development of a First Nation-specific element of the National Screening Tool Kit for Children and Youth Identified and Potentially Affected by Fetal Alcohol Spectrum Disorder (FASD) called the Medicine Wheel Screening Tools for FASD screening.

The Public Health Agency funded activities on a contractual basis to respond to emerging priorities. One of the key products, the FASD Prevention: Canadian Perspectives Publication, was designed for those working in FASD prevention. This activity resulted from a 2008 workshop on FASD prevention presented at a national-level continuing education event for health professionals, which then led to a collaborative expert-group process and the creation of this key product. It describes lessons learned about FASD prevention, and provides a four-part framework for prevention. It was disseminated to relevant stakeholders by the Public Health Agency of Canada and partners at FASD-related conferences and workshops, was posted on the Public Health Agency of Canada's website, and was provided in response to requests. Other examples of knowledge products resulting from these types of funded projects are:

  • Reports on the economic impact of FASD, including, for example, direct healthcare, child care and law enforcement costs, and indirect costs related to loss of productivity;
  • Report on trends, patterns and influences on risky alcohol use by women of child-bearing age;
  • Report on early primary school outcomes associated with maternal use of alcohol and tobacco during pregnancy and with exposure to parent alcohol and postnatal tobacco use; and
  • Case studies on how seven different communities across Canada have mobilized a response to FASD (used as examples for other communities).

Of interest in relation to knowledge products, a charitable National Organisation for Foetal Alcohol Syndrome in the United Kingdom (UK), NOFAS-UKEndnote 37 (2013), produced a publication on FASD that indicates that Canada is "producing some of the leading FASD experts and promising innovations" (p. 2). This study identified Canada as having produced the second most FASD studies worldwide during the previous 6 months.

Challenges

Unfortunately a comprehensive inventory of projects and activities funded through regional transfers during the evaluation timeframe was not available. The Regional/National Highlights Report found that most national projects were reported to have produced knowledge products (evidence products (56 per cent) and frameworks (17 per cent)). In contrast, 8 per cent of regionally-funded projects and activities were reported to have produced evidence products and 5 per cent were reported to have produced frameworks.Footnote I This difference was thought to have resulted from the planned national focus on knowledge generation, compared to the regional focus on dissemination of knowledge products.

There was strong agreement among interviewees that although the availability of knowledge products has improved, research on incidence and prevalence and drinking rates is inconclusive, and there are still major gaps in data related to FASD (e.g. diagnosis, awareness of risks of alcohol during pregnancy, best practices on prevention and interventions).

4.4.2 To what extent have the intermediate outcomes been achieved?

Intermediate outcome: Strengthened public health capacity in the area of FASD.

Finding #7: When tested, knowledge products developed as a result of the FASD Initiative appear to be used by segments of the target audience. However, there is limited evidence as to how widespread the distribution and use of these products is among respective target populations.

Within the context of the Initiative, strengthened public health capacity is defined by the use of knowledge products developed as a result of the FASD Initiative by target stakeholders such as provinces and territories, NGOs, professional associations, other federal departments. The use of these knowledge products is expected to yield more effective interventions at the population level and to improve the professional practices by health practitioners in this area.
Several lines of evidence suggest that the products are being used by target audiences, once they are aware of the products, to enhance decision making and public health practice:

  • A survey of webinar participants was conducted in 2013Footnote J and over half (54 per cent) of respondents indicated that the National Screening Tool Kit for Children and Youth Identified and Potentially Affected by Fetal Alcohol Spectrum Disorder (FASD) and associated webinars were beneficial to their work or that of their organization.Endnote 38
  • A survey of known recipients of the FASD Prevention: Canadian Perspectives Publication, updated in 2013,Footnote K revealed that approximately two thirds reported adopting approaches outlined in the publication as part of their regular work, and indicated that they planned to use or continue using the publication.Endnote 39

Other evidence supporting the generation and usefulness of knowledge products is the citation of these products in a variety of journals and other publications. Examples include:

  • The National Screening Tool Kit for Children and Youth Identified and Potentially Affected by Fetal Alcohol Spectrum Disorder (FASD) was found to have been cited over twenty times, in journals (such as The Canadian Journal of Clinical Pharmacology, Journal of Psychiatry and Law, Canadian Journal of Public Health), and at conferences (such as an Institute of Health Economics conference).
  • Alcohol Use in Pregnancy Consensus Clinical Guidelines was cited in the Journal of Obstetrics and Gynaecology Canada.
  • Pregnancy-Related Issues in the Management of Addictions Train-the-Trainer and Evaluation Project was cited in four publications.

Direct training opportunities also appear to impact public health capacity on an individual level. The Quebec Regional Office surveyed those who took part in FASD-related training activities.Footnote L Participants represented a variety of sectors including health and social services, Aboriginal communities, justice and education. While the sample size was small, findings demonstrate improved capacity both at individual and organizational levels. Participants indicated that as a result of the training opportunities they had built knowledge, integrated FASD knowledge in their professional practice or intended to do so, increased their intervention capacity, become more familiar with FASD resources available, and had used or planned to use the products in their own professional practice.Endnote 40

Key informants also provided indications of how the FASD Initiative has improved public health capacity. The Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis were cited by several interviewees as improving capacity. From a justice perspective, for example, the guidelines are seen as impacting practice because they provide scientifically verifiable results that can be taken before the court. Other key examples of improved capacity resulting from the FASD Initiative described by interviewees included:

  • The Public Health Agency of Canada supported the 2009 and 2013 Conferences of the Canadian Institute of Health Economics, the latter of which led to 62 recommendations related to FASD including detailed suggestions for criminal code amendments.
  • The use of an FASD screening tool by probation officers and the adaptation and adoption of the tool by other jurisdictions.
  • Alcohol Use in Pregnancy Consensus Clinical Guidelines and the training module Preventing and Addressing Alcohol Use in Pregnancy were reported to be referenced in letters to family physicians to support screening and brief intervention in primary care.
  • Alcohol Use in Pregnancy Consensus Clinical Guidelines were reported to have made an important contribution to perinatal care in British Columbia.
  • The Public Health Agency of Canada's support was reported to have contributed to the development of provincial FASD strategies.

Challenges

Several interviewees commented that although progress has been made, there is still work to be done to improve capacity. Physicians, for example, were mentioned as a group that could have more consistent messaging about alcohol consumption, as several interviewees believe that some doctors continue to inform women that moderate alcohol consumption is acceptable during pregnancy. This perception is supported by literature in this area.Endnote 41

Evidence provided to assess the use of knowledge products tended to be limited or anecdotal in nature. Part of the difficulty lies in the lack of evidence of the reach of products developed, especially for key stakeholders like health professionals who are responsible for screening for, or diagnosing, FASD. This may result, in part, from the difficulties of diagnosing FASD in determining the prevalence (see Section 4.1).Endnote 42

4.4.3 To what extent have the long-term outcomes been achieved?

Long-term outcomes: Decreased alcohol consumption rates in pregnant women, increased awareness among women of child-bearing age of risks associated with alcohol use during pregnancy; and strengthened systems of support, services and resources for individuals, families and communities affected by FASD.

Finding #8: There was limited information on the achievement of long-term outcomes. Data on alcohol consumption and awareness rates were not available, although literature on alcohol consumption during pregnancy and awareness rates indicate that, while women acknowledged the risks and consequences of drinking alcohol during pregnancy, many still held common misconceptions.

FASD is a complex issue, further complicated by a number of interrelated factors including the underlying determinants of health and risk factors and barriers such as social stigma experienced by vulnerable women and children in accessing support and services. It is important to appreciate that the prevention of FASD is about more than alcohol use and requires an understanding and response to the reasons why some women may consume alcohol during pregnancy. In the Public Health Agency's 2010 Annual Report, the Chief Public Health Officer stated, "Prevention of FASD is complex and requires a holistic and multi-factorial approach that includes a variety of intervention tactics and a mix of service providers".Endnote 43

Several key informants discussed the complexity of the issue of drinking during pregnancy raising issues such as trauma and the influence of the determinants of health. It is recognized that FASD is often experienced in combination with a range of other health and social issues faced by pregnant women.Endnote 44

This is corroborated by the findings of research conducted on women's knowledge, views and experiences regarding alcohol usage during pregnancy.Endnote 45 The study suggests that while women acknowledged the risks and consequences of drinking alcohol during pregnancy, many held common misconceptions (such as the safety of wine consumption during pregnancy versus other alcoholic products). The literature also indicates that some women continue to drink during pregnancy or expressed intent to continue drinking until their pregnancy was confirmed. It was also found that women's partners, families, and friends influence women's decisions to drink or abstain from alcohol.

Finding #9: Anecdotal information provided through key informant interviews suggested that FASD Initiative activities contributed to strengthened systems of support, services and resources for individuals, families and communities affected by FASD.

In terms of the long-term outcome of strengthened systems of support, services and resources for individuals, families and communities affected by FASD, several interviewees were of the view that the FASD Initiative has contributed to the achievement of this outcome. Examples included:

  • One interviewee described web-based training for caregivers of individuals affected by FASD, indicating that the accessibility of training is often an issue for caregivers. As a result, the training was designed so that it could be accessed from a home computer. Although initially supported through funding from the FASD Initiative, this project has now gained support through another group, ensuring its sustainability.
  • Institut national de santé publique du Québec (INSPQ) and the Quebec government developed From Tiny Tot to Toddler, a guide for parents from pregnancy to age two.Footnote M Quebec Regional Office worked with INSPQ to update messaging on FASD (no known safe limit for alcohol consumption). This resource was initially provided to each woman who gives birth in Quebec, and is now given to each pregnant woman at her first doctor's appointment.
  • In collaboration with a hospital in Montreal, a social paediatrics centre has recently started offering services to families whose children were exposed to alcohol and drugs during pregnancy. This model was inspired by the Breaking the Cycle program in Ontario which is working on a project that will see the opening of a clinic similar to Best Start in Ontario.Footnote N

4.5 Performance: Issue #5 - Demonstration of Economy and Efficiency

The Treasury Board of Canada's Policy on Evaluation (2009) and guidance regarding Assessing Program Resource Utilization When Evaluating Federal Programs (2013) defines the demonstration of economy and efficiency as an assessment of resource utilization in relation to the production of outputs and progress toward expected outcomes. This assessment is based on the assumption that departments have standardized performance measurement systems and that financial systems link information about Initiative costs to specific inputs, activities, outputs and expected results.

The data structure of the detailed financial information provided for the Initiative did not facilitate the assessment of whether Initiative outputs were produced efficiently, or whether expected outcomes were produced economically. As a result, the evaluation provides observations on economy and efficiency based on findings from the key informant interviews and available relevant financial data.

Finding #10: In spite of the modest budget for the Initiative, there is evidence of the production of numerous outputs and progress towards the achievement of planned outcomes. The evaluation identified evidence of leveraging funds from other groups, expertise and other resources, as well as efficiencies gained through operational approaches.

Cost savings of a preventative approach

Given the costs of FASD to society and individuals, as discussed in section 4.1, the annual investment of approximately $2.5 million annually to prevent FASD and minimize associated issues should lead to longer term cost savings. The literature suggests that FASD programs are good value-for-money and that the resulting savings to society can be well in excess of funds invested. For example, one study suggested that if one case of FASD was prevented, then the estimated cost avoidance for this one condition would be $15,812 per year per individual.Endnote 46

Variances in spending

The original 1999 allocation was $3.3 million annually to undertake activities to address FASD. As with all programs, there is a reduction in the amount of funds that are provided to the program area due to corporate levies and internal reallocation. Since 1999, the original funds were also subject to Government-wide budgetary reductions due to broader reviews. The planned budget for the FASD Initiative was therefore approximately $2.5 million annually (a total of $12.4 million between 2008-09 and 2012-13). This budget covered the same activities as outlined in the original allocation.Footnote O

Taking into account the amount of planned funding received by the program for the FASD Initiative, the variances between planned and actual spending are minimal.

Table 3: FASD Initiative Financial Data 2008-09 to 2012-13
Planned Budget
($ millions)
Actual Direct Spending
($ millions)
Variance (Planned - Actual)
($ millions)
YEAR G&C O&M Salaries
& EBP
Total G&C O&M Salaries
& EBP
Total Total
2008-09 1.47 .68 .63 2.78 1.30 .50 .76 2.56 .22
2009-10 1.22 .47 .74 2.43 1.22 .45 .77 2.44 -.01
2010-11 1.36 .36 .67 2.39 1.30 .40 .83 2.53 -.14
2011-12 1.40 .35 .81 2.56 1.40 .37 .88 2.65 -.09
2012-13 1.27 .17 .81 2.25 1.27 .18 .82 2.27 -.02
TOTAL 6.72 2.03 3.66 12.41 6.49 1.90 4.06 12.45 -.04

Leveraging of resources and operational approaches

Based on available data, the FASD Initiative appears to be an efficient and economical initiative. In spite of the limited budget for the Initiative, there is evidence of the production of numerous outputs and progress towards the achievement of planned outcomes. However, the wide scope of activities required under the FASD Initiative authorities is challenging, given the allocated resources. The evaluation found evidence of leveraging funds, expertise and other resources from other groups, as well as efficiencies gained through operational approaches, as described below.

Many interviewees discussed the importance of the FASD Initiative funding, which often acts as 'seed money', in encouraging other groups to get involved and to offer additional funding or in-kind resources. Some examples of leveraging provided by interviewees and identified through the document review included:

  • The Public Health Agency provided funding for the development of a model for management plans (including returning adults in Yukon correctional facilities to society) and diagnostic training. A small portion of the funding (seed money) was used for a prevalence study. The project is led by the Yukon Government which was able to provide some additional funding and in-kind human resources and support.
  • Partners at an Ontario University provided in-kind resources including their time and analyses of data.
  • Key provincial stakeholders have taken on the task of keeping 'community of practice' information current, since it needs to be updated on an ongoing basis in order for it to remain useful.
  • Resources were leveraged as part of the Ontario-wide FASD awareness campaign, including financial support from other groups, as well as in-kind resources including free media.
  • An online accredited course on the Alcohol Use in Pregnancy Consensus Clinical Guidelines use was produced with $30,000 worth of in-kind services from mdBriefCase.

Many interviewees discussed the importance of the FASD Initiative, as well as the networks and relationships, in helping to identify opportunities for gaining efficiencies. Significant examples of efficiencies described by interviewees included the following:

  • The meconium testing project piggy-backed onto the existing Health Canada Maternal-Infant Research on Environmental Chemicals Study (MIREC Study), which was already collecting meconium to test for other exposures, such as environmental contaminants. According to the interviewee, this meant saving hundreds of thousands of dollars because they were able to obtain findings on prenatal alcohol exposure from existing samples rather than collecting samples themselves.
  • For a project on neuropsychological testing, costs and response burden were reduced by using existing data from relevant centres across the country, rather than engaging in new data collection.
  • Another project was able to leverage support from a stakeholder to extract provincial data from existing databases, rather than collecting the data directly.

Finding #11: Although the program authorities outlined the link between FASD and CPNP, little information was available on the vision and benefits for linking these programs. There are still leveraging opportunities and performance measurement activities which could enhance how the Initiative operates in the future.

There was limited information on leveraging other areas for FASD activities. As the program authorities outlined the link between FASD and CPNP, little information was available on the vision for linking the two programs. In addition, although determining incidence and prevalence of FASD nationally was outlined in the program authorities, there was little interaction between the FASD Initiative and some similar Public Health Agency surveillance programs, such as the Maternity Experiences Survey or the Perinatal Health Indicators for Canada 2013 (part of the Canadian Perinatal Surveillance System).

Follow-up to the 2008 evaluation of the FASD Initiative

The 2008 Summative Evaluation of the FASD Initiative resulted in six recommendations. The Initiative managers agreed to the recommendations and developed a Management Response and Action Plan to address them. Generally, this current evaluation found that many of the agreed-upon actions in response to the recommendations in the 2008 Summative Evaluation have been taken. This includes working with other government departments and helping to ensure coordination and collaboration, as described in section 4.4, strategically selecting projects and activities that support priorities in the 2003 Framework for Action, and taking steps to improve tracking of projects. As discussed in the following section, there are still some issues with the implementation of a data collection tool for tracking all FASD projects.

Performance Measurement

As discussed above, the logic model developed for the Initiative appears to have multiple outcomes that mix immediate and intermediate outcome levels, making performance measurement and evaluation difficult. Although useful performance measurement efforts were made, especially those in response to the 2008 evaluation, performance information for stated outcomes was still incomplete. For example, not all key knowledge products are tracked for reach and usefulness, which are key outcomes for the Initiative. It also appears that Public Health Agency networking/engagement activities were not tracked systematically, including those undertaken by Regional Operations.

The Individual Project Reporting Tool (IPRT) was produced in response to the 2008 evaluation as a way of tracking information on funded projects. According to Initiative staff, it is an "evergreen" tool that can be revised as needed. The current evaluation found that although the IPRT allowed for the collection of some of the recommended data, there were issues with the tool. Some questions contained in the IPRT had a lack of clarity in definitions, for example, training is included under capacity building in one section of the tool, but under knowledge exchange in another section. Further, the Regional/National Highlights Report that summarized results of the IPRT showed that questions with similar response categories yielded different findings. For example, two questions on objectives included response categories related to capacity, yet the results were different. Finally, the summary report did not provide an inventory of funded projects, nor did it include descriptive information on each project or activity funded through the NSPF, O&M or the use of regional O&M (not transferred but part of the regional office base O&M funding).

Although evidence was available related to leveraging, the Initiative could benefit from systematically tracking leveraged financial and in-kind resources. This might provide the Initiative with information that would be useful for planning, and would assist future evaluations in more thoroughly assessing the efficiency and economy of the Initiative.

5. Conclusions

5.1 Relevance Conclusions

There is a continuing need for activities to address FASD. FASD is a major cause of preventable birth defects and childhood disabilities among Canadian children and has lifelong consequences for individuals, their families and society.

The FASD Initiative is broadly aligned with many Government of Canada and Public Health Agency health promotion priorities. There is a leadership role for the Government of Canada and the Public Health Agency of Canada in relation to FASD which has been clearly articulated in program authorities, although this role covers a wide breadth of activities including prevention/education, early identification/diagnosis, integration of information/resources in existing programs/services, capacity development and research.

When examining current needs and gaps in knowledge, many of the issues raised in the original program authorities still exist. Some of these activities fall outside of the mandate of the Centre for Health Promotion, where the FASD Initiative currently resides. It may be time for the Centre to review what activities fit within the scope of their mandate, and, what is critical and feasible to achieve within the current resource allocation.

5.2 Performance Conclusions

FASD is a complex and multi-faceted issue, presenting significant challenges along the entire continuum of awareness, diagnosis and treatment. It would be challenging to address this continuum of activities within the allocated budget for the Initiative. However, the FASD Initiative is making solid progress in its efforts to address FASD and there are many examples of success outlined in the body of the report. There is evidence that the Public Health Agency has produced, either directly or indirectly, knowledge products for relevant populations, such as health professionals. Some of these products should lead to addressing one of the current gaps in FASD - improving diagnostic tools in order to develop prevalence data. There is evidence, although limited and/or anecdotal in nature, that these products are being used to further understanding on FASD. Many of those who have access to these products state that they have or will use them to improve their own policies or practices.

There was limited data available to assess the long-term outcomes of the FASD Initiative, although there is evidence that alcohol use during pregnancy continues to occur. While the Public Health Agency has developed knowledge products in the area of prevention, screening and diagnosis, and the prevention of primary and secondary disabilities resulting from FASD, little information is available about how widespread the use of these tools is in addressing FASD, particularly within certain target populations such as health professionals. In addition, there may be opportunities, considering the original vision and limited resources available for the Initiative, to leverage activities through similar programs.

The FASD Initiative appears to provide good value for money; it is seen as a well-respected Initiative that is making significant achievements across the country in spite of a budget that does not match the breadth of its mandate. There may be opportunities, considering the original vision and limited resources available for the Initiative, to leverage activities through similar programs. Additionally, prioritising activities, based on the budget available, will better position the Initiative to have an impact on FASD.

6. Recommendations

Recommendation 1

Taking into account advancements and lessons learned as well as existing gaps, revisit the Initiative's strategic approach to addressing FASD and develop an action plan to prioritize activities. This plan may include:

  1. Enhancing the focus on upstream prevention, as per the mandate of the Centre for Health Promotion.
  2. Identifying linkages to the Centre for Chronic Disease Prevention as part of their lead role in surveillance.
  3. Identifying knowledge translation and exchange activities that would maximise the usefulness of key knowledge products. Opportunities to leverage activities through the Public Health Agency's children's programs should be included where appropriate.
  4. Developing a stakeholder engagement strategy for internal and external stakeholders to ensure collaborative efforts remain sustainable. This strategy should determine important relationships for the distribution of key knowledge products to ensure they reach and are used by target populations.

Over the past 15 years, the Initiative has undertaken and delivered on an ambitious mandate based on the wide number of activities that are needed to address FASD. These needs still exist today. Part of the issue is the complexity of FASD and the whole continuum along which there is a need for prevention activities (such as those focussing on child-bearing aged women, infants born with FASD, and children and adults affected by FASD).

To address these issues, the Public Health Agency has fostered productive multisectoral relationships. Knowledge products have been developed and these should advance public health policies and practices. Considering the work that has occurred, there is now an opportunity to take stock of how the Initiative evolved over time, and revisit/reaffirm the internal short- and long-term strategic directions of the FASD Initiative which fit within the Public Health Agency's mandate and the mandate of the Centre for Health Promotion and focus on upstream prevention work to promote the health of Canadians and their communities.

It will be critical to continue to target limited resources, and leverage opportunities within and external to the Public Health Agency, to where this federal initiative can best address current and emerging FASD needs in Canada.

Recommendation 2

Enhance the performance measurement approach to better inform decision-making by updating the Initiative's logic model, and identifying, tracking and analyzing relevant indicators that focus on monitoring outcomes.

The logic model for the FASD Initiative could benefit from outcome definition, particularly in light of the Initiative's strategic planning exercise stemming from recommendation 1. Additionally, while there was some performance measurement data available to assess activities and outputs for this evaluation, there is a gap in terms of tracking outcomes. More effort to track and analyse additional immediate and intermediate outcome indicators, once the logic model has been updated, is required. Improvements to the performance measurement approach can enhance the ability to assess Initiative success on a continuous basis. This approach can be stand alone, or embedded within a broader Centre for Health Promotion performance measurement strategy, specifically if leveraging performance measurement activities lead to a more efficient collection technique.

Appendix 1 - Logic Model for the Public Health Agency FASD Initiative

Logic Model for the Public Health Agency FASD Initiative
Text equivalent for Logic Model for the Public Health Agency FASD InitiativeLogic Model for the Public Health Agency FASD Initiative

Long Description – FASD Initiative Logic Model

Activities: Stakeholder engagement, coordination, and administration of actions on FASD

All activities lead to two outputs:

  • Constructive engagement and leadership: collaborative relationships, networks, coalitions, committees, intersectoral collaboration, joint projects and partnerships; and Knowledge development and exchange: evidence-based products, knowledge exchange events, training, practical tools for target audiences, and policies/practice guidelines.

These outputs reach target stakeholders which include other federal departments, provinces and territories, NGOs, professional associations, Canadian research and academic communities, etc.

The logic model identifies the Initiative's immediate and intermediate outcomes as follows: target stakeholders are engaged and respond coherently to FASD priorities; target stakeholders have access to evidence-based knowledge products and use them to prevent and address FASD; and public health capacity: target stakeholders and health practitioners have the capacity to intervene effectively at the population (systems, policies, programs and services) and the individual levels (professional practices).

The logic model identifies the Initiative's long-term outcomes as follows: increased awareness among women of child-bearing age of risks associated with alcohol use during pregnancy; decreased alcohol consumption rates in pregnant women; and strengthened systems of support, services and resources for individuals, families and communities affected by FASD.

Ultimate outcome: Reduced incidence of FASD and improved health and well-being outcomes of those who are affected by FASD

Enlarge - Logic Model for the Public Health Agency FASD Initiative

Appendix 2 - Previous Evaluations, Reviews and Audits

Since its launch in 1999, one evaluationFootnote P has been conducted on the FASD Initiative in addition to one internal audit as well as a review and a case study commissioned by the Initiative itself:

  • Summative Evaluation: FASD Initiative (2008): The 2008 evaluation showed that the FASD Initiative had been successful in meeting some of its objectives in the areas of knowledge development and dissemination, intersectoral collaboration and capacity building. The majority of funded projects were aimed at increasing awareness of FASD, including symptoms, impacts and available resources. Funded projects also worked at enhancing capacity within communities and organizations for prevention and intervention. Areas where the Initiative was not as successful and where gaps also existed were highlighted such as a lack of research on the use of alcohol during pregnancy, prevalence rates for Canada and treatment options. In addition, capacity building was identified as needing further development; however the Public Health Agency of Canada's role and the boundaries of federal responsibility were not sufficiently clear to determine how to address this issue. The key recommendations included aligning resources with priority areas at both the national and regional level, and developing and implementing a performance monitoring system.Endnote 47
  • The August 2009 Audit of Health Promotion Programs, included three substantive references to 'FASD' and 'alcohol' in the following paragraphs:
    • Paragraph 27: Regional Offices addressed FASD with their own budgets
    • Paragraph 65: FASD Initiative is using existing contribution agreements with recipients of CAPC and CPNP to deliver other programming beyond the scope of the original agreement. This is termed 'cost-sharing' and is seen as a good practice but that the Initiative should be cautious as this may circumvent ministerial authority if the additional programming is substantively different from the objectives of the original agreement. [Recommendation in 67 is to clarify where there is a need to seek additional ministerial authority for Gs & Cs projects]
    • Paragraph 169 (related to 27): Regional Offices addressed primarily three of a possible 17 areas of health promotion priorities. FASD was one of the three. [Recommendation in 176 is that the regional health promotion activities should be better prioritized and planning / performance measurement aligned with NCR programs]
  • The September 2011 Fetal Alcohol Spectrum Disorder (FASD): A Framework for Action: Evaluation of Knowledge Exchange Outcomes concluded that the 2003 Framework was still relevant, particularly for giving direction to stakeholder groups with respect to planning FASD activities. It was recommended that the Framework be updated with new medical, prevalence and economic impact information; the dissemination of the Framework takes advantage of new information-sharing technologies (including and enhanced website); and the National Advisory Committee is re-established.
  • Public Health Agency of Canada's FASD Initiative, A Case Study in the Art and Science of Influencing Health Policy and Practice (2012): In 2011-12, an analysis of the FASD Initiative was undertaken to determine whether lessons learned could be applied to Agency programs addressing other health issues. The review found that, despite a small staff complement and low level of funding compared to other Public Health Agency of Canada programs, the Initiative had been highly effective in working with a variety of partners and stakeholders to advance the response to FASD in Canada. Six critical success factors were identified: 1) leadership; 2) the ability to build strong, trusting partnerships; 3) a shared vision and clear roles; 4) the ability to make strategic investments; 5) responsiveness and adaptability; and 6) the right people with the right skills and approaches. Recommended strategies mainly involved building on these strengths, such as: development and dissemination of knowledge and resources, particularly ongoing national surveys on alcohol use and attitudes towards alcohol use during pregnancy; engagement, coordination and collaboration with partners, stakeholders and other players in the field particularly building and maintaining linkages among federal, provincial and territorial governments as well as with broader, pan-Canadian organizations; setting clear priorities for action particularly building the economic case for FASD prevention, determining the prevalence of FASD in Canada, promoting best practices and developing interventions; maintaining a multi-sectoral approach particularly taking advantage of increased interest in the issue within the justice system; and retaining a multi-jurisdictional presence particularly by collaborating with various community organizations and the provinces and territories.Endnote 48

Appendix 3 - Evaluation Description

Evaluation Scope

The scope of the evaluation includes activities from April 2008 until March 2013. It builds on the 2008 Summative Evaluation and the recent case study report, The Public Health Agency of Canada's FASD Initiative: A Case Study in the Art and Science of Influencing Health Policy and Practice (2012).

Evaluation Issues

The evaluation focused on the five core issues outlined in the Treasury board of Canada's Policy on Evaluation (2009). These are noted in the table below.

Table 4: Core Evaluation Issues and Questions
Core Issues Evaluation Questions
Relevance
Issue #1: Continued Need for Program Assessment of the extent to which the program continues to address a demonstrable need and is responsive to the needs of Canadians.
  • What is the incidence, prevalence and impact of FASD in Canada?
  • What gaps, if any, exist in Canadian data and knowledge related to FASD?
  • What gaps, if any, exist in Canadian intervention and treatment capacity?
Issue #2: Alignment with Government Priorities Assessment of the linkages between program objectives and (i) federal government priorities and (ii) departmental priorities.
  • Does the FASD Initiative align with current federal government and PHAC priorities?
Issue #3: Alignment with Federal Roles and Responsibilities Assessment of the role and responsibilities for the federal government in delivering the program.
  • What is the FASD Initiative's role in preventing alcohol use in pregnancy, and in improving outcomes for those with FASD? Does this role align with federal roles and responsibilities and PHAC's mandate?
  • Does the FASC Initiative's role complement, overlap, duplicate, or conflict with the roles of other stakeholders?
Performance (effectiveness, economy and efficiency)
Issue #4: Achievement of Expected Outcomes (Effectiveness) Assessment of progress toward expected outcomes.
  • Is the FASD Initiative achieving its expected outcomes?
Immediate Outcome #1: Target stakeholders are engaged and respond coherently to FASD priorities (e.g. more commitment, more collaboration, more coordination)

Immediate Outcome #2: Target stakeholders have access to evidence-based knowledge products and use them to prevent and address FASD in Canada

Intermediate Outcome: Target stakeholders and health practitioners have the capacity to intervene effectively at the population level (systems, policies, programs and services) and the individual level (professional practices)
Long-term Outcome #1: Increased awareness among women of child-bearing age of risks associated with alcohol use during pregnancy

Long-term Outcome #2: Decreased alcohol consumption rates in pregnant women

Long-term Outcome #3: Strengthened systems of support, services and resources for individuals, families and communities affected by FASD

Are there unexpected or unintended impacts from delivering the activities of the FASD Initiative (positive or negative)?
Were the recommendations/issues raised in the 2008 program evaluation addressed?
Issue #5: Demonstration of Economy and Efficiency Assessment of resource utilization in relation to the production of outputs and progress toward expected outcomes.
  • Are activities undertaken in the most efficient manner, i.e. outputs are produced at a minimum cost?
  • To what extent have resources been leveraged to support the achievement of expected outcomes for FASD in Canada?
  • Are there alternative, more efficient ways of producing intended outcomes?

Have known critical factors for social change been employed to maximize outcomes from existing resources? If so, how? If not, what are the gaps?

Data Collection and Analysis Methods

Data for the evaluation were collected using multiple lines of evidence to increase the reliability and credibility of the evaluation findings. The lines of evidence included a literature review, a document review, 19 interviews with 21 key informants, performance measurement data, and financial analysis.

Literature Review

The literature review examined academic and grey literature from reliable sources that focused on documenting the need for the Initiative, key drivers/determinants, and possible alternative approaches. Literature review was also used to compare Canada's progress on expected long term outcomes with the situation in other jurisdictions. Also, a comparative analysis was conducted to understand the prevalence, incidence and societal cost of FASD in other jurisdictions, in Canada and internationally. Inclusion and exclusion criteria was developed to ensure the most appropriate, credible, reliable and relevant information needed to address specific evaluation questions is selected and reviewed. The literature review built on previous reviews of core FASD topics but focused on sources published after March 2008.

Document and data review

The document review provided the data required for a variety of relevance and performance indicators contained in the Evaluation Question and Data Collection Matrix. Documentation included:

  • Government internal funding and reporting documents, Government of Canada budgets, and central agencies websites provided background and information on Initiative relevance, including alignment with federal roles and responsibilities;
  • Public Health Agency of Canada corporate reporting and strategic policy documents;
  • Documents produced by the Initiative such as studies, progress reports work plans and financial information to provide information pertaining to the continued need for the Initiative, as well as outcome achievement, efficiency and economy; and
  • Other documents including a previous evaluation, a case study, and an internal audit related to the Initiative.

A web search identified other federal, provincial and territorial programs whose mandate is similar to that of the Initiative. This analysis provided information on: the extent to which Initiative activities complement, overlap or duplicate other programs; the comparative economy and efficiency of the Initiative; and, success factors important to various models of delivery.

Key Informant Interviews

Key informant interviews were conducted in-person and by telephone to gather in-depth information, including individual perspectives, explanations, examples and factual information to address many of the evaluation questions related to relevance, performance and economy and efficiency. A total of 19 interviews were conducted with 21 key informants from the following groups of key informants:

  • Public Health Agency of Canada representatives (National Capital Region (n= 4) and Regions (n= 3)
  • Other federal departments and agencies (n= 3)
  • External funding recipients (n= 3)
  • Provincial/territorial networks and programs (n= 3)
  • Non-governmental organizations not currently funded (n= 3)
  • Impartial international and national FASD experts (n= 2).

Performance Measurement Data 

The FASD Initiative undertook four performance measurement projects: a) an inventory of groups engaged by the Initiative, b) stakeholder satisfactory and usage surveys of two knowledge products, c) an analysis of data from a project reporting tool, and d) an analysis of outcomes from NSPF projects. Details are provided in Table 5.

Additional performance measurement data will be sought from corporate reporting systems, as well as reports from funded projects.

Table 5: Performance Measurement Projects Undertaken by the FASD Initiative
Project Name Objectives
Mapping Public Health Agency of Canada Engagement in FASD Groups Developed performance measurement information on Initiative engagement with FASD groups and the resulting public health capacity impacts, for 2008-08 to 2012-13: 
  • profiling federal, provincial/territorial and local FASD networks/committees across Canada, including an updated list of their members;
  • assessing the Agency's role and contribution to the achievements of FASD groups in building public health capacity to prevent and address FASD; and
  • identifying key gaps and opportunities for future work in increasing public health capacity through FASD networks/committees.
Stakeholder Satisfaction & Usage Surveys Conducted two surveys, one for each of the two knowledge products chosen for study:
  • FASD Prevention: Canadian Perspectives (2008) to assess whether:
    • this publication reached its intended audience;
    • FASD stakeholders found this publication relevant and useful; and
    • FASD stakeholders perceive this publication as having had a positive influence on services, programs and policy in the area of FASD prevention and women's health.
  • Webinars on the National Screening Toolkit (2010) to assess reach, awareness of webinar resource availability, uptake, satisfaction, and lessons learned on achieving webinar knowledge dissemination objectives.
Analysis of Individual Project Reporting Tool (IPRT) Data
  • The IPRT records project information on:
    • project objectives, activities, target group;
    • project funding (including leveraged resources); and
    • project outcomes.
  • This report provides an analysis of IPRT data collected between 2009-10 and 2010-11 - specifically as it relates to the NCR's FASD Initiative funds.
Analysis of Outcomes of Key National Strategic Projects Fund Projects
  • Aggregated and assessed reported outcomes of 11 NSPF projects.
  • Identified which projects/deliverables are cited in other sources (i.e. journals).
  • Identified how projects meet FASD immediate and intermediate expected outcomes. Produced a short summary table with narrative.

Financial Analysis

To support the assessment of economy and efficiency, it is expected that the evaluation will conduct a financial analysis to identify variances between planned and actual expenditures, the reasons for the variance and financial trends and their implications. The evaluation will also estimate the degree of leveraging of resources achieved by the FASD Initiative.

Data Analysis

Data are expected to be analyzed by triangulating information gathered from different sources and methods listed above. It is expected that the data collected will be analyzed using one or more of the following methods:

  • systematic compilation, review and summarization of data to illustrate key findings;
  • thematic analysis of qualitative data; and
  • comparative analysis of data from disparate sources to validate findings.

In addition, summary analyses of the data collected will be recorded by evaluation question, using an Evaluation Directorate template and referencing the sources and/or methods used to collect the data.

Appendix 4 - International Comparisons

In terms of other jurisdictions, based on available information it appears that both the United States and Australia have federal approaches to FASD that are similar to Canada. Both of these countries appear to have a federal approach that includes a range of activities related to FASD including awareness and prevention, national coordination, and information sharing. Additionally, in the United States the federal government plays a role in supporting states and territories.

In the United States, the Substance Abuse and Mental Health Services Administration (SAMHSA), which is an agency within the United States Department of Health and Human Services, has a Fetal Alcohol Spectrum Disorders (FASD) Center for Excellence. This Center is a federal initiative devoted to preventing and treating FASD.Endnote 49 The FASD Center uses a systems approach to reducing the incidence of FASD and serving individuals and families affected by these disorders. Based on most recently available information, it appears that the center receives $9.8 million and uses subcontracts for some of its work.Endnote 50 The FASD Center provides national leadership and facilitates collaboration. The approach of the FASD Center includes a suite of activities:

  • Promote FASD awareness, education, prevention, and treatment.
  • Help States develop and implement plans to address FASD.
  • Support implementation of evidence-based practices.
  • Facilitate information-sharing among states and territories.

The FASD Center works with partners including: Centers for Disease Control and Prevention (health protection agency), National Institutes of Health (medical research agency that allocates $30 million, toward its portfolio of FASD-related grantsEndnote 51), Department of Justice and Indian Health Service.

The FASD Centre has a comprehensive web page that includes resources targeted at a range of stakeholders (from community members to service providers). In addition, it includes a nation-wide map with information on progress made and lessons learned for all states and territories. The web page also provides links to relevant federal agencies, national organizations, state organizations, international organizations, treatment and referral resources, family and support groups and research organizations. Interestingly, although there are several links to Canadian sites, the Public Health Agency of Canada is not one of them.

The Australian government recently released a Commonwealth Action Plan: Responding to the Impact of Fetal Alcohol Spectrum Disorders in Australia. The Action Plan is led by the Minister of Health along with the Minister for Families, Community Services and Indigenous Affairs, and allocates $20.2 million over 2013-14 to 2016-17 on top of an existing $18.5 million.Endnote 52 The five key priorities include:

  • Enhancing efforts to prevent FASD in the community - $5.0 million
  • Secondary prevention targeting women with alcohol dependency - $4.8 million
  • Better diagnosis and management of FASD - $0.5 million
  • Targeted measures to prevent and manage FASD within Indigenous communities and families in areas of social disadvantage - $5.9 million
  • National coordination, research and workforce support - $4.0 million.

Unlike Canada, the United States and Australia, the United Kingdom (UK) does not appear to have as specific a focus on FASD. Instead, the government of the UK has a government-wide Alcohol Strategy, launched in 2012. This strategy, as one interviewee indicated, takes more of a policy approach to alcohol and related issues. It includes a paragraph on FASD, which commits to continuing to raise awareness of the need for women who are pregnant or trying to conceive to avoid alcohol, by increasing the awareness of health professionals. The document also mentions work with industry to provide a pledge for product labelling on unit content, NHS guidelines and drinking when pregnant to cover 80 per cent of products. Additionally, one alcohol industry group has also pledged to support training provided by the National Organization for Fetal Alcohol Syndrome for 10,000 midwives to advise a million women.

List of Acronyms

CAPC
Community Action Program for Children
CPNP
Canada Prenatal Nutrition Program
FASD
Fetal Alcohol Spectrum Disorder
G&C
Grants and Contributions
IPRT
Individual Project Reporting Tool
NSPF
National Strategic Projects Fund
NGO
Non-Governmental Organizations
O&M
Operations and Maintenance
PAA
Program Alignment Architecture
UK
United Kingdom

Report a problem or mistake on this page
Please select all that apply:

Privacy statement

Thank you for your help!

You will not receive a reply. For enquiries, contact us.

Date modified: