Canada's Drug Strategy - Situational Analysis : Fetal Alcohol Syndrome/Fetal Alcohol Effects and the Effects of Other Substance Use During Pregnancy

2. Methodology

2.1 Key Informant Interviews

2.1.1 Selection of Key Informants

Nominations for key informants were received from 1) members of the steering committee, 2) the Federal/Provincial/Territorial Committee on Alcohol and Other Drug Issues, 3) provincial FAS coordinators (where they existed), and 4) Health Canada. As well as representing the 13 provincial/territorial jurisdictions, other considerations in the selection of key informants were:

• multidisciplinary coverage (i.e., medicine, addictions, social services, psychology);
• coverage of the life stages;
• representation of a variety of work settings (i.e., academia, government, community agencies);
• perspective of a parent of an affected child;
• representation of Aboriginal issues; and
• inclusion of individuals who could articulate the major issues facing remote and rural communities.

Twenty-eight people were selected. Two nominees declined; both recommended a more suitable colleague. In three cases, two people participated in the interview, making a total of 31 key informants. A series of 28 interviews were then carried out to collect information on FAS/FAE-related activities in each of the key informant’s jurisdictions.

2.1.2 Interviews

All participants were sent a confirmation letter as well as an interview guide that included a set of open-ended interview questions (see Appendix A) and key definitions (see Section 2.2.1). The interview guide was tested prior to initiating the interviews.

In preparing for and answering the questions, interviewees were asked to present a broad jurisdictional perspective. Informants were encouraged to contact at least two other people to complement their knowledge of FAS/FAE-related activities in their jurisdiction. Together, this canvassing resulted in input from an additional 21 people being incorporated into the data collection process.

All interviews were conducted by telephone; 24 were in English and the remaining 4 in French. To ensure appropriate representation of Aboriginal views, 6 interviews were conducted with members of the Aboriginal community. Interviews took place between August and November, 1999. Interview times ranged from 40-90 minutes.

The French interviews were translated into English for the purpose of data analysis. Information collected from the program survey and key informant interviews was analyzed for common themes and trends.

2.2 Program Survey

CCSA’s FAS/FAE database formed the basis of the sample for the program survey. The 250 agencies in CCSA’s database of treatment agencies, that indicated specialized services for women, were sent the program survey. Steering committee members and provincial FAS coordinators were invited to suggest other agencies that provide services for women, taking into account the following: 1) the organization is currently, or has within the past five years been involved in FAS/FAE activities, 2) has received outside funding to specifically address FAS/FAE-related issues, or 3) identifies FAS/FAE issues specifically in their mandate.

The total number of surveys sent out was 605 and 239 were returned, for a response rate of 39%. Seventy-five per cent indicated that the overall focus of their organization was either health or children/family services.

Figure 1: Focus of Responding Organizations (respondents checked all that applied)

2.2.1 Defining FAS/FAE-related Activities

For the purposes of this project, the following definitions were developed:

Prevention activities address issues up to the birth of the child and are intended to promote health, prevent alcohol and other drug use during pregnancy, prevent conception while substances are used, or reduce the harm arising from substance use during pregnancy.

Primary prevention activities are undertaken with a healthy population to maintain or enhance physical and/or emotional health. Such activities focus on individual behaviour change, systems or environments. Examples of primary prevention activities include raising public awareness, community education and alcohol control measures.

Secondary prevention activities aim to address a problem before it becomes severe or persistent. Examples of secondary prevention activities include outreach, screening and referral for women who are pregnant, or of child-bearing age, and using substances.

Tertiary prevention activities are for individuals in whom the condition has already developed. Activities include providing substance abuse treatment or birth control services for women who are at-risk of having a child affected by prenatal substance use, or women who have already given birth to a FAS/FAE or other substance use affected child.

Identification activities that involve screening, referral and diagnosis of newborns, children, adolescents or adults affected by prenatal substance use. Screening may occur within a variety of settings such as social and health care, legal, educational or vocational. Diagnosis is carried out by medical specialists in conjunction with multidisciplinary teams. Assessment may occur prior to or following diagnosis, and in either case, elaborates on the person’s abilities and attributes beyond that provided by a diagnosis.

Intervention activities are intended to prevent or reduce the harm associated with primary and secondary disabilities. These activities are directed to individuals with FAS/FAE or other drug effects, including infants, children, adolescents and adults. Examples of such activities include strategies for improving management of the child, parenting, family support, or special interventions with respect to schools, vocational training, young offenders, or criminal justice settings.

2.2.2 Limitations

When considering the findings of this analysis, the following limitations should be noted:

• Considering the national scope of this project and the breadth and complexity of the issues, the sample size of the key informant interviews was small.
• The scope of reported activities is limited to the information provided by key informants and mailed survey respondents. Some important activities may have been missed.
• The mail survey sample was broad and included many general social, health and education organizations; the response rate of 39%.
• Not every informant consulted with others prior to their interview, which was encouraged.
• Different interviewers were used for English-speaking, French-speaking and Aboriginal key informants. In some cases, this may have influenced the information obtained from the interviews.
• The use of substances by pregnant women and women of child-bearing age is interwoven with many other health, social, cultural and economic issues. It was beyond the scope of this project to investigate these broader issues.