Table 1. Research on Prevention and Intervention Reference Title Sample size (N) Methods and Methodologies Aboriginal Participation/Representation Baydala et al., 2008 A culturally adapted drug and alcohol abuse prevention program for Aboriginal children and youth. For questionnaire: N= 17 Aboriginal children For workshop: N= 43 total (30 community members, 9 Elders, 4 researchers) Community-based participatory research, questionnaire, focus groups. All participants were recruited from the Alexis Nakota Sioux Nation. For focus groups: N= 14 total (8 school personnel, 6 Elders) Fuchs et al., 2010 Children with FASD- related disabilities receiving services from child welfare agencies in Manitoba. N= 1869 child data records Data analysis of child welfare records, literature review. 81% of children with FASD in care in Manitoba were reported as First Nations (Treaty Indian), 9% were Métis, and 4% were identified as non-status Aboriginal. The remainder were identified as non- Aboriginal (5%) or not known (1%). George et al., 2007 Bridging the research gap: Aboriginal and academic collaboration in FASD prevention: The Healthy Communities, Mothers and Children Project (HCMC). N= 4 communities Participatory action research. Academic researchers worked with members from four geographically distinct Aboriginal communities. The names of the communities were not reported. Leenaars et al., 2011 The impact of fetal alcohol spectrum disorders on families: evaluation of a family intervention program. N= 186 families (raising at least one child with FASD) Surveys and rating scales. 18% of families were reported as First Nations. Massoti et al., 2003 Urban FASD interventions: bridging the gap between Aboriginal women and primary care physicians. N/A Literature review. N/A Massoti et al., 2006 Preventing fetal alcohol spectrum disorder in Aboriginal communities: a methods development project. N= 4 communities Participatory action research. Four communities, broadly identified as Aboriginal, in Ontario and British Columbia participated.
Table 1. Research on Prevention and Intervention (continued) Reference Title Sample size (N) Methodologies Aboriginal Participation/Representation Niccols et al., 2009 Treatment issues for Aboriginal mothers with substance use problems and their children. N/A Literature review. N/A Rutman & Van Bibber, 2010 Parenting with fetal alcohol spectrum disorder. N= 59 total participants Adults with FASD (n= 15) Support people (n=8) Service providers (n= 36) Semi-structured face-to-face interviews. 66% of adults with FASD were reported as Aboriginal. No Indigenous participants were reported amongst support people or service providers interviewed. Salmon, 2003 It takes a community : constructing Aboriginal mothers and children with FAS/FAE as objects of moral panic in/through a FAS/FAE prevention policy. N/A Literature review and content analysis of the First Nations and Inuit FAS/ FAE Initiative report: It Takes a Community N/A Salmon, 2007a Dis/abling states, dis/abling citizenship: young Aboriginal mothers and the medicalization of fetal alcohol syndrome. N= 6 urban Aboriginal mothers affected by substance use and FAS/FAE Semi-structured group interviews. All women who participated in this research were self-identified Aboriginal mothers. Five of the six participants held "Registered Indian" status. Salmon, 2007b Adaptation and decolonization: the role of culturally appropriate health education in the prevention of fetal alcohol syndrome. N= 6 urban Aboriginal mothers affected by substance use and FAS/FAE Content analysis, Semi-structured group interviews. All women who participated in this research were self-identified Aboriginal mothers. Five of the six participants held "Registered Indian" status. Salmon, 2011 Tough et al., 2007 Aboriginal mothering, FASD prevention and the contestations of neoliberal citizenship. Fetal alcohol spectrum disorder prevention approaches among Canadian physicians by proportion of Native / Aboriginal patients: practices during the preconception and prenatal periods. N/A Literature review. N/A N= 4313 physicians Questionnaire. None.
Table 2. Clinical Research Reference Title Sample size (N) Ages Aboriginal Participation/Representation Carr et al., 2010 Sensory processing and adaptive behavior deficits of children across the fetal alcohol spectrum disorder continuum. N= 46 total pfas (n=15) ARND (n=16) 3-14 yrs 89 % of participants were identified as Aboriginal. PEA (n=16) Engle & Kerns, 2011 Reinforcement learning in children with fetal alcohol spectrum disorder. N= 36 total FASD (n=18) 11-17 yrs 50% of children with FASD were reported as Aboriginal. No Indigenous children were reported to be in the control group. Control (n=18) Lebel et al., 2008 Brain diffusion abnormalities in children with fetal alcohol spectrum disorder. N= 119 total FASD (n= 24) 5-13 yrs 30% of children in the FASD group were reported as Aboriginal. No Aboriginal children were reported to be in the control group. Control (n=95) Loomes et al., 2008 The effect of rehearsal training on working memory span of children with fetal alcohol spectrum disorder. N= 33 total FASD (n=33) 4-11 yrs 60% of children in the FASD group were reported as Aboriginal. Nardelli et al., 2011 Extensive deep gray matter volume reductions in children and adolescents with fetal alcohol spectrum disorders. N= 84 total FASD (n=28) 6-17 yrs 30% of children in the FASD group were reported as Aboriginal. No Aboriginal children were reported to be in the control group. Control (n=56) Rasmussen & Bisanz, 2009 Executive functioning in children with fetal alcohol spectrum disorders: profiles and age-related differences. N= 29 total FASD (n=29) 8-16 yrs 65% of children in the FASD group were identified as First Nations. The author s report that participants were recruited from First Nations communities but do not specify how.
Table 2. Clinical Research (continued) Reference Title Sample size (N) Ages Aboriginal Participation/Representation Rasmussen & Bisanz, 2010 The relation between mathematics and working memory in young children with fetal alcohol spectrum disorders. N= 41 total FASD (n=21) 4-6 yrs 76% of children in the FASD group were reported as Aboriginal. One child was identified as Aboriginal in the control group. Control (n=20) The author s report that participants were recruited from First Nations communities but do not specify how. Rasmussen et al., 2006 Neurobehavioral functioning in children with fetal alcohol spectrum disorder. N= 50 total FASD (n=50) 6-15 yrs 70% of children in the FASD group were identified as Aboriginal. Zhou et al., 2011 Developmental cortical thinning in fetal alcohol spectrum disorders. N= 38 total FASD (n=38) 6-30 yrs 30% of child participants were reported as Aboriginal.
Table 3. Epidemiological Research Reference Title Sample size (N), # Cases (%), Prevalence 2 / Incidence 3 Methodology Location Asante & Nelms-Matzke, 1985 Survey of children with chronic handicaps and fetal alcohol syndrome in the Yukon and British Columbia. N= 391 Native children (sic) Number of children with FAS: n=166 (42.5%) Questionnaire, clinical screening. 36 communities in Yukon and northwest British Columbia. Prevalence: 46/1000 for Yukon Natives (sic) 25/1000 for NW BC Natives (sic) Incidence not available. Bray & Anderson, 1989 Appraisal of the epidemiology of fetal alcohol syndrome among Canadian native peoples. N= 3 papers Literature review. N/A Burd & Moffat, 1994 Epidemiology of fetal alcohol syndrome in American Indians, Alaskan Natives, and Canadian Aboriginal Peoples: a review of the literature. N= 10 papers Prevalence: 2.8-6.6/1000 Incidence not available Literature review. Reviewed 3 studies from the province of British Columbia (Asante & Nelms- Matzke, 1985; Robinson et al, 1987; Wong, unpublished study), and 7 studies from the United States. Godel et al., 1992 Smoking and caffeine and alcohol intake during pregnancy in a northern population: effect on fetal growth. N= 162 women Number of women drinking during pregnancy: Inuit: n=56 (35%) Indian: n=38 (24%) White: n=37 (23%) Mixed race: n=31 (19%) Prevalence not available. Questionnaire. 10 communities in the western region of the Northwest Territories including Inuvik. The authors report that ethnicity was determined through self-identification and the use of a medical number that identified registered natives. The terms Indian and Mixed Race were not defined. Incidence not available.
Table 3. Epidemiological Research (continued) Reference Kowlessar, 1997 Muckle et al., 2011 Robinson et al., 1987 Title An examination of the effects of prenatal alcohol exposure on school-age children in a Manitoba First Nation s community: a study of fetal alcohol syndrome prevalence and dysmorphology. Alcohol, smoking, and drug use among Inuit women of childbearing age during pregnancy and the risk to children. Clinical profile and prevalence of fetal alcohol syndrome in an isolated community in British Columbia. Sample size (N), # Cases (%), Prevalence 2 / Incidence 3 N= 178 children Number of children with FAS or pfas: n=18 (10%) Prevalence: 51-101/1000 N= 208 women Number of women drinking during pregnancy: n=130 (61%) Prevalence not available. Incidence not available. N= 45 mothers; 116 children Number of women drinking during pregnancy: n=54 (47%) Number of children with FAE: n=0 FASD: n=22 (19%). Methodology Interviews, clinical screening. Structured interviews. Interview with the mothers, clinical screening. For FAS. Location First Nation community in Manitoba. Note: Community engagement reported; two local Aboriginal workers were hired and trained to coordinate the work in accordance with the band council s directives. Nunavik. First Nation community in Canim Lake, British Columbia. Prevalence: 190/1000. Incidence not available. Williams, et al., 1999 Incidence of fetal alcohol syndrome in Northeastern Manitoba. N= 745 children Number of children with FAS: n=5 (1%) Clinical screening for FAS. 22 communities (cities, towns, and reserves) from the 54 th to 60 th parallel in Northern Manitoba. Prevalence not available. Incidence: 7.2/1000 2. Prevalence data measures the total number of cases of disease in a population. 3. Incidence data measures the rate of occurrence of new cases.
Table 4. Summary of Agency Health Reports Authors/Title (in order of publication date) Objective(s) Organization(s)/Funding FAS/FAE Technical Working Group, 1997. It takes a community: framework for the First Nations and Inuit fetal alcohol syndrome and fetal alcohol effects initiative - A resource manual for community-based prevention of fetal alcohol syndrome and fetal alcohol effects. Develop, implement and evaluate a framework for a First Nations and Inuit FAS/FAE initiative. FAS/FAE Technical Working Group represents the Assembly of First Nations, the Inuit Tapirisat of Canada, and the First Nations and Inuit Health Branch of Health Canada. Funded by Health Canada Tait, 2000. Aboriginal Identity and the Construction of Fetal Alcohol Syndrome. Review the production of knowledge about FAS and the implications to Aboriginal people in Canada. Proceedings of the Advanced Study Institute on Mental Health of Indigenous Peoples. Van Bibber, 1997. It takes a community: a resource manual for community-based prevention of fetal alcohol syndrome and fetal alcohol effects. Review community-based approaches to FAS/E prevention and intervention. Provide strategies to help First Nation and Inuit communities design, develop, and deliver their own community-based prevention and intervention strategies. Aboriginal Nurses Association of Canada. Funded by Health Canada. Leslie & Roberts, 2001. Enhancing fetal alcohol syndrome (FAS)-related interventions at the prenatal and early childhood stages in Canada. Identify gaps in community-based programs for FAS. Review best practices for FAS intervention. Provide recommendations to facilitate training and program development across Health Canada projects. Develop a national advisory committee. Create a database of FAS-related resources, knowledge and training. Canadian Centre on Substance Abuse, Health Canada's Community Action Program for Children. Funded by Health Canada, the Solicitor General and through its own revenue-generating efforts. Tait, 2003. Fetal alcohol syndrome among aboriginal people in Canada: review and analysis of the intergenerational links to residential schools. Identify barriers and gaps in services that prevent the implementation of best practices for FAS/ARBE prevention, identification and intervention proposed by Health Canada. Funded by The Aboriginal Healing Foundation. Fuchs et al., 2005. Children with disabilities receiving services from child welfare agencies in Manitoba. Create and deliver profile information of children with disabilities receiving services from child and family services agencies in Manitoba for all levels of the service delivery system to meet the needs of children with disabilities. Funded by Health Canada with the support of the Centre of Excellence for Child Welfare.
Table 4. Summary of Agency Health Reports (continued) Authors/Title (in order of publication date) Objective(s) Organization(s)/Funding Buell et al., 2006. Fetal alcohol spectrum disorder: environmental scan of services and gaps in Inuit communities. Clinesmith, 2007. Healthy choices in pregnancy for Aboriginal Peoples in British Columbia: An analysis and recommendations. Pak tnkek First Nation Health, 2008. Developing Sustainable Early Intervention Services in CMM Communities in Nova Scotia. UNICEF Canada, 2009. Canadian supplement to The state of the world s children, Aboriginal children s health: leaving no child behind. Salmon & Clarren, 2011. Developing effective, culturally appropriate avenues to FASD diagnosis and prevention in northern Canada. Conduct an environmental scan of services available in Inuit communities to identify gaps and Inuit-specific concerns. Conduct a literature review of mainstream and Inuit-specific resources on FASD to identify best practices for prevention and intervention. Review intervention programs for women currently available in British Columbia. Provide best practices for developing an Aboriginal-specific Healthy Choices in Pregnancy program. Report on the outcomes of a pilot project to bring early intervention services to children with disabilities and their families in Paq tnkek First Nation. Provide recommendations to assist other First Nation communities who seek to acquire services across jurisdictional boundaries. Report on the health status of First Nations, Inuit and Métis children. Identify jurisdictional hurdles in accessing health care services by children in these communities. Provide recommendations for addressing the health inequalities of Aboriginal children in Canada. Describe two research initiatives undertaken by members of the Canada Northwest FASD Research Network to improve the diagnosis and prevention of FASD in northern Canadian communities. Provide recommendations on ways to support multi-directional capacity building in FASD diagnosis and prevention. Ajunnginiq Centre at the National Aboriginal Health Organization and the Inuit Tapiriit Kanatami. Funded by Health Canada and the National Aboriginal Health Organization. Aboriginal Act Now BC Initiative. Funded by the BC provincial government. Paq tnkek First Nation and The Confederacy of Mainland Mi kmaq (CMM). Funded by First Nations and Inuit Health. UNICEF Canada, The National Collaborating Centre for Aboriginal Health, University of Northern British Columbia. Funded by private donations to UNICEF. Canada Northwest FASD Research Network.