OBJECTIVE: Despite substantial research characterizing the brain injury, a significant gap still exists in providing timely and effective care for children with Fetal Alcohol Spectrum Disorder (FASD). The objective of this study was to conduct a needs assessment that could help inform intervention programs and appropriate strategies to manage challenging behaviours targeted to families impacted by FASD. METHODS: Sixty caregivers and 26 clinicians from across Canada completed a semi-structured telephone interview. RESULTS: Caregivers reported that the most challenging behaviour categories were "Externalizing Behaviours", "Cognitive Difficulties", and "Social Difficulties/Maladjustment", whereas the most successful parenting strategies were "Parental Reflection", "Routine/Structure/Consistency", and "Environmental Modification". Clinicians reported that "Insufficient Support/Knowledge from Health and Social Professionals and Agencies" and "Behavioural Difficulties/Challenges" were the most common concerns from caregivers of children with FASD. CONCLUSIONS: The number and extent of challenges reported make it evident that there are many unmet needs that compromise the quality of life for these caregivers, their children, and their families. These data will be used to inform the development of an intervention program that will provide a family-centered approach to training, education, and support for children with FASD and their families.
OBJECTIVE: Despite substantial research characterizing the brain injury, a significant gap still exists in providing timely and effective care for children with Fetal Alcohol Spectrum Disorder (FASD). The objective of this study was to conduct a needs assessment that could help inform intervention programs and appropriate strategies to manage challenging behaviours targeted to families impacted by FASD. METHODS: Sixty caregivers and 26 clinicians from across Canada completed a semi-structured telephone interview. RESULTS: Caregivers reported that the most challenging behaviour categories were "Externalizing Behaviours", "Cognitive Difficulties", and "Social Difficulties/Maladjustment", whereas the most successful parenting strategies were "Parental Reflection", "Routine/Structure/Consistency", and "Environmental Modification". Clinicians reported that "Insufficient Support/Knowledge from Health and Social Professionals and Agencies" and "Behavioural Difficulties/Challenges" were the most common concerns from caregivers of children with FASD. CONCLUSIONS: The number and extent of challenges reported make it evident that there are many unmet needs that compromise the quality of life for these caregivers, their children, and their families. These data will be used to inform the development of an intervention program that will provide a family-centered approach to training, education, and support for children with FASD and their families.
Authors: Karen Turner; James N Reynolds; Patrick McGrath; Patricia Lingley-Pottie; Anna Huguet; Amy Hewitt; Courtney Green; Lori Wozney; Christopher Mushquash; Nazeem Muhajarine; Andre Sourander; Heather Caughey; Jessica Roane Journal: JMIR Res Protoc Date: 2015-10-13