FREQUENT BEHAVIOURAL CHALLENGES IN CHILDREN WITH FETAL ALCOHOL SPECTRUM DISORDER: A NEEDS-BASED ASSESSMENT REPORTED BY CAREGIVERS AND CLINICIANS

Main Article Content

Courtney R. Green
Jessica Roane
Amy Hewitt
Nazeem Muhajarine
Christopher Mushquash
Andre Sourander
Patricia Lingley-Pottie
Patrick McGrath
James N. Reynolds

Keywords

Fetal Alcohol Spectrum Disorder, child behaviours, parenting strategies, support

Abstract

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.

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References

1. Chudley AE, Conry J, Cook JL, Loock C, Rosales T, LeBlanc N. Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. CMAJ 2005;172(5 Suppl): S1-S21.
2. Koren G, Nulman I, Chudley AE, Loock C. Fetal alcohol spectrum disorder. CMAJ 2003;169(11):1181-1185.
3. Pei J, Job J, Kully-Martens K, Rasmussen C. Executive function and memory in children with Fetal Alcohol Spectrum Disorder. Child Neuropsychol 2011;17(3):290-309.
4. Green CR, Mihic AM, Nikkel SM, Stade BC, Rasmussen C, Munoz DP, et al. Executive function deficits in children with fetal alcohol spectrum disorders (FASD) measured using the Cambridge Neuropsychological Tests Automated Battery (CANTAB). J Child Psychol Psychiatry 2009;50(6):688-697.
5. Rasmussen C. Executive functioning and working memory in fetal alcohol spectrum disorder. Alcohol Clin Exp Res 2005;29(8):1359-1367.
6. Streissguth AP, Aase JM, Clarren SK, Randels SP, LaDue RA, Smith DF. Fetal alcohol syndrome in adolescents and adults. JAMA 1991;265(15):1961-1967.
7. Streissguth AP, Barr HM, Bookstein FL, Sampson PD, Olson HC. The long-term neurocognitive consequences of prenatal alcohol exposure: A 14-year study. Psychological Science 1999;10:186-190.
8. Streissguth AP, Bookstein FL, Barr HM, Sampson PD, O'Malley K, Young JK. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. J Dev Behav Pediatr 2004;25(4):228-238.
9. O'Connor MJ, Paley B. Psychiatric conditions associated with prenatal alcohol exposure. Dev Disabil Res Rev 2009;15(3):225-234.
10. Peadon E, Rhys-Jones B, Bower C, Elliott EJ. Systematic review of interventions for children with Fetal Alcohol Spectrum Disorders. BMC Pediatr 2009;9:35.
11. Bertrand J. Interventions for children with fetal alcohol spectrum disorders (FASDs): overview of findings for five innovative research projects. Res Dev Disabil 2009;30(5):986-1006.
12. Premji S, Benzies K, Serrett K, Hayden KA. Research-based interventions for children and youth with a Fetal Alcohol Spectrum Disorder: revealing the gap. Child Care Health Dev 2007;33(4):389-397.
13. Green CR, Mihic AM, Brien DC, Armstrong IT, Nikkel SM, Stade BC, Rasmussen C, Munoz DP, Reynolds JN. Oculomotor deficits in children with fetal alcohol spectrum disorders assessed using a mobile laboratory. Eur J Neurosci 2009;29(6):1302-1309.
14. Reynolds JN, Weinberg J, Clarren S, Beaulieu C, Rasmussen C, Kobor M, Dube M-P, Goldowitz D. Fetal Alcohol Spectrum Disorders: Gene-environment interactions, predictive biomarkers, and the relationship between structural alterations in the brain and functional outcomes. Sem Ped Neurol 2011;18(1):49-55.
15. Salmon J, Buetow S. Transcendental phenomenology and classic grounded theory as mixed data collection methods in a study exploring fetal alcohol spectrum disorder in New Zealand. J Popul Ther Clin Pharmacol 2013;20(2):e82-90.
16. Salmon J. Fetal alcohol spectrum disorder: New Zealand birth mothers' experiences. Can J Clin Pharmacol 2008;15(2):e191-213.
17. O'Connor MJ, Frankel F, Paley B, Schonfeld AM, Carpenter E, Laugeson EA, et al. A controlled social skills training for children with fetal alcohol spectrum disorders. J Consult Clin Psychol 2006;74(4):639-648.
18. O'Connor MJ, Laugeson EA, Mogil C, Lowe E, Welch-Torres K, Keil V, et al. Translation of an evidence-based social skills intervention for children with prenatal alcohol exposure in a community mental health setting. Alcohol Clin Exp Res 2012;36(1):141-152.
19. Leenaars LS, Denys K, Henneveld D, Rasmussen C. The impact of fetal alcohol spectrum disorders on families: evaluation of a family intervention program. Community Ment Health J 2012;48(4):431-435.
20. Lingley-Pottie P, McGrath PJ. Development and initial validation of the treatment barriers index (TBI) scale: A content validity study. ANS Adv Nurs Sci 2011;34(2):151-162.
21. Lingley-Pottie P, McGrath P, Andreou P. Barriers to mental health care: perceived delivery system differences. ANS Adv Nurs Sci 2013;36(1):51-61.
22. Lingley-Pottie P, McGrath PJ. Distance therapeutic alliance: the participant's experience. ANS Adv Nurs Sci 2007;30(4):353-366.

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