Main Article Content
Background and objective
Individuals with Fetal Alcohol Spectrum Disorder (FASD) may experience a range of behavioral, cognitive, and physiological difficulties that can result from prenatal alcohol exposure. Intervention approaches for individuals with FASD are required to respond to evolving strengths and needs throughout their lifespan.
Material and methods
In response to these evolving unique needs, best practices were developed by integrating current research findings with the experiences of individuals with FASD and their caregivers. The “Towards Healthy Outcomes” approach has been developed to provide an evidence-informed framework to support intervention for individuals with FASD throughout their lifespan.
This framework was developed based on core philosophies that create opportunities for individualized intervention support, including development throughout the lifespan, impact of interacting systems, and a strengths-based approach. These underlying philosophies and core beliefs are actioned throughout the lifespan around the following 12 domains: (1) physical health; (2) attachment; (3) family cohesion; (4) social functioning; (5) mental health and regulation; (6) education; (7) identity development; (8) community engagement; (9) adaptive skills; (10) housing; (11) employment; and (12) parenting skills. To establish its potential use, each of these domains is considered broadly within the context of FASD field, including the new ideas put forward by the studies included in this issue.
The “Towards Healthy Outcomes” framework is an intervention approach that facilitates proactive and evidence-informed approaches to foster the development of individuals with FASD. It provides developmental considerations that are specific to the 12 domains and reflect the whole person. Furthermore, the “Towards Healthy Outcomes” framework allows for the integration of research with the lived experiences of caregivers and individuals with FASD that bridges existing research gaps.
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2. Jones KL, Smith DW. Recognition of the fetal alcohol syndrome in early infancy. Lancet. 1973;302(7836):999–1001. https://doi.org/10.1016/S0140-6736(73)91092-1
3. Hanson JW, Jones KL, Smith DW. Fetal alcohol syndrome. Experience with 41 patients. JAMA. 1976;235(14):1458–60. https://doi.org/10.1001/jama.1976.03260400024021
4. Clarren SK, Smith DW. The fetal alcohol syndrome. New Eng J Med. 1978;298(19):1063–7. https://doi.org/10.1056/nejm197805112981906
5. Cook JL, Green CR, Lilley CM, Anderson SM, Baldwin ME, Chudley AE, et al. Fetal alcohol spectrum disorder: A guideline for diagnosis across the lifespan. Can Med Ass J. 2016;188(3):191. https://doi.org/10.1503/cmaj.141593
6. Hanlon-Dearman A, Green CR, Andrew G, LeBlanc N, Cook JL. Anticipatory guidance for children and adolescents with Fetal Alcohol Spectrum Disorder (FASD): Practice points for primary health care providers. J Popul Ther Clin Pharmacol. 2015;22(1):e27–56. Available from: https://jptcp.com/index.php/jptcp/article/view/275
7. Reid N, Dawe S, Shelton D, Harnett P, Warner J, Armstrong E, et al. Systematic review of fetal alcohol spectrum disorder interventions across the life span. Alcohol Clin Exp Res. 2015;39(12):2283–95. https://doi.org/10.1111/acer.12903
8. Flannigan K, Wrath A, Ritter C, McLachlan K, Harding KD, Campbell A, et al. Balancing the story of fetal alcohol spectrum disorder: A narrative review of the literature on strengths. Alcohol Clin Exp Res. 2021;45(12);2448-2464. https://doi.org/10.1111/acer.14733
9. Pei J, Kapasi A, Kennedy KE, Joly V. Towards healthy outcomes for individuals with fetal alcohol spectrum disorder. Canada FASD Research Network in collaboration with the University of Alberta; 2019. Available from: https://canfasd.ca/wp-content/uploads/publications/Final-Towards-Healthy-Outcomes-Document-with-links.pdf
10. Kapasi A, Brown J. Strengths of caregivers raising a child with foetal alcohol spectrum disorder. Child Family Soc Work. 2017;22(2):721–30. https://doi.org/10.1111/cfs.12288
11. Cleversey K, Brown J, Kapasi A. Educational services for youth with fetal alcohol spectrum disorder: Caregivers’ perspectives. Int J Ment Health Addict. 2018;16(5):1156–73. https://doi.org/10.1007/s11469-017-9838-8
12. Unsworth K, McFarlane A. The Canada Fetal Alcohol Spectrum Disorder Research Network: Understanding and benefiting from collaboration, experience, and expertise. Canada FASD Research Network; 2020. Available from: https://canfasd.ca/wp-content/uploads/publications/CanFASD-Understanding-and-Benefiting-from-Collaboration-Experience-and-Expertise.pdf
13. Reid D, Beland W, Richardson L, Flannigan K. What if? Incorporating the voices of those with lived expe-rience to change the focus of fetal alcohol spectrum disorder research. J Fetal Alcohol Spect Disord. 2022; 4(SP1): e162-e170. https://doi.org/10.22374/jfasd.v4iSP1.16
14. Reid D, Brownstone L, Schofield N, Pitawanakwat R, Stewart M. Nothing about us without us: Essential considerations for collaborative FASD research. J Fetal Alcohol Spect Disord. 2022; 4(SP1): e20-e35. https://doi.org/10.22374/jfasd.v4iSP1.14
15. Brenna B, Burles M, Holtslander L, Bocking S. A school curriculum for Fetal Alcohol Spectrum Disorder: Advice from a young adult with FASD. Int J Incl Educ. 2017;21(2):218–29. https://doi.org/10.1080/13603116.2016.1193565
16. Mela M, Hanlon-Dearman A, Ahmed AG, Rich SD, Densmore R, Reid D, et al. Treatment algorithm for the use of psychopharmacological agents in individuals prenatally exposed to alcohol and/or with diagnosis of fetal alcohol spectrum disorder (FASD). J Popul Ther Clin Pharmacol. 2020;27(3):e1–e13. https://jptcp.com/index.php/jptcp/article/view/681
17. Popova S, Lange S, Chudley AE, Reynolds JN, Rehm J, May PA, et al. World Health Organization international study on the prevalence of fetal alcohol spectrum disorder (FASD): Canadian component. A report prepared for the Institute of Mental Health Policy Research, Centre for Addiction and Mental Health 2018. Available from: https://canfasd.ca/wp-content/uploads/2018/05/2018-Popova-WHO-FASD-Prevalance-Report.pdf
18. Popova S, Lange S, Shield K, Mihic A, Chudley AE, Mukherjee RAS, et al. Comorbidity of fetal alcohol spectrum disorder: A systematic review and meta-analysis. The Lancet. 2016;387(10022):978–87. https://doi.org/10.1016/S0140-6736(15)01345-8
19. Harding KD, Wrath AJ, Flannigan K, Unsworth K, McFarlane A, Pei J. Fetal alcohol spectrum disorder: The importance of adopting a standard definition in Canada. J Fetal Alcohol Spect Disord. 2022; 4(SP1): e5-e19. https://doi.org/10.22374/ jfasrp.v4i1.10
20. McLachlan K, Dunleavy B, Grubb M. Toward effec-tive identification of FASD: A topical review of con-siderations for enhancing evidence-based screening with an implementation science framework. J Fetal Alcohol Spect Disord. 2022; 4(SP1): e60-e69. https://doi.org/10.22374/jfasd.v4iSP1.15
21. Wrath AJ, Mela M, Le T, Durr M, DesRoches A, Nomani S, et al. Psychotropic medication usage in individuals with fetal alcohol spectrum disorders (FASD) and psychiatric co-morbidities in Canada. J Fetal Alcohol Spect Disord. 2022; 4(SP1): e70-e90. https://doi.org/10.22374/jfasd.v4iSP1.21
22. Badry D, Marcellus L, Choate P. An intersectional-ity-based policy analysis of Canadian child advocate reviews of infants, children, and youth with fetal alco-hol spectrum disorder in child welfare care. J Fetal Alcohol Spect Disord. 2022; 4(SP1): e91-e115. https://doi.org/10.22374/jfasd.v4iSP1.11
23. Kennedy KE, Pei J, Andrew G, Rasmussen C. Longitudinal evaluation of mathematics achievement in children and adolescents with FASD. J Fetal Alcohol Spect Disord. 2022; 4(SP1): e116-e128. https://doi.org/10.22374/jfasd.v4iSP1.12
24. Wolfson L, Poole N, Harding KD, Stinson J. At a juncture: Exploring patterns and trends in FASD prevention research from 2015–2021 using the four-part model of prevention. J Fetal Alcohol Spect Disord. 2022; 4(SP1): e36-e59. https://doi.org/10.22374/jfasd.v4iSP1.13
25. Harding KD, Dionne A, Harding EV. “You don’t want to drink? What are you, pregnant?!”: Portrayals of alcohol and substance use during pregnancy on tele-vision. J Fetal Alcohol Spect Disord. 2022; 4(SP1): e129-e161. https://doi.org./10.22374/ jfasrp.v4iSP1.19
26. Deci EL, Ryan RM. Self-determination theory. In: Handbook of theories of social psychology, vol. 1 [Internet]. London: SAGE; 2012; pp. 416–37. Available from: https://sk.sagepub.com/reference/hdbk_socialpsychtheories1
27. Maree JG. The psychosocial development theory of Erik Erikson: Critical overview. Early Child Dev Care. 2021;191(7–8):1107–21. https://doi.org/10.1080/03004430.2020.1845163
28. Murawski NJ, Moore EM, Thomas JD, Riley EP. Advances in diagnosis and treatment of fetal alcohol spectrum disorders: From animal models to human studies. Alcohol Res. 2015;37(1):97–108.
29. Clark E, Minnes P, Lutke J, Ouellette-Kuntz H. Caregiver perceptions of the community integration of adults with foetal alcohol spectrum disorder in British Columbia. J Appl Res Intellect Disabil. 2008;21(5):446–56. https://doi.org/10.1111/j.1468-3148.2007.00414.x
30. Beresford B, Clarke S, Maddison J. Therapy interventions for children with neurodisabilities: A qualitative scoping study. Health Technol Assess. 2018;22(3):1-150. https://doi.org/10.3310/hta22030
31. Carlon S, Stephenson J, Carter M. Parent reports of treatments and interventions used with children with autism spectrum disorders (ASD): A review of the literature. Australas J Spec Edu. 2014;38(1):63–90. https://doi.org/10.1017/jse.2014.4
32. Peacock G, Rhodes C. Integrating systems of care for individuals with intellectual and developmental disabilities across the lifespan. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. Cham: Springer; 2016. p. 123–34.
33. Wacker DP, Berg WK, Harding JW, Cooper-Brown LJ. Functional and structural approaches to behavioral assessment of problem behavior. In: Fisher WW, Piazza CC, Roane HS, editors. Handbook of applied behavior analysis. New York, NY: Guilford Press; 2011. pp. 165–81.
34. Losinski M, Maag JW, Katsiyannis A, Ryan JB. The use of structural behavioral assessment to develop interventions for secondary students exhibiting challenging behaviors. Edu Treat Child. 2015;38(2):149–74. https://doi.org/10.1353/etc.2015.0006
35. DeRobertis EM, Bland AM. Lifespan human development and “the humanistic perspective”: A contribution toward inclusion. Human Psychol. 2020;48(1):3–27. https://doi.org/10.1037/hum0000141
36. Laursen EK. Strength-based practice with children in trouble. Reclaim Child Youth. 2000;9(2):70–5.
37. McCormick CM, Kuo SI-C, Masten AS. Developmental tasks across the life span. In: Fingerman KL, Berg CA, Smith J, Antonucci TC, editors. Handbook of life-span development. Dordrecht, the Netherlands: Springer; 2011. pp. 117–39.
38. Wolfson L, Schmidt RA, Stinson J, Poole N. Examining barriers to harm reduction and child welfare services for pregnant women and mothers who use substances using a stigma action framework. Health Soc Care Comm. 2021;29(3):589–601. https://doi.org/10.1111/hsc.13335
39. Roozen S, Stutterheim SE, Bos AER, Kok G, Curfs LMG. Understanding the social stigma of fetal alcohol spectrum disorders: From theory to interventions. Found Sci. 2020;27;753-771. https://doi.org/10.1007/s10699-020-09676-y
40. Harding K, Whittingham L. Framing fetal alcohol spectrum disorder policy, practice, and research using the United Nations Convention on the Rights of Persons with Disabilities. Canada FASD Research Network; 2021. Available from: https://canfasd.ca/wp-content/uploads/publications/UNCRPD-and-FASD-final.pdf
41. Kumar PA, Mohideen F. Strengths-based positive schooling interventions: A scoping review. Contemp School Psychol. 2021;25(1):86–98. https://doi.org/10.1007/s40688-019-00260-1
42. Steiner AM, Gengoux GW. Strength-based approaches to working with families of children with ASD. In: Miller S, Morgan L, editors. Handbook of parent-implemented interventions for very young children with autism. Dordrecht, the Netherlands: Springer; 2018. pp. 155–68.
43. Mela M, Okpalauwaekwe U, Anderson T, Eng J, Nomani S, Ahmed A, et al. The utility of psychotropic drugs on patients with fetal alcohol spectrum disorder (FASD): A systematic review. Psychiatry Clin Psychopharmacol. 2018;28(4):436–45. https://doi.org/10.1080/24750573.2018.1458429
44. Bernard K, Dozier M, Bick J, Lewis-Morrarty E, Lindhiem O, Carlson E. Enhancing attachment organization among maltreated children: Results of a randomized clinical trial. Child Dev. 2012;83(2):623–36. https://doi.org/10.1111/j.1467-8624.2011.01712.x
45. Cicchetti D, Rogosch FA, Toth SL. Fostering secure attachment in infants in maltreating families through preventive interventions. Dev Psychopathol. 2006;18(3):623–49. https://doi.org/10.1017/S0954579406060329
46. Jacobson JL, Jacobson SW. Effects of prenatal alcohol exposure on child development. Alcohol Res Health. 2002;26(4):282–6. https://pubs.niaaa.nih.gov/publications/arh26-4/282-286.htm
47. McKeown RE, Garrison CZ, Jackson KL, Cuffe SP, Addy CL, Waller JL. Family structure and cohesion, and depressive symptoms in adolescents. J Res Adolesc. 1997;7(3):267–81. https://doi.org/10.1207/s15327795jra0703_2
48. Olson DH, Sprenkle DH, Russell CS. Circumplex model of marital and family system: I. Cohesion and adaptability dimensions, family types, and clinical applications. Fam Process. 1979;18(1):3–28. https://doi.org/10.1111/j.1545-5300.1979.00003.x
49. Balcaen L, Santos R, Roger K, Mignone J. Families with fetal alcohol spectrum disorders: Exploring adoptive parents’ experiences of family wellbeing. Adopt Foster. 2021;45(3):283–99. https://doi.org/10.1177/03085759211050044
50. Cumsille PE, Epstein N. Family cohesion, family adaptability, social support, and adolescent depressive symptoms in outpatient clinic families. J Fam Psychol. 1994;8(2):202–14. https://doi.org/10.1037/0893-322.214.171.124
51. Marsiglia FF, Parsai M, Kulis S. Effects of familism and family cohesion on problem behaviors among adolescents in Mexican immigrant families in the southwest United States. J Ethnic Cult Divers Soc Work. 2009;18(3):203–20. https://doi.org/10.1080/15313200903070965
52. Sanders JL, Buck G. A long journey: Biological and non-biological parents’ experiences raising children with FASD. J Popul Therap Clin Pharmacol. 2010;17(2):e308–22. https://jptcp.com/index.php/jptcp/article/view/524
53. Pallathra AA, Calkins ME, Parish-Morris J, Maddox BB, Perez LS, Miller J, et al. Defining behavioral components of social functioning in adults with autism spectrum disorder as targets for treatment. Autism Res. 2018;11(3):488–502. https://doi.org/10.1002/aur.1910
54. Qualls CD, O’Brien RM, Blood GW, Hammer CS. Contextual variation, familiarity, academic literacy, and rural adolescents’ idiom knowledge. Lang Speech Hear Serv Sch. 2003;34(1):69–79. https://doi.org/10.1044/0161-1461(2003/007)
55. Gresham FM. Social skills training with handicapped children: A review. Rev Edu Res. 1981;51(1):139–76. https://doi.org/10.3102/00346543051001139
56. Hutchins NS, Burke MD, Bowman-Perrott L, Tarlow KR, Hatton H. The effects of social skills interventions for students with EBD and ASD: A single-case meta-analysis. Behav Modif. 2019;44(5):773–94. https://doi.org/10.1177/0145445519846817
57. Pei J, Denys K, Hughes J, Rasmussen C. Mental health issues in fetal alcohol spectrum disorder. J Ment Health. 2011;20(5):473–83. https://doi.org/10.3109/09638237.2011.577113
58. Kriston P, Pikó B. The role of cognitive emotional self-regulation in adolescence in levels of depression, psychosomatic symptoms and subjective wellbeing. Psychiat Hung. 2017;32(2):168–77.
59. Woodward LJ, Lu Z, Morris AR, Healey DM. Preschool self-regulation predicts later mental health and educational achievement in very preterm and typically developing children. Clin Neuropsychol. 2017;31(2):404–22. https://doi.org/10.1080/13854046.2016.1251614
60. Kalberg WO, Buckley D. FASD: What types of intervention and rehabilitation are useful? Neurosci Biobehav Rev. 2007;31(2):278–85. https://doi.org/10.1016/j.neubiorev.2006.06.014
61. Millar JA, Thompson J, Schwab D, Hanlon-Dearman A, Goodman D, Koren G, et al. Educating students with FASD: Linking policy, research and practice. J Res Spec Edu Needs. 2017;17(1):3–17. https://doi.org/10.1111/1471-3802.12090
62. Eriksson PL, Wängqvist M, Carlsson J, Frisén A. Identity development in early adulthood. Dev Psychol. 2020;56(10):1968–83. https://doi.org/10.1037/dev0001093
63. Erikson EH. Identity: Youth and crisis: New York, NY: WW Norton; 1968.
64. Kroger J, Martinussen M, Marcia JE. Identity status change during adolescence and young adulthood: A meta-analysis. J Adolesc. 2010;33(5):683–98. https://doi.org/10.1016/j.adolescence.2009.11.002
65. Cummins RA, Lau ALD. Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. J Appl Res Intellect Disabil. 2003;16(2):145–57. https://doi.org/10.1046/j.1468-3148.2003.00157.x
66. Sarason SB. The psychological sense of community: Prospects for a community psychology. London: Jossey-Bass; 1977.
67. Mattson SN, Bernes GA, Doyle LR. Fetal alcohol spectrum disorders: A review of the neurobehavioral deficits associated with prenatal alcohol exposure. Alcohol Clin Exp Res. 2019;43(6):1046–62. https://doi.org/10.1111/acer.14040
68. Mash E, Wolfe D. Abnormal child psychology. 7th ed. Boston, MA: Cengage Learning; 2018.
69. Fagerlund Å, Autti-Rämö I, Kalland M, Santtila P, Hoyme HE, Mattson SN, et al. Adaptive behaviour in children and adolescents with foetal alcohol spectrum disorders: A comparison with specific learning disability and typical development. Eur Child Adolesc Psychiatry. 2012;21(4):221–31. https://doi.org/10.1007/s00787-012-0256-y
70. Makela M, Kapasi A, Pei J, McFarlane A. Supporting employment in individuals with FASD: A guide for employment professionals. PolicyWise for Children & Families in collaboration with the Canada FASD Research Network and the University of Alberta; 2018. Available from: https://canfasd.ca/wp-content/uploads/2018/09/Guide-and-Final-Report-Supporting-Employment-Success-in-FASD.pdf
71. Green CR. Fetal alcohol spectrum disorder and employment report. Prepared by C. Green and CanFASD Research Network in collaboration with the Lakeland Centre for FASD and Alberta Human Services; 2016. Available from: https://canfasd.ca/wp-content/uploads/2016/10/FASD-Employment-Report-April-2016.pdf
72. Kapasi A, Makela ML, Flannigan K, Joly V, Pei JR. Understanding employment success in adults with fetal alcohol spectrum disorder. J Voc Rehab. 2019;51:377–93. Available from: https://content.iospress.com/articles/journal-of-vocational-rehabilitation/jvr191053
73. Aubry T, Goering P, Veldhuizen S, Adair CE, Bourque J, Distasio J, et al. A multiple-city RCT of housing first with assertive community treatment for homeless Canadians with serious mental illness. Psychiatr Serv. 2015;67(3):275–81. https://doi.org/10.1176/appi.ps.201400587
74. Pei J, Carlson E, Poth C, Joly V, Patricny N, Mattson D. Creating intersections: A systematic and person-centred harmonizing framework for housing individuals with fetal alcohol spectrum disorder. Canada FASD Research Network in collaboration with the University of Alberta; 2018. Available from: https://canfasd.ca/wp-content/uploads/2019/10/FASD-X-Housing-Pei-2018_Amended-March-04-2019-dl.pdf
75. Rutman D, Van Bibber M. Parenting with fetal alcohol spectrum disorder. Int J Ment Health Addict. 2010;8(2):351–61. https://doi.org/10.1007/s11469-009-9264-7
76. Burnside L, Fuchs D. Bound by the clock: The experiences of youth with FASD transitioning to adulthood from child welfare care. First Peoples Child Fam Rev. 2013;8(1):40–61. Available from: https://fpcfr.com/index.php/FPCFR/article/view/200
77. Abraham V. An investigation into the needs of parents with fetal alcohol spectrum disorder (FASD). Prince George, British Columbia: University of Northern British Columbia; 2005. https://doi.org/10.24124/2006/bpgub382
78. Harding K, Flannigan K, McFarlane A, Reid D, Wilson M. Parenting with fetal alcohol spectrum disorder: Needs, challenges, and opportunities for support and research. Canada FASD Research Network; 2020. Available from: https://canfasd.ca/wp-content/uploads/publications/Parenting-Issue-Paper-Final.pdf