FETAL ALCOHOL SPECTRUM DISORDERS AND CHALLENGES FACED BY CAREGIVERS: CLINICIANS’ PERSPECTIVES
Main Article Content
Keywords
Professional perspectives, fetal alcohol spectrum disorders, intervention development
Abstract
Background
There is a notable absence of evidence based early interventions for young children with FASD.
Objective
This study examines clinicians’ perspectives regarding the needs of caregivers of children with FASD and how such perspectives informed the development of a family - centered early intervention for young children with prenatal alcohol exposure.
Method
19 professionals who work with children with prenatal alcohol exposure and / or in out - of - home care were recruited to participate in focus groups. The facilitator used a semi - structured topic guide to elicit feedback from participants. These data we re transcribed, coded, and categorized to reflect themes in a manner informed by a grounded theory approach. A second investigator repeated the process. Codes were chosen and assigned to data by consensus.
Results
The coded data yielded five distinct pe rceived challenges faced by caregivers: (1) seeking and possibly receiving a diagnosis; (2) processing emotions and coming to terms with the child’s difficulties; (3) seeking support and belonging within a knowledgeable community; (4) developing a new unde rstanding of the child’s behavior; and (5) becoming an educator, advocate, and expert on the child and FASD.
Conclusion
Professionals believe specific capacities are essential insofar as the human service systems that caregivers engage are perceived to be under - equipped to respond to the distinct set of challenges faced by children with FASD and their families. Findings are discussed in terms of how the proposed intervention was designed to address such challenges and to cultivate those key capacities in order for families to meet their children’s needs.
References
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3. May PA, Gossage JP, Kalberg WO, et al. Prevalenc e and epidemiologic characteristics of fasd from various research methods with an emphasis on recent in ? school studies. Developmental Disabilities Research Reviews 2009;15(3):176 - 192.
4. Roberts G, Nanson JL. Best practices, fetal alcohol syndrome/fetal alco hol effects and the effects of other substance use during pregnancy: Health Canada, Canada's Drug Strategy, 2000.
5. Lupton C, Burd L, Harwood R. Cost of fetal alcohol spectrum disorders. American Journal of Medical Genetics 2004;127(1):42 - 50.
6. Stade B, Ungar WJ, Stevens B, Beyen J, Koren G. Cost of fetal alcohol spectrum disorder in canada. Canadian Family Physician 2007;53(8):1303.
7. Stade B, Ali A, Bennett D, et al. The burden of prenatal exposure to alcohol: Revised measurement of cost. The Canadian J ournal of C linical P harmacology 2008;16(1):e91 - 102.
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9. Edmonds K, Crichton S. Finding ways to teach to students with fasd: A research study. International Journal of Special Education 2008;23(1):54 - 73.
10. O'Connor MJ, Kogan N, Findlay R. Prenatal alcohol exposure and attachment behavior in children. Alcoholism: Clinical and Experimental Research 2002;26(1 0):1592 - 1602.
11. Brown JD, Sigvaldason N, Bednar LM. Foster parent perceptions of placement needs for children with a fetal alcohol spectrum disorder. Children and Youth Services Review 2005;27(3):309 - 327.
12. Olson HC, Jirikowic T, Kartin D, Astley S. Respondi ng to the challenge of early intervention for fetal alcohol spectrum disorders. Infants & Young Children 2007;20(2):172 - 189.
13. Coggins TE, Timler GR, Olswang LB. A state of double jeopardy: Impact of prenatal alcohol exposure and adverse environments on the social communicative abilities of school - age children with fetal alcohol spectrum disorder. Language, speech, and hearing services in schools 2007;38(2):117 - 127.
14. Dozier M, Higley E, Albus KE, Nutter A. Intervening with foster infants' caregivers: Targeti ng three critical needs. Infant mental health journal 2002;23(5):541 - 554.
15. Olson HC, Oti R, Gelo J, Beck S. “Family matters:” Fetal alcohol spectrum disorders and the family. Developmental Disabilities Research Reviews 2009;15(3):235 - 249.
16. Paley B, O'Conno r MJ, Kogan N, Findlay R. Prenatal alcohol exposure, child externalizing behavior, and maternal stress. Parenting: Science and Practice 2005;5(1):29 - 56.
17. Paley B, O'Connor MJ, Frankel F, Marquardt R. Predictors of stress in parents of children with fetal a lcohol spectrum disorders. Journal of Developmental & Behavioral Pediatrics 2006;27(5):396 - 404.
18. Mukherjee R, Wray E, Commers M, Hollins S, Curfs L. The impact of raising a child with fasd upon carers: Findings from a mixed methodology study in the UK . Ado ption & Fostering 2013;37(1):43 - 56.
19. Brownell MD, Hanlon - Dearman A, MacWilliam LR, et al. Use of health, education, and social services by individuals with fetal alcohol spectrum disorder. J Popul Ther Clin Pharmacol 2013;20(2):e95.
20. Gahagan S, Sharpe TT, Brimacombe M, et al. Pediatricians' knowledge, training, and experience in the care of children with fetal alcohol syndrome. Pediatrics 2006;118(3):e657 - e668.
21. Wedding D, Kohout J, Mengel MB, et al. Psychologists' knowledge and attitudes about fetal alcoho l syndrome, fetal alcohol spectrum disorders, and alcohol use during pregnancy. Professional Psychology: Research and Practice 2007;38(2):208.
22. Alexander M, Dang E, Floyd LR, et al. Educating health professionals about fetal alcohol spectrum disorders. Ame rican Journal of Health Education 2007;38(6):364 - 373.
23. Raldiris TL, Bowers TG, Towsey C. Comparisons of intelligence and behavior in children with fetal alcohol spectrum disorder and adhd. Journal of A ttention D isorders 2014:1087054714563792.
24. Chasnoff IJ, Wells AM, King L. Misdiagnosis and missed diagnoses in foster and adopted children with prenatal alcohol exposure. Pediatrics 2015:2014 - 2171.
25. Larcher V, Brierley J. Fetal alcohol syndrome (fas) and fetal alcohol spectrum disorder (fasd) - diagnosis and mo ral policing; an ethical dilemma for paediatricians. Archives of D isease in C hildhood 2014:969 - 970.
26. Senturias Y, Baldonado M. Fetal spectrum disorders: An overview of ethical and legal issues for healthcare providers. Current P roblems in P ediatric and A do lescent H ealth C are 2014;44(4):102 - 104.
27. Rojmahamongkol P, Weitzman C, Senturias Y, Augustyn M. Attention deficit hyperactivity, fetal alcohol spectrum disorder, or something else: The broad differential of kindergarten suspension. Journal of Developmental & Behavioral Pediatrics 2014;35(5):344 - 346.
28. Astley SJ. Diagnostic guide for fetal alcohol spectrum disorders: The 4 - digit diagnostic code. Seattle, WA: The University of Washington 2004.
29. Hoyme HE, May PA, Kalberg WO, et al. A practical clinical approach to diagnosis of fetal alcohol spectrum disorders: Clarification of the 1996 institute of medicine criteria. Pediatrics 2005;115(1):39 - 47.
30. Cook JL, Green CR, Lilley CM, et al. Fetal alcohol spectrum disorder: A guideline for diagnosis across the lifespan. Canadian Medical Association Journal 2015:1 - 7.
31. Doyle LR, Mattson SN. Neurobehavioral disorder associated with prenatal alcohol exposure (nd - pae): Review of evidence and guidelines for asse ssment. Current D evelopmental D isorders R eports 2015;2(3):175 - 186.
32. McLachlan K, Andrew G, Pei J, Rasmussen C. Assessing fasd in young children: Exploring clinical complexities and diagnostic challenges. J Popul Ther Clin Pharmacol 2015;22(1):e108 - e124.
33. P remji S, Benzies K, Serrett K, Hayden K. Research ? based interventions for children and youth with a fetal alcohol spectrum disorder: Revealing the gap. Child: C are, H ealth and D evelopment 2007;33(4):389 - 397.
34. Bertrand J. Interventions for children with fet al alcohol spectrum disorders: Overview of findings for five innovative research projects. Research in D evelopmental D isabilities 2009;30(5):986 - 1006.
35. Davis K, Desrocher M, Moore T. Fetal alcohol spectrum disorder: A review of neurodevelopmental findings and interventions. Journal of Developmental and Physical Disabilities 2011;23(2):143 - 167.
36. Paley B, O’Connor MJ. Behavioral interventions for children and adolescents with fetal alcohol spectrum disorders. Alcohol Research & Health 2011;34(1):64.
37. Reid N, Dawe S, Shelton D, et al. Systematic review of fetal alcohol spectrum disorder interventions across the life span. Alcoholism: Clinical and Experimental Research 2015;39(12):2283 - 2295.
38. Williams MS, Shellenberger S. How does your engine run?: A leader's gu ide to the alert program for self - regulation: TherapyWorks, Inc., 1996.
39. Wells A, Chasnoff I, Schmidt C, Telford E, Schwartz L. Neurocognitive habilitation therapy for children with fetal alcohol spectrum disorders: An adaptation of the alert program. Ameri can Journal of Occupational Therapy 2012;66:24 - 34.
40. Nash K, Stevens S, Greenbaum R, et al. Improving executive functioning in children with fetal alcohol spectrum disorders. Child Neuropsychology 2015;21(2):191 - 209.
41. Kuypers L. The zones of regulation. San Jose: Think Social Publishing 2011.
42. Niccols A. ‘Right from the start’: Randomized trial comparing an attachment group intervention to supportive home visiting. Journal of Child Psychology and Psychiatry 2008;49(7):754 - 764.
43. Hoffman S. Music together as a research - based program: Princeton, NJ: Music Together LLC, 2006.
44. Levinowitz LM. The importance of music in early childhood. General Music Today 1998;12(1):4 - 7.
45. Paley B, Auerbach BE. Children with fetal alcohol spectrum disorders in the dependency court s ystem: Challenges and recommendations. The Journal of Psychiatry & Law 2010;38(4):507 - 558.
46. Paley B, O'Connor MJ. Neurocognitive and neurobehavioral impairments in individuals with fetal alcohol spectrum disorders: Recognition and assessment. International Journal on Disability and Human Development 2007;6(2):127 - 142.
47. Laugeson EA, Paley B, Schonfeld AM, et al. Adaptation of the children's friendship training program for children with fetal alcohol spectrum disorders. Child & Family Behavior Therapy 2007;29 (3):57 - 69.
48. O'Connor MJ, Frankel F, Paley B, et al. A controlled social skills training for children with fetal alcohol spectrum disorders. Journal of C onsulting and C linical P sychology 2006;74(4):639.
49. Given LM. The sage encyclopedia of qualitative resear ch methods: Sage Publications, 2008.
50. Millward LJ. Focus groups. In GM Breakwell, S Hammond, C Fife - Schaw & JA Smith (eds.), Research M ethods in P sychology. 2006.
51. Corbin J, Strauss A. Basics of qualitative research: Techniques and procedures for developing grounded theory: Sage, 2008.
52. Duquette C, Stodel EJ, Fullarton S, Hagglund K. Educational advocacy among adoptive parents of adolescents with fetal alcohol spectrum disorder. International Journal of Inclusive Education 2012;16(11):1203 - 1221.
53. Paley B. Intr oduction: Fetal alcohol spectrum disorders — shedding light on an unseen disability. Developmental Disabilities Research Reviews 2009;15(3):167 - 169.
54. Malbin D. Trying differently rather than harder: Fetal alcohol spectrum disorders. Cambridge, England: Perfe ct Publishers, Ltd., 2002.
55. Olson HC, Montague R. An innovative look at early intervention for children affected by prenatal alcohol exposure: Bentham Science Publishers, 2011.
56. Green CR, Roane J, Hewitt A, et al. Frequent behavioural challenges in children with fetal alcohol spectrum disorder: A needs - based assessment reported by caregivers and clinicians. J Popul Ther Clin Pharmacol 2014;21(3):e405 - e420.
57. Duquette C, Stodel E, F ullarton S, Hagglund K. Secondary school experiences of individuals with foetal alcohol spectrum disorder: Perspectives of parents and their children. International Journal of Inclusive Education 2007;11(5 - 6):571 - 591.
58. Job JM, Poth CA, Pei J, et al. Toward better collaboration in the education of students with fetal alcohol spectrum disorders: Integrating the voices of teachers, administrators, caregivers, and allied professionals. Qualitative Research in Education 2013;2(1):38 - 64.
59. Koren G, Fantus E, Nulma n I. Managing fetal alcohol spectrum disorder in the public school system: A needs assessment pilot. The Canadian J ournal of C linical P harmacology 2009;17(1):e79 - 89.
2. Streissguth AP, Bookstein FL, Barr HM, et al. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental & Behavioral Pediatrics 2004;25(4):228 - 238.
3. May PA, Gossage JP, Kalberg WO, et al. Prevalenc e and epidemiologic characteristics of fasd from various research methods with an emphasis on recent in ? school studies. Developmental Disabilities Research Reviews 2009;15(3):176 - 192.
4. Roberts G, Nanson JL. Best practices, fetal alcohol syndrome/fetal alco hol effects and the effects of other substance use during pregnancy: Health Canada, Canada's Drug Strategy, 2000.
5. Lupton C, Burd L, Harwood R. Cost of fetal alcohol spectrum disorders. American Journal of Medical Genetics 2004;127(1):42 - 50.
6. Stade B, Ungar WJ, Stevens B, Beyen J, Koren G. Cost of fetal alcohol spectrum disorder in canada. Canadian Family Physician 2007;53(8):1303.
7. Stade B, Ali A, Bennett D, et al. The burden of prenatal exposure to alcohol: Revised measurement of cost. The Canadian J ournal of C linical P harmacology 2008;16(1):e91 - 102.
8. Millar JA, Thompson J, Schwab D, et al. Educating students with fasd: Linking policy, research and practice. Journal of Research in Special Educational Needs 2014.
9. Edmonds K, Crichton S. Finding ways to teach to students with fasd: A research study. International Journal of Special Education 2008;23(1):54 - 73.
10. O'Connor MJ, Kogan N, Findlay R. Prenatal alcohol exposure and attachment behavior in children. Alcoholism: Clinical and Experimental Research 2002;26(1 0):1592 - 1602.
11. Brown JD, Sigvaldason N, Bednar LM. Foster parent perceptions of placement needs for children with a fetal alcohol spectrum disorder. Children and Youth Services Review 2005;27(3):309 - 327.
12. Olson HC, Jirikowic T, Kartin D, Astley S. Respondi ng to the challenge of early intervention for fetal alcohol spectrum disorders. Infants & Young Children 2007;20(2):172 - 189.
13. Coggins TE, Timler GR, Olswang LB. A state of double jeopardy: Impact of prenatal alcohol exposure and adverse environments on the social communicative abilities of school - age children with fetal alcohol spectrum disorder. Language, speech, and hearing services in schools 2007;38(2):117 - 127.
14. Dozier M, Higley E, Albus KE, Nutter A. Intervening with foster infants' caregivers: Targeti ng three critical needs. Infant mental health journal 2002;23(5):541 - 554.
15. Olson HC, Oti R, Gelo J, Beck S. “Family matters:” Fetal alcohol spectrum disorders and the family. Developmental Disabilities Research Reviews 2009;15(3):235 - 249.
16. Paley B, O'Conno r MJ, Kogan N, Findlay R. Prenatal alcohol exposure, child externalizing behavior, and maternal stress. Parenting: Science and Practice 2005;5(1):29 - 56.
17. Paley B, O'Connor MJ, Frankel F, Marquardt R. Predictors of stress in parents of children with fetal a lcohol spectrum disorders. Journal of Developmental & Behavioral Pediatrics 2006;27(5):396 - 404.
18. Mukherjee R, Wray E, Commers M, Hollins S, Curfs L. The impact of raising a child with fasd upon carers: Findings from a mixed methodology study in the UK . Ado ption & Fostering 2013;37(1):43 - 56.
19. Brownell MD, Hanlon - Dearman A, MacWilliam LR, et al. Use of health, education, and social services by individuals with fetal alcohol spectrum disorder. J Popul Ther Clin Pharmacol 2013;20(2):e95.
20. Gahagan S, Sharpe TT, Brimacombe M, et al. Pediatricians' knowledge, training, and experience in the care of children with fetal alcohol syndrome. Pediatrics 2006;118(3):e657 - e668.
21. Wedding D, Kohout J, Mengel MB, et al. Psychologists' knowledge and attitudes about fetal alcoho l syndrome, fetal alcohol spectrum disorders, and alcohol use during pregnancy. Professional Psychology: Research and Practice 2007;38(2):208.
22. Alexander M, Dang E, Floyd LR, et al. Educating health professionals about fetal alcohol spectrum disorders. Ame rican Journal of Health Education 2007;38(6):364 - 373.
23. Raldiris TL, Bowers TG, Towsey C. Comparisons of intelligence and behavior in children with fetal alcohol spectrum disorder and adhd. Journal of A ttention D isorders 2014:1087054714563792.
24. Chasnoff IJ, Wells AM, King L. Misdiagnosis and missed diagnoses in foster and adopted children with prenatal alcohol exposure. Pediatrics 2015:2014 - 2171.
25. Larcher V, Brierley J. Fetal alcohol syndrome (fas) and fetal alcohol spectrum disorder (fasd) - diagnosis and mo ral policing; an ethical dilemma for paediatricians. Archives of D isease in C hildhood 2014:969 - 970.
26. Senturias Y, Baldonado M. Fetal spectrum disorders: An overview of ethical and legal issues for healthcare providers. Current P roblems in P ediatric and A do lescent H ealth C are 2014;44(4):102 - 104.
27. Rojmahamongkol P, Weitzman C, Senturias Y, Augustyn M. Attention deficit hyperactivity, fetal alcohol spectrum disorder, or something else: The broad differential of kindergarten suspension. Journal of Developmental & Behavioral Pediatrics 2014;35(5):344 - 346.
28. Astley SJ. Diagnostic guide for fetal alcohol spectrum disorders: The 4 - digit diagnostic code. Seattle, WA: The University of Washington 2004.
29. Hoyme HE, May PA, Kalberg WO, et al. A practical clinical approach to diagnosis of fetal alcohol spectrum disorders: Clarification of the 1996 institute of medicine criteria. Pediatrics 2005;115(1):39 - 47.
30. Cook JL, Green CR, Lilley CM, et al. Fetal alcohol spectrum disorder: A guideline for diagnosis across the lifespan. Canadian Medical Association Journal 2015:1 - 7.
31. Doyle LR, Mattson SN. Neurobehavioral disorder associated with prenatal alcohol exposure (nd - pae): Review of evidence and guidelines for asse ssment. Current D evelopmental D isorders R eports 2015;2(3):175 - 186.
32. McLachlan K, Andrew G, Pei J, Rasmussen C. Assessing fasd in young children: Exploring clinical complexities and diagnostic challenges. J Popul Ther Clin Pharmacol 2015;22(1):e108 - e124.
33. P remji S, Benzies K, Serrett K, Hayden K. Research ? based interventions for children and youth with a fetal alcohol spectrum disorder: Revealing the gap. Child: C are, H ealth and D evelopment 2007;33(4):389 - 397.
34. Bertrand J. Interventions for children with fet al alcohol spectrum disorders: Overview of findings for five innovative research projects. Research in D evelopmental D isabilities 2009;30(5):986 - 1006.
35. Davis K, Desrocher M, Moore T. Fetal alcohol spectrum disorder: A review of neurodevelopmental findings and interventions. Journal of Developmental and Physical Disabilities 2011;23(2):143 - 167.
36. Paley B, O’Connor MJ. Behavioral interventions for children and adolescents with fetal alcohol spectrum disorders. Alcohol Research & Health 2011;34(1):64.
37. Reid N, Dawe S, Shelton D, et al. Systematic review of fetal alcohol spectrum disorder interventions across the life span. Alcoholism: Clinical and Experimental Research 2015;39(12):2283 - 2295.
38. Williams MS, Shellenberger S. How does your engine run?: A leader's gu ide to the alert program for self - regulation: TherapyWorks, Inc., 1996.
39. Wells A, Chasnoff I, Schmidt C, Telford E, Schwartz L. Neurocognitive habilitation therapy for children with fetal alcohol spectrum disorders: An adaptation of the alert program. Ameri can Journal of Occupational Therapy 2012;66:24 - 34.
40. Nash K, Stevens S, Greenbaum R, et al. Improving executive functioning in children with fetal alcohol spectrum disorders. Child Neuropsychology 2015;21(2):191 - 209.
41. Kuypers L. The zones of regulation. San Jose: Think Social Publishing 2011.
42. Niccols A. ‘Right from the start’: Randomized trial comparing an attachment group intervention to supportive home visiting. Journal of Child Psychology and Psychiatry 2008;49(7):754 - 764.
43. Hoffman S. Music together as a research - based program: Princeton, NJ: Music Together LLC, 2006.
44. Levinowitz LM. The importance of music in early childhood. General Music Today 1998;12(1):4 - 7.
45. Paley B, Auerbach BE. Children with fetal alcohol spectrum disorders in the dependency court s ystem: Challenges and recommendations. The Journal of Psychiatry & Law 2010;38(4):507 - 558.
46. Paley B, O'Connor MJ. Neurocognitive and neurobehavioral impairments in individuals with fetal alcohol spectrum disorders: Recognition and assessment. International Journal on Disability and Human Development 2007;6(2):127 - 142.
47. Laugeson EA, Paley B, Schonfeld AM, et al. Adaptation of the children's friendship training program for children with fetal alcohol spectrum disorders. Child & Family Behavior Therapy 2007;29 (3):57 - 69.
48. O'Connor MJ, Frankel F, Paley B, et al. A controlled social skills training for children with fetal alcohol spectrum disorders. Journal of C onsulting and C linical P sychology 2006;74(4):639.
49. Given LM. The sage encyclopedia of qualitative resear ch methods: Sage Publications, 2008.
50. Millward LJ. Focus groups. In GM Breakwell, S Hammond, C Fife - Schaw & JA Smith (eds.), Research M ethods in P sychology. 2006.
51. Corbin J, Strauss A. Basics of qualitative research: Techniques and procedures for developing grounded theory: Sage, 2008.
52. Duquette C, Stodel EJ, Fullarton S, Hagglund K. Educational advocacy among adoptive parents of adolescents with fetal alcohol spectrum disorder. International Journal of Inclusive Education 2012;16(11):1203 - 1221.
53. Paley B. Intr oduction: Fetal alcohol spectrum disorders — shedding light on an unseen disability. Developmental Disabilities Research Reviews 2009;15(3):167 - 169.
54. Malbin D. Trying differently rather than harder: Fetal alcohol spectrum disorders. Cambridge, England: Perfe ct Publishers, Ltd., 2002.
55. Olson HC, Montague R. An innovative look at early intervention for children affected by prenatal alcohol exposure: Bentham Science Publishers, 2011.
56. Green CR, Roane J, Hewitt A, et al. Frequent behavioural challenges in children with fetal alcohol spectrum disorder: A needs - based assessment reported by caregivers and clinicians. J Popul Ther Clin Pharmacol 2014;21(3):e405 - e420.
57. Duquette C, Stodel E, F ullarton S, Hagglund K. Secondary school experiences of individuals with foetal alcohol spectrum disorder: Perspectives of parents and their children. International Journal of Inclusive Education 2007;11(5 - 6):571 - 591.
58. Job JM, Poth CA, Pei J, et al. Toward better collaboration in the education of students with fetal alcohol spectrum disorders: Integrating the voices of teachers, administrators, caregivers, and allied professionals. Qualitative Research in Education 2013;2(1):38 - 64.
59. Koren G, Fantus E, Nulma n I. Managing fetal alcohol spectrum disorder in the public school system: A needs assessment pilot. The Canadian J ournal of C linical P harmacology 2009;17(1):e79 - 89.