A LONG JOURNEY: BIOLOGICAL AND NON-BIOLOGICAL PARENTS’ EXPERIENCES RAISING CHILDREN WITH FASD
Main Article Content
Keywords
Fetal Alcohol Spectrum Disorders (FASD), parenting, qualitative research
Abstract
Background
Research evaluating the experiences of birth and adoptive parents raising children with a fetal alcohol spectrum disorder (FASD) is needed to ascertain facilitating factors and barriers to successful family functioning. Qualitative approaches to parents’ experiences can help us better understand in what ways families need support and can also be used to guide quantitative research in this area.
Objectives
The present study is a qualitative, descriptive investigation of parents’ experiences raising children with FASD in an Alberta city and environs.
Methods
Eleven participants, consisting of biological (3), adoptive (7), and foster (1) parents were interviewed using an unstructured format in order to enable them to share their “as-is” experience. A phenomenological-hermeneutic approach and thematic analysis was used to analyze and organize the data into themes.
Results
Nine central themes were derived from the interviews: 1) something’s not right; 2) receiving a diagnosis; 3) attitudes toward birth parents; 4) living in a war zone; 5) understanding my child; 6) getting support; 7) re-defining success; 8) lifelong parenting; and 9) my child’s gifts. Sub-themes were derived from several of these central themes. Descriptions of central and sub-themes are provided as data from each are presented.
Conclusions
By better understanding parents’ experiences, family members, teachers, professionals, support personnel, and the community can better support parents of children with FASD. This support is needed in order to promote stable environments for families raising children with FASD, which has been identified as a critical protective factor to promote lifelong successes for those living with the disorder.
References
2. Jones KL, Smith DW. Recognition of the fetal alcohol syndrome in early infancy. Lancet 1973;2(7836):999-1001.
3. Jones KL, Smith DW, Streissguth AP, Myrianthopoulos NC. Outcome in offspring of chronic alcoholic women. Lancet 1974 Jun 1;1(7866):1076-8.
4. Kodituwakku PW. Neurocognitive profile in children with fetal alcohol spectrum disorders. Dev Disabil Res Rev 2009;15(3):218-24.
5. Mattson SN, Riley EP, Gramling L, Delis DC, Jones KL. Heavy prenatal alcohol exposure with or without physical features of fetal alcohol syndrome leads to IQ deficits. J Pediatr 1997 Nov;131(5): 718-21.
6. Rasmussen C. Executive functioning and working memory in fetal alcohol spectrum disorder. Alcohol Clin Exp Res 2005 Aug;29(8):1359-67.
7. Coles CD, Platzman KA, Lynch ME, Freides D. Auditory and visual sustained attention in adolescents prenatally exposed to alcohol. Alcohol Clin Exp Res 2002 Feb;26(2):263-71.
8. Mattson SN, Riley EP. Implicit and explicit memory functioning in children with heavy prenatal alcohol exposure. J Int Neuropsychol Soc 1999 Jul;5(5):462-71.
9. McGee CL, Fryer SL, Bjorkquist OA, Mattson SN, Riley EP. Deficits in social problem solving in adolescents with prenatal exposure to alcohol. Am J Drug Alcohol Abuse 2008;34(4):423-31.
10. Mattson SN, Schoenfeld AM, Riley EP. Teratogenic effects of alcohol on brain and behavior. Alcohol Research & Health 2001;25(3):185-191.
11. Streissguth AP. Recent advances in fetal alcohol syndrome and alcohol use in pregnancy. In: Dharam P. Agarwal, Helmut K. Seitz, editors. Alcohol in health and disease. New York, NY, US: Marcel Dekker; 2001. p 303-324.
12. 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. Journal of Developmental & Behavioral Pediatrics 2004 Aug;25(4):228-38.
13. Chudley AE, Conry J, Cook JL, Loock C, Rosales T, LeBlanc N. Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. CanMed Assoc J 2005Mar;172(Suppl):S1-S21.
14. Brown JD, Bednar LM. Parenting children with fetal alcohol spectrum disorder: A concept map of needs. Developmental Disabilities Bulletin 2003;31(2):130-54.
15. Frankel H, Frankel S, Opie SC. Service needs, environmental facilitating factors and barriers: The experience of families successfully caring for children affected by fetal alcohol spectrum disorders. Proceedings at the 8th Annual Fetal Alcohol Canadian Expertise (FACE) Research Roundtable; 2007 September 7; Winnipeg, MN. Retrieved from http://www.motherisk.org/fas6/webcast/index.html (June 28, 2010).
16. Brown JD, Bednar LM. Challenges of parenting children with a fetal alcohol spectrum disorder: A concept map. J Fam SocWork 2004;8(3):1-18.
17. Paley B, O'Connor MJ, Frankel F, Marquardt R. Predictors of stress in parents of children with fetal alcohol spectrum disorders. Journal of Developmental & Behavioral Pediatrics 2006 10//;27(5): 396-404.
18. Brown JD. Family supports for children who have alcohol-related disabilities. Developmental Disabilities Bulletin 2004;32(1):44-61.
19. Granitsas J. Experiences of adoptive parents of children with fetal alcohol syndrome. Clinical Excellence for Nurse Practitioners 2004;8(1):22-8.
20. Gardner J. Living with a child with fetal alcohol syndrome. MCN: The American Journal of Maternal/Child Nursing 2000 Sep-Oct;25(5):252-7.
21. Salmon J. Fetal alcohol spectrum disorder: New zealand birth mothers' experiences. Can J Clin Pharmacol 2008;15(2):e191-213.
22. Van Manen M. Researching lived experience: Human sciences for an action sensitive pedagogy. London, ON: The Althouse Press; 1990.
23. Rehorick DA, Taylor G. Thoughtful incoherence: First encounters with the phenomenologicalhermeneutical domain. Human Studies 1995 10//;18(4):389-414.
24. LeVasseur JJ. The problem of bracketing in phenomenology. Qual Health Res 2003 03//;13(3):408.
25. Osborne JW. Some basic existentialphenomenological research methodology for counsellors. Canadian Journal of Counselling 1990 Apr;24(2):79-91.
26. Streissguth AP. Fetal alcohol syndrome: A guide for families and communities. Baltimore, MD: Paul H. Brookes Publishing Co.; 1997.
27. Mattson SN, Riley EP. A review of the neurobehavioral deficits in children with fetal alcohol syndrome or prenatal exposure to alcohol. Alcoholism: Clinical and Experimental Research 1998 Apr;22 (2):279-94.
28. Odishaw J, Snart F. Assessment of cognitive processing in persons with FASD: A promising alternative to traditional IQ measures. Exceptionality Education Canada 2005;15(1):25-41.
29. Nevin AC, Parshuram C, Nulman I, Koren G, Einarson A. A survey of physicians knowledge regarding awareness of maternal alcohol use and the diagnosis of FAS. BMC Fam Pract 2002;3:2.
30. Hay M. A practical roadmap for the imperfect but practical-minded clinician. In: J. Turpin, G. Schmidt, editors. Fetal alcohol Syndrome/Effect: Developing a community response. Halifax: Fernwood; 1999. p 26-43.
31. Armstrong EM. Conceiving risk, bearing responsibility: Fetal alcohol syndrome and the diagnosis of moral disorder. Baltimore, MD: John Hopkins University Press; 2003.
32. Carmichael B, Pembrey M, Turner G, Barnicoat A. Diagnosis of fragile-X syndrome: The experiences of parents. Journal of Intellectual Disability Research 1999;43:47-53.
33. Ryan S, Ferguson DL. On, yet under, the radar: Students with fetal alcohol syndrome disorder. Except Child 2006 Spr;72(3):363-79.
34. Jones K. The ecology of FAS/E: Developing an interdisciplinary approach to intervention with alcohol-affected children and their families. In: J. Turpin, G. Schmidt, editors. Fetal alcohol syndrome/ effect: Developing a community response. Halifax: Fernwood; 1999. p 80-87.
35. Schonfeld AM, Mattson SN, Riley EP. Moral maturity and delinquency after prenatal alcohol exposure. J Stud Alcohol 2005 Jul;66(4):545-54.
36. Kodituwakku PW. Defining the behavioral phenotype in children with fetal alcohol spectrum disorders: A review. Neuroscience & Biobehavioral Reviews 2007;31(2):192-201.