FEELING DIFFERENT: THE EXPERIENCE OF LIVING WITH FETAL ALCOHOL SPECTRUM DISORDER
Main Article Content
Keywords
Fetal Alcohol Spectrum Disorder, children’s experience, qualitative research
Abstract
Background
In Canada the incidences of Fetal Alcohol Spectrum Disorder (FASD) is estimated to be in 1 in 100 live births Caused by prenatal exposure to alcohol, the disorder is the leading cause of developmental and cognitive disabilities among Canadian children and its effects are life lasting. No research has attempted to describe the experience of living with FASD from the perspective of Canadian children.
Purpose
The main purpose of this study was to describe the children’s experience of living with FASD.
Methods
A qualitative method was used to examine the children’s experiences. Twenty-two (22) children, aged 6 to 18 years, living in urban and rural communities across Canada participated in an unstructured in-depth interview. Data was analysed using Colaizzi’s qualitative method.
Results
For all children in this study, living day-to-day with FASD meant feeling different. Within this construct knowing the disability; feeling alone-feeling supported, and overcoming the disability were dominant themes which emerged.
Conclusion
Implications for practice and research have been described.
References
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20. Chen H, Chen Y, Yang H, Chi, H. Lived experience of epilepsy from the perspective of children in Taiwan. J Clin Nurs 2010;19(9- 10):1415-23.
21. Hanai T. Quality of life in children with epilepsy. Epilepsia 1996;3:28-32.
22. Hightower S, Carmon M, Minick P. A qualitative descriptive study of the lived experiences of school-aged children with epilepsy. J Pediatr Health Care 2002;16(3):131-7.
23. Ronen G, Rosenbaum P, Law M, Streiner D. Health-related quality of life in childhood epilepsy: the results of children's participation in identifying the components. Dev Med Child Neurol 1999;41 (8):554-9.
24. Shany M, Wiener J, Feingold L. Knowledge about and preoccupation with reading disabilities: A delicate balance. J Learn Disabil 2010;Jul 6. [Epub ahead of print]
25. Shikako-Thomas K, Lach L, Majnemer A, Nimigon J, Cameron K, Shevell M. Quality of life from the perspective of adolescents with cerebral palsy: "I just think I'm a normal kid, I just happen to have a disability". Qual Life Res 2009;18(7):825-32.
26. Siperstein G, Leffert J, Wenz-Gross M. The quality of friendships between children with and without learning problems. Am J Ment Retard 1997;102(2):111-25.
27. Stewart DA, Law MC, Rosenbaum P, Willms DG. A qualitative study of the transition to adulthood for youth with physical disabilities. Phys Occup Ther Pediatr 2001;21(4):3-21.
28. Stade B. (1994). Honouring a committment: The experience of raising a child with Fetal Alcohol Syndrome. Unpublished Master of Science Thesis, Graduate Department of Nursing, University of Toronto.
2. Banakar MK, Kudlur NS, George S. Fetal alcohol spectrum disorder (FASD). Indian J Pediatr 2009;76(11):1173-5.
3. Benz J, Rasmussen C, Andrew G. Diagnosing fetal alcohol spectrum disorder: History, challenges and future directions. Paediatr Child Health 2009;14(4):231-7.
4. Chudley AE, Conry J, Cook JL, Loock C, Rosales T, LeBlanc N. Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder. CMAJ 2005;1;172(5 Suppl):S1-S21.
5. Streissguth AP, Barr HM, Kogan J, Bookstein FL. (1996). Understanding the occurance of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). Final Reports, Centers for Disease Control and Prevention Grant No. R04/CCR888515.
6. Greenbaum RL, Stevens SA, Nash K, Koren G, Rovet J. Social cognitive and emotion processing abilities of children with fetal alcohol spectrum disorders: a comparison with attention deficit hyperactivity disorder. Alcohol Clin Exp Res 2009;33(10):1656-70. Epub 2009 Jul 15.
7. Jones KL, Hoyme HE, Robinson LK, Del Campo M, Manning MA, Chambers CD. Fetal alcohol spectrum disorders: extending the range of structural defects. Am J Med Genet 2010;152A(11): 2731-5.
8. Landgren M, Svensson L, Strömland K, Andersson Grönlund M. Prenatal alcohol exposure and neurodevelopmental disorders in children adopted from Eastern Europe. Pediatrics 2010;125(5): e1178-85.
9. Copeland B. (2002). Searching for, Finding and Experiencing Friendship: A Qualitative Study of Friendship Experiences of Seven Young Adults with Fetal Alcohol Syndrome/Effects, Master
Thesis. Victoria: BC.
10. Massey VJ. (1997). Listening to the Voiceless Ones: Woman with Fetal Alcohol Syndrome and Fetal Alcohol Effects. A Doctoral Thesis, Department of Elementary Education, University of Alberta. 11. Duquette C, Stodel E, Fullarton S, Hagglund K. Persistence in high school: experiences of adolescents and young adults with Fetal Alcohol Spectrum Disorder. J Intellect Dev Disabil 2006; 31(4): 219-31.
12. Anderson J. (1991). The phenomenological perspective. In J. Morse (Ed.), Qualitative Nursing Research: A Contemporary Dialogue (pp. 25-36). London: Sage Publications.
13. Vellone E, Sinapi N, Rastelli D. Phenomenology and phenomenological method: their usefulness for nursing knowledge and practice. Prof Inferm 2000;53(4):237-42.
14. Leininger M. (Ed.) (1985). Qualitative research methods in nursing. Orlando, FL: Grune & Tratton.
15. Denzin, N. & Lincoln, Y. (1995). Handbook of qualitative research. London: SAGE.
16. Spratling R, Coke S, Minick P. Qualitative data collection with children. Appl Nurs Res 2010; Apr 8. [Epub ahead of print].
17. Colaizzi P. (1983). Psychological research as the phenomenologist views it. In R. Vaille and M. King (Eds.), Existential phenomenological alternatives for psychology (pp.48-71). New York: Oxford University Press.
18. Barga N. Students with learning disabilities in education: managing a disability. J Learn Disabil 1996;29(4):413-21.
19. Berntsson L, Berg L, Brydolf M, Hellström A. Adolescents' experiences of well-being when living with a long-term illness or disability. Scand J Caring Sci 2007 Dec;21(4):419-25.
20. Chen H, Chen Y, Yang H, Chi, H. Lived experience of epilepsy from the perspective of children in Taiwan. J Clin Nurs 2010;19(9- 10):1415-23.
21. Hanai T. Quality of life in children with epilepsy. Epilepsia 1996;3:28-32.
22. Hightower S, Carmon M, Minick P. A qualitative descriptive study of the lived experiences of school-aged children with epilepsy. J Pediatr Health Care 2002;16(3):131-7.
23. Ronen G, Rosenbaum P, Law M, Streiner D. Health-related quality of life in childhood epilepsy: the results of children's participation in identifying the components. Dev Med Child Neurol 1999;41 (8):554-9.
24. Shany M, Wiener J, Feingold L. Knowledge about and preoccupation with reading disabilities: A delicate balance. J Learn Disabil 2010;Jul 6. [Epub ahead of print]
25. Shikako-Thomas K, Lach L, Majnemer A, Nimigon J, Cameron K, Shevell M. Quality of life from the perspective of adolescents with cerebral palsy: "I just think I'm a normal kid, I just happen to have a disability". Qual Life Res 2009;18(7):825-32.
26. Siperstein G, Leffert J, Wenz-Gross M. The quality of friendships between children with and without learning problems. Am J Ment Retard 1997;102(2):111-25.
27. Stewart DA, Law MC, Rosenbaum P, Willms DG. A qualitative study of the transition to adulthood for youth with physical disabilities. Phys Occup Ther Pediatr 2001;21(4):3-21.
28. Stade B. (1994). Honouring a committment: The experience of raising a child with Fetal Alcohol Syndrome. Unpublished Master of Science Thesis, Graduate Department of Nursing, University of Toronto.