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Feeling Different: The Experience of Living with Fetal Alcohol Spectrum Disorder

Feeling Different: The Experience of Living with Fetal Alcohol Spectrum Disorder. Brenda Stade, RN, PhD; Bonnie Stevens, RN, PhD; Wendy Ungar, PhD; Joseph Beyene, PhD; Gideon Koren, MD. Feeling Alone: Friendship Experience of Children and Adolescents with FASD. Brenda Stade, RN, PhD;

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Feeling Different: The Experience of Living with Fetal Alcohol Spectrum Disorder

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  1. Feeling Different: The Experience of Living with Fetal Alcohol Spectrum Disorder Brenda Stade, RN, PhD; Bonnie Stevens, RN, PhD; Wendy Ungar, PhD; Joseph Beyene, PhD; Gideon Koren, MD.

  2. Feeling Alone: Friendship Experience of Children and Adolescents with FASD Brenda Stade, RN, PhD; Kathy Buller, RN, BScN, IBCLC, PNC(C). St. Michael’s Hospital Toronto.

  3. Feeling Different: The Experience of Living with Fetal Alcohol Spectrum Disorder Brenda Stade, RN, PhD; Bonnie Stevens, RN, PhD; Wendy Ungar, PhD; Joseph Beyene, PhD; Gideon Koren, MD.

  4. Outline • Background • Research Question • Methods • Results • Conclusion • Implications • Study of Friendship

  5. Background • In Canada the incidence of Fetal Alcohol Spectrum Disorder (FASD) has been estimated to be 1 in 100 live births.

  6. Background • Caused by prenatal exposure to alcohol. • FASD is the leading cause of developmental and cognitive disabilities among Canadian children.

  7. Background FAS • Growth Restriction • Facial Anomalies • CNS Dysfunction

  8. Past Research • No research has examined what life is like for children living with FASD.

  9. Research Question • What are the children’s experiences of living day-to day with FASD?

  10. MethodsStudy Design • The qualitative method was most appropriate for exploring the phenomenon of living with FASD.

  11. Phenomenology • Phenomenology aims to gain an understanding of how people interpret and give meaning to their situation.

  12. Setting and Sample Setting • Urban and rural communities throughout Canada. Sample • Children ages 8 to 21 years living with FASD.

  13. Inclusion Criteria: Children • Diagnosed within the FAS spectrum. • Eight to 21 years of age. • Able to speak and understand English well enough to participate in an in-depth interview.

  14. Data Collection • Data was elicited using a unstructured interview. • Each participant was interviewed up to three times for approximately 30 to 45 minutes.

  15. Data Collection • 1. What does Fetal Alcohol Spectrum Disorder mean to you? How does having FASD make you feel? • 2. Please tell me about your experience of living with FASD day-to-day? Tell me about living with FASD? • 3. Please describe how having FASD affects your quality of life?

  16. Data Analysis: Colaizzi’s 7-Step Method • 1. Read through the entire interview several times for a sense of the whole. • 2. “Significant statements" were identified in the transcript and underlined. • 3. Formulating meanings that emerged from the significant statements. • 4. Formulated meanings were then organized into clusters of themes.

  17. Data Analysis (cont). • 5. Findings were integrated into an exhaustive description of the phenomenon of living with FASD. • 6. Exhaustive description of the findings was reduced to a descriptive summary. • 7. The researcher returned to each participant to ask if the descriptive summary described his or her experience.

  18. SEX Female 3 Male 7 AGE 8-12 4 13-17 2 18-21 4 Mean Age: 13.2 yrs DIAGNOSIS FAS 4 FAE 6 RELATIONSHIP Biological 3 Adoptive 5 Foster 2 CULTURAL GROUP Native Canadian 4 Euro-Canadian 6 Results: Characteristics of the Participants (n=10)

  19. Participants by Geographical Regions

  20. Results: Experience of Living with FASD • Dominant Themes • 1. Knowing the Disability • 2. Feeling Unconnected-Feeling Connected • 3. Getting On With Life

  21. Results: Experience of Living with FASD • Overarching Construct • Feeling Different

  22. Results: Experience of Living with FASD • 1. Knowing the Disability • a. Understanding the Limitations of the Disability • b. Experiencing the Unfairness of the FASD Etiology

  23. 1a. Understanding the Limitations of the Disability 8-year-old stated: “ (It’s) hard, hard to keep out of trouble, and I am not that smart. I have to think. Like when I want to push a little kid. I have to stop and think.”

  24. 1a. Understanding the Limitations of the Disability 10-year-old stated: “Learning is hard. The teachers don’t explain things (in a manner that allows her to understand)”.

  25. 1a. Understanding the Limitations of the Disability 14 year old stated: “Sometimes I have trouble concentrating. I am concentrating on one (activity), then I get distracted.”

  26. 1a. Understanding the Limitations of the Disability 18-year-old stated: “It’s hard dealing with work because of attention and stuff with friends. I say things they (his friends) wouldn’t. … (I) can’t keep focused.”

  27. 1b. Experiencing the Unfairness of the FASD Etiology 21-year-old stated softly: “Sure my birth mother was wrong (for drinking in pregnancy). The disability happened, it’s a disadvantage.”

  28. 1b. Experiencing the Unfairness of the FASD Etiology 18-year-old stated: “I realize it was not a choice. It was not a choice I could have made. (His exposure to alcohol before birth). It is a choice I had made for me.” “FAS is an unfair thing. Seeing normal kids do things that are hard for me to do.”

  29. Results: Experience of Living with FASD • 2. Feeling Unconnected-Feeling Connected • a. Feeling Unconnected to Friends • b. Feeling Connected to Parents

  30. 2a. Feeling Unconnected to Friends 8-year-old stated: “No one likes me. There’s… no one plays with me at recess.”

  31. 2a. Feeling Unconnected to Friends 18-year-old stated: “Others (kids his age) …socially deal with it, coping at (social interactions)… they are socially fit.”

  32. 2b. Feeling Connected to Parents 11-year-old stated: “They love me and help me all the time.”

  33. 2b. Feeling Connected to Parents 10-year-old stated: “My dad and mom are great. My mom plays with me and my dad takes me fishing.”

  34. 2b. Feeling Connected to Parents 13-year-old stated: “I am glad I am on Dexedrine. It was my dad who thought of that (of using Dexedrine). It’s good and helps me to focus. My dad helps me the most.”

  35. 2b. Feeling Connected to Parents 21-year-old stated: “My mother is a big support. She gets things moving. She is involved in getting supports for others (other individuals with FASD).”

  36. Results: Experience of Living with FASD • 3. Getting On With Life

  37. 3. Getting On With Life 18-year-old stated: “I don’t have the best brain. … But it still works”.

  38. 3. Getting On With Life 21-year-old stated: “The disability happened, it’s a disadvantage. It is a not a disability. I don’t like to use it as an excuse (for not participating in life)”.

  39. Results: Experience of Living with FASD • Overarching Construct • Feeling Different

  40. Feeling Different 8-year-old stated: “I think differently from everyone. Everybody makes fun of me.”

  41. Feeling Different 18-year-old stated: “They (teachers, employers) expected me to do things I couldn’t. I have a hard time doing some things.” Others (kids his age) do things easier, get through work ….”

  42. Feeling Different: • 21-year-old stated: “It (FAS) really does effect quality of life. It affects school, working, friendships…. How does it affect me? Differently. I do things differently…..My brain is rewired differently.”

  43. Feeling Different 18-year-old stated: “In the world it (FAS) is a mental disability”. FAS is an unfair thing”.

  44. Feeling Different 8-year-old stated: “It (the affects that FAS has on his life) is very sad.”

  45. Conclusions • Impact of prenatal exposure to alcohol on the day-to-day life of children with FASD is profound. • Anticipated by articulating the experience of these children, that this study will help others with FASD across Canada.

  46. Implications for Practice and Policy • Less emphasis on behaviors and more on the emotional health of these children. • Early diagnostic programs.

  47. Implications for Practice and Policy • Health and educational programs to build self-esteem and success. • Programs to deal with anxiety and depression. • Emphasis on prevention strategies.

  48. Implications for Research • Longitudinal studies which determine if the experience of living with FASD changes over time. • Development of a quality of life tool specific for children with FASD. • Research that explores the meaning of friendship for children with FASD.

  49. Feeling Alone: Friendship Experience of Children and Adolescents with FASD Brenda Stade, RN, PhD; Kathy Buller, RN, BScN, IBCLC, PNC(C). St. Michael’s Hospital, Toronto.

  50. Past Research • Only one study has examined the friendship experience of individuals with FASD.

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