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 Background Research Question Research Question Methods Methods Results Results Conclusion Conclusion Implications Implications Study of Friendship 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. 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. Caused by prenatal exposure to alcohol. FASD is the leading cause of developmental and cognitive disabilities among Canadian children. FASD is the leading cause of developmental and cognitive disabilities among Canadian children.

7. Background FAS Growth Restriction Growth Restriction Facial Anomalies Facial Anomalies CNS Dysfunction 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. Methods Study 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. Urban and rural communities throughout Canada.Sample Children ages 8 to 21 years living with FASD. Children ages 8 to 21 years living with FASD.

13. Inclusion Criteria: Children Diagnosed within the FAS spectrum. Diagnosed within the FAS spectrum. Eight to 21 years of age. Eight to 21 years of age. Able to speak and understand English well enough to participate in an in- depth interview. 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. Data was elicited using a unstructured interview. Each participant was interviewed up to three times for approximately 30 to 45 minutes. Each participant was interviewed up to three times for approximately 30 to 45 minutes.

15. 1.What does Fetal Alcohol Spectrum Disorder mean to you? How does having FASD make you feel? 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? 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? 3.Please describe how having FASD affects your quality of life? Data Collection

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

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

18. Results: Characteristics of the Participants (n=10) SEX Female3 Male7 Male7 AGE AGE 8-124 8-124 13-172 18-214 Mean Age: 13.2 yrs Mean Age: 13.2 yrs DIAGNOSIS FAS 4 FAE 6 RELATIONSHIP Biological 3 Adoptive 5 Foster2 CULTURAL GROUP Native Canadian 4 Euro-Canadian 6

19. Participants by Geographical Regions

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

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

22. Results: Experience of Living with FASD 1.Knowing the Disability 1.Knowing the Disability a. Understanding the Limitations of the Disability a. Understanding the Limitations of the Disability b. Experiencing the Unfairness of the FASD Etiology 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.” “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 2.Feeling Unconnected-Feeling Connected a. Feeling Unconnected to Friends a. Feeling Unconnected to Friends b. Feeling Connected to Parents 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 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 Overarching Construct Feeling Different 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 ….” “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: 21-year-old stated: “It (FAS) really does effect quality of life. It affects school, working, friendships…. “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.” 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. 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. 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. Less emphasis on behaviors and more on the emotional health of these children. Early diagnostic programs. Early diagnostic programs.

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

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

51. Research Question What is the meaning of friendship for children and adolescents with FASD? What is the meaning of friendship for children and adolescents with FASD?

52. 1.Tell me about your friends? 1.Tell me about your friends? 2.What do you do when you are with your friends? 2.What do you do when you are with your friends? 3.What does friendship mean to you? Tell me how your friends make you feel? 3.What does friendship mean to you? Tell me how your friends make you feel? Data Collection

53. Results: Characteristics of the Participants (n=10) SEX Female6 Male4 Male4 AGE AGE 6 - 94 6 - 94 10 - 133 14 - 173 Age Mean: 11.8 yrs Age Mean: 11.8 yrs DIAGNOSIS FAS 2 PFAS3 ARND5 RELATIONSHIP Biological 2 Adoptive 6 Foster 2 CULTURAL GROUP Native Canadian 4 Euro-Canadian 6

54. Results: Friendship Experience Dominant Themes Dominant Themes 1.Misunderstanding - Understanding 1.Misunderstanding - Understanding 2.Spending Time with Others 2.Spending Time with Others 3.Needing to Belong 3.Needing to Belong

55. Results: Friendship Experience Overarching Construct Overarching Construct Feeling Alone Feeling Alone

56. Conclusions Children and adolescents with FASD struggled with friendships. Children and adolescents with FASD struggled with friendships. Children and adolescents identified a need to have friends. Children and adolescents identified a need to have friends. The friendship experience for these children may lead to low self- esteem, depression, externalizing behaviours and victimization. The friendship experience for these children may lead to low self- esteem, depression, externalizing behaviours and victimization.

57. Continuation of this Study Adaptation: Friendship Quality Questionnaire Adaptation: Friendship Quality Questionnaire Parental/Teacher Strategies Parental/Teacher Strategies Examine quality of friendship on depression, QOL, behaviours, and victimization. Examine quality of friendship on depression, QOL, behaviours, and victimization.

58. Yellow Roses A Symbol of Friendship I just wanted you to know Without your friendship I would be lost.