Feeling Different: The Experience of Living with Fetal Alcohol Spectrum Disorder - PowerPoint PPT Presentation

1 / 58
About This Presentation
Title:

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

Description:

Title: BACKGROUND Author: Mount Sinai Hospital Last modified by: stadeb Created Date: 4/24/2001 11:48:29 PM Document presentation format: On-screen Show – PowerPoint PPT presentation

Number of Views:92
Avg rating:3.0/5.0
Slides: 59
Provided by: Mount74
Category:

less

Transcript and Presenter's Notes

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


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. Michaels 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 childrens 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 Colaizzis 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
Results Characteristics of the Participants
(n10)
  • DIAGNOSIS
  • FAS 4
  • FAE 6
  • RELATIONSHIP
  • Biological 3
  • Adoptive 5
  • Foster 2
  • CULTURAL GROUP
  • Native Canadian 4
  • Euro-Canadian 6
  • SEX
  • Female 3
  • Male 7
  • AGE
  • 8-12 4
  • 13-17 2
  • 18-21 4
  • Mean Age 13.2 yrs

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
  • (Its) 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 dont 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
  • Its hard dealing with work because of
    attention and stuff with friends. I say things
    they (his friends) wouldnt. (I) cant 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, its 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. Theres 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). Its 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 dont have the best brain. But it still
    works.

38
3. Getting On With Life
  • 21-year-old stated
  • The disability happened, its a disadvantage.
    It is a not a disability. I dont 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 couldnt. 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. Michaels Hospital, Toronto.

50
Past Research
  • 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?

52
Data Collection
  • 1. Tell me about 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?

53
Results Characteristics of the Participants
(n10)
  • DIAGNOSIS
  • FAS 2
  • PFAS 3
  • ARND 5
  • RELATIONSHIP
  • Biological 2
  • Adoptive 6
  • Foster 2
  • CULTURAL GROUP
  • Native Canadian 4
  • Euro-Canadian 6
  • SEX
  • Female 6
  • Male 4
  • AGE
  • 6 - 9 4
  • 10 - 13 3
  • 14 - 17 3
  • Age Mean 11.8 yrs

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

55
Results Friendship Experience
  • Overarching Construct
  • Feeling Alone

56
Conclusions
  • Children and adolescents with FASD struggled with
    friendships.
  • 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.

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

58
Yellow RosesA Symbol of Friendship
  • I just wanted you to know
  • Without your friendship
  • I would be lost.
Write a Comment
User Comments (0)
About PowerShow.com