Title: Feeling Different: The Experience of Living with Fetal Alcohol Spectrum Disorder
1Feeling 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. -
2Feeling Alone Friendship Experience of Children
and Adolescents with FASD
- Brenda Stade, RN, PhD
- Kathy Buller, RN, BScN, IBCLC, PNC(C).
- St. Michaels Hospital Toronto.
-
3Feeling 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. -
4Outline
- Background
- Research Question
- Methods
- Results
- Conclusion
- Implications
- Study of Friendship
5Background
- In Canada the incidence of Fetal Alcohol Spectrum
Disorder (FASD) has been estimated to be 1 in 100
live births.
6Background
- Caused by prenatal exposure to alcohol.
- FASD is the leading cause of developmental and
cognitive disabilities among Canadian children.
7Background
- FAS
- Growth Restriction
- Facial Anomalies
-
- CNS Dysfunction
8Past Research
- No research has examined what life is like for
children living with FASD.
9Research Question
- What are the childrens experiences of living
day-to day with FASD?
10MethodsStudy Design
- The qualitative method was most appropriate for
exploring the phenomenon of living with FASD.
11Phenomenology
- Phenomenology aims to gain an understanding of
how people interpret and give meaning to their
situation.
12Setting and Sample
- Setting
- Urban and rural communities throughout Canada.
- Sample
- Children ages 8 to 21 years living with FASD.
13Inclusion 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.
14Data Collection
- Data was elicited using a unstructured
interview. - Each participant was interviewed up to three
times for approximately 30 to 45 minutes. -
15Data 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?
16Data 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.
17Data 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.
18Results 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
-
19Participants by Geographical Regions
20Results Experience of Living with FASD
- Dominant Themes
- 1. Knowing the Disability
- 2. Feeling Unconnected-Feeling Connected
- 3. Getting On With Life
21Results Experience of Living with FASD
- Overarching Construct
- Feeling Different
22Results Experience of Living with FASD
- 1. Knowing the Disability
- a. Understanding the Limitations of the
Disability - b. Experiencing the Unfairness of the FASD
Etiology
231a. 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.
241a. 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).
251a. 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.
261a. 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.
271b. 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.
281b. 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.
29Results Experience of Living with FASD
- 2. Feeling Unconnected-Feeling Connected
- a. Feeling Unconnected to Friends
- b. Feeling Connected to Parents
302a. Feeling Unconnected to Friends
-
- 8-year-old stated
- No one likes me. Theres no one plays with me
at recess.
312a. Feeling Unconnected to Friends
-
- 18-year-old stated
- Others (kids his age) socially deal with it,
coping at (social interactions) they are
socially fit.
322b. Feeling Connected to Parents
-
- 11-year-old stated
- They love me and help me all the time.
332b. 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.
342b. 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.
352b. 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).
36Results Experience of Living with FASD
373. Getting On With Life
- 18-year-old stated
- I dont have the best brain. But it still
works.
383. 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).
39Results Experience of Living with FASD
- Overarching Construct
- Feeling Different
40Feeling Different
- 8-year-old stated
- I think differently from everyone. Everybody
makes fun of me.
41Feeling 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 .
42Feeling 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.
43Feeling Different
-
- 18-year-old stated
- In the world it (FAS) is a mental disability.
FAS is an unfair thing.
44Feeling Different
-
- 8-year-old stated
- It (the affects that FAS has on his life) is
very sad.
45Conclusions
- 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.
46Implications for Practice and Policy
- Less emphasis on behaviors and more on the
emotional health of these children. - Early diagnostic programs.
47Implications 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.
48Implications 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.
49Feeling Alone Friendship Experience of Children
and Adolescents with FASD
- Brenda Stade, RN, PhD Kathy Buller, RN, BScN,
IBCLC, PNC(C). St. Michaels Hospital, Toronto. -
50Past Research
-
- Only one study has examined the friendship
experience of individuals with FASD.
51Research Question
- What is the meaning of friendship for children
and adolescents with FASD?
52Data 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?
53Results 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
-
54Results Friendship Experience
- Dominant Themes
- 1. Misunderstanding - Understanding
- 2. Spending Time with Others
- 3. Needing to Belong
55Results Friendship Experience
- Overarching Construct
- Feeling Alone
56Conclusions
- 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.
57Continuation of this Study
- Adaptation Friendship Quality Questionnaire
- Parental/Teacher Strategies
- Examine quality of friendship on depression,
QOL, behaviours, and victimization.
58Yellow RosesA Symbol of Friendship
- I just wanted you to know
- Without your friendship
- I would be lost.