Feeling Different: The Experience of Living with Fetal Alcohol Spectrum Disorder Brenda Stade, RN, PhD; Bonnie Stevens, RN, PhD; Wendy Ungar, PhD; Joseph

Feeling Different: Feeling Different: The Experience of Living with The Experience of Living with

Fetal Alcohol Spectrum DisorderFetal Alcohol Spectrum Disorder

Brenda Stade, RN, PhD; Brenda Stade, RN, PhD; Bonnie Stevens, RN, PhD; Wendy Ungar, Bonnie Stevens, RN, PhD; Wendy Ungar, PhD; Joseph Beyene, PhD; Gideon Koren, PhD; Joseph Beyene, PhD; Gideon Koren,

MD.MD.

Feeling Alone: Feeling Alone: Friendship Experience of Friendship Experience of

Children and Adolescents with Children and Adolescents with FASDFASD

Brenda Stade, RN, PhD; Brenda Stade, RN, PhD; Kathy Buller, RN, BScN, IBCLC, PNC(C). Kathy Buller, RN, BScN, IBCLC, PNC(C).

St. Michael’s Hospital Toronto.St. Michael’s Hospital Toronto.

Feeling Different: Feeling Different: The Experience of Living with The Experience of Living with

Fetal Alcohol Spectrum DisorderFetal Alcohol Spectrum Disorder

Brenda Stade, RN, PhD; Brenda Stade, RN, PhD; Bonnie Stevens, RN, PhD; Wendy Ungar, Bonnie Stevens, RN, PhD; Wendy Ungar, PhD; Joseph Beyene, PhD; Gideon Koren, PhD; Joseph Beyene, PhD; Gideon Koren,

MD.MD.

OutlineOutline

BackgroundBackground Research QuestionResearch Question MethodsMethods ResultsResults ConclusionConclusion Implications Implications Study of FriendshipStudy of Friendship

BackgroundBackground In Canada the In Canada the

incidence of Fetal incidence of Fetal Alcohol Spectrum Alcohol Spectrum Disorder (FASD) Disorder (FASD) has been has been estimated to be 1 estimated to be 1 in 100 live births.in 100 live births.

BackgroundBackground Caused by prenatal exposure Caused by prenatal exposure

to alcohol.to alcohol.

FASD is the leading cause of FASD is the leading cause of developmental and cognitive developmental and cognitive disabilities among Canadian disabilities among Canadian children. children.

BackgroundBackground

FASFAS Growth RestrictionGrowth Restriction

Facial AnomaliesFacial Anomalies

CNS DysfunctionCNS Dysfunction

Past ResearchPast Research

No research has examined No research has examined what life is like for children what life is like for children living with FASD.living with FASD.

Research QuestionResearch Question

What are the children’s What are the children’s experiences of living day-to experiences of living day-to day with FASD?day with FASD?

MethodsMethodsStudy DesignStudy Design

The qualitative method The qualitative method was most appropriate for was most appropriate for exploring the exploring the phenomenon of living with phenomenon of living with FASD.FASD.

PhenomenologyPhenomenology

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

Setting and SampleSetting and Sample

SettingSetting Urban and rural Urban and rural

communities communities throughout throughout Canada.Canada. SampleSample

Children ages 8 to Children ages 8 to 21 years living with 21 years living with FASD.FASD.

Inclusion Criteria: Inclusion Criteria: ChildrenChildren

Diagnosed within the FAS Diagnosed within the FAS spectrum.spectrum.

Eight to 21 years of age.Eight to 21 years of age. Able to speak and understand Able to speak and understand

English well enough to English well enough to participate in an in-depth participate in an in-depth interview.interview.

Data CollectionData Collection Data was elicited using a Data was elicited using a

unstructured interview.unstructured interview. Each participant was interviewed Each participant was interviewed

up to three times for up to three times for approximately 30 to 45 minutes. approximately 30 to 45 minutes.

1.1. What does Fetal Alcohol Spectrum What does Fetal Alcohol Spectrum Disorder mean to you? How does Disorder mean to you? How does having FASD make you feel?having FASD make you feel?

2.2. Please tell me about your Please tell me about your experience experience of living with FASD day-to-of living with FASD day-to-day? Tell day? Tell me about living with FASD?me about living with FASD?

3.3. Please describe how having FASD Please describe how having FASD affects your quality of life?affects your quality of life?

Data CollectionData Collection

1.1. Read through the entire interview Read through the entire interview several times for a sense of the several times for a sense of the whole. whole.

2.2. “Significant statements" were “Significant statements" were identified in the transcript and identified in the transcript and underlined. underlined.

3.3. Formulating meanings that Formulating meanings that emerged from the significant emerged from the significant statements.statements.

4.4. Formulated meanings were then Formulated meanings were then organized into clusters of themes. organized into clusters of themes.

Data Analysis: Data Analysis: Colaizzi’s 7-Step MethodColaizzi’s 7-Step Method

5.5. Findings were integrated into an Findings were integrated into an exhaustive description of the exhaustive description of the phenomenon of living with FASD.phenomenon of living with FASD.

6.6. Exhaustive description of the findings Exhaustive description of the findings was reduced to a descriptive was reduced to a descriptive

summary.summary. 7.7. The researcher returned to each The researcher returned to each

participant to ask if the descriptive participant to ask if the descriptive summary described his or her summary described his or her experience.experience.

Data Analysis (cont).Data Analysis (cont).

Results: Characteristics of the Results: Characteristics of the Participants (n=10)Participants (n=10)

SEXSEX FemaleFemale 3 3

MaleMale 77

AGEAGE 8-128-12 4413-1713-17 2 2 18-2118-21 44

Mean Mean Age: 13.2 Age: 13.2 yrsyrs

DIAGNOSISDIAGNOSIS FAS FAS 4 4 FAEFAE 6 6 RELATIONSHIP RELATIONSHIP Biological Biological 33Adoptive Adoptive 5 5 FosterFoster 22CULTURAL GROUPCULTURAL GROUPNative Canadian Native Canadian 4 4 Euro-Canadian Euro-Canadian 66

Participants by Participants by Geographical RegionsGeographical Regions

Centraln = 5

Eastn = 2West

n = 3

Results: Experience of Results: Experience of Living with FASDLiving with FASD

Dominant ThemesDominant Themes 1.1. Knowing the Disability Knowing the Disability

2.2. Feeling Unconnected-Feeling Feeling Unconnected-Feeling Connected Connected

3.3. Getting On With Life Getting On With Life


Overarching ConstructOverarching Construct

Feeling DifferentFeeling Different


1.1. Knowing the DisabilityKnowing the Disability a. a. Understanding the Understanding the Limitations Limitations of the Disability of the Disability

b. b. Experiencing the Experiencing the Unfairness of Unfairness of the FASD the FASD Etiology Etiology

1a. Understanding the 1a. Understanding the Limitations Limitations of the Disabilityof the Disability

8-year-old stated:8-year-old stated:

“ “ (It’s) hard, hard to keep out (It’s) hard, hard to keep out of trouble, and I am not that of trouble, and I am not that smart. I have to think. Like smart. I have to think. Like when I want to push a little kid. when I want to push a little kid. I have to stop and think.”I have to stop and think.”



““Learning is hard. The teachers Learning is hard. The teachers don’t explain things (in a don’t explain things (in a manner that allows her to manner that allows her to understand)”.understand)”.


14 year old stated: 14 year old stated:

““Sometimes I have trouble Sometimes I have trouble concentrating. I am concentrating. I am concentrating on one (activity), concentrating on one (activity), then I get distracted.”then I get distracted.”



“ “It’s hard dealing with work It’s hard dealing with work because of attention and stuff because of attention and stuff with friends. I say things they with friends. I say things they (his friends) wouldn’t. … (I) (his friends) wouldn’t. … (I) can’t keep focused.”can’t keep focused.”

1b. Experiencing the 1b. Experiencing the Unfairness of Unfairness of the FASD the FASD

EtiologyEtiology 21-year-old stated softly: 21-year-old stated softly:

““Sure my birth mother was Sure my birth mother was wrong (for drinking in wrong (for drinking in pregnancy). The disability pregnancy). The disability happened, it’s a happened, it’s a disadvantage.” disadvantage.”

1b. Experiencing the 1b. Experiencing the Unfairness of Unfairness of the FASD the FASD

EtiologyEtiology 18-year-old stated:18-year-old stated:

““I realize it was not a choice. It was I realize it was not a choice. It was not a choice I could have made. (His not a choice I could have made. (His exposure to alcohol before birth). exposure to alcohol before birth). It It is a choice I had made for me.” is a choice I had made for me.”

““FAS is an FAS is an unfairunfair thing. Seeing thing. Seeing normal kids do things that are hard normal kids do things that are hard for me to do.”for me to do.”


2.2. Feeling Unconnected-Feeling Unconnected-Feeling Feeling ConnectedConnected

a. Feeling Unconnected to a. Feeling Unconnected to Friends Friends

b. Feeling Connected to Parents b. Feeling Connected to Parents

2a. Feeling Unconnected to 2a. Feeling Unconnected to FriendsFriends


““No one likes me. There’s… no one No one likes me. There’s… no one plays with me at recess.” plays with me at recess.”

2a. Feeling Unconnected to 2a. Feeling Unconnected to FriendsFriends


““Others (kids his age) …socially Others (kids his age) …socially deal with it, coping at (social deal with it, coping at (social interactions)… they are socially interactions)… they are socially fit.”fit.”

2b. Feeling Connected to 2b. Feeling Connected to ParentsParents


““They love me and help me all They love me and help me all the time.” the time.”



““My dad and mom are great. My dad and mom are great. My mom plays with me and my My mom plays with me and my dad takes me fishing.”dad takes me fishing.”



““I am glad I am on Dexedrine. I am glad I am on Dexedrine. It was my dad who thought of It was my dad who thought of that (of using Dexedrine). It’s that (of using Dexedrine). It’s good and helps me to focus. good and helps me to focus. My dad helps me the most.”My dad helps me the most.”



““My mother is a big support. My mother is a big support. She gets things moving. She is She gets things moving. She is involved in getting supports for involved in getting supports for others (other individuals with others (other individuals with FASD).”FASD).”


3.3. Getting On With LifeGetting On With Life



““I don’t have the I don’t have the bestbest brain. … brain. … But it still works”. But it still works”.


21-year-old stated: 21-year-old stated:

““The disability happened, it’s a The disability happened, it’s a disadvantage. It is a not a disadvantage. It is a not a disability. I don’t like to use it disability. I don’t like to use it as an excuse (for not as an excuse (for not participating in life)”. participating in life)”.






““I think differently from everyone. I think differently from everyone. Everybody makes fun of me.” Everybody makes fun of me.”



“ “They (teachers, employers) They (teachers, employers) expected me to do things I expected me to do things I couldn’t. I have a hard time doing couldn’t. I have a hard time doing some things.” Others (kids his age) some things.” Others (kids his age) do things easier, get through work do things easier, get through work ….” ….”

Feeling Different:Feeling Different: 21-year-old stated:21-year-old stated:

“ “It (FAS) really does effect quality It (FAS) really does effect quality of life. It affects school, working, of life. It affects school, working, friendships…. friendships….

How does it affect me? Differently. How does it affect me? Differently. I do things differently…..My brain I do things differently…..My brain is rewired differently.”is rewired differently.”



““In the world it (FAS) is a mental In the world it (FAS) is a mental disability”. FAS is an disability”. FAS is an unfairunfair thing”. thing”.



““It (the affects that FAS has on It (the affects that FAS has on his life) is his life) is veryvery sad.” sad.”

ConclusionsConclusions

Impact of prenatal exposure to Impact of prenatal exposure to alcohol on the day-to-day life of alcohol on the day-to-day life of children with FASD is profound.children with FASD is profound.

Anticipated by articulating the Anticipated by articulating the experience of these children, that experience of these children, that this study will help others with this study will help others with FASD across Canada.FASD across Canada.

Implications for Implications for Practice and PolicyPractice and Policy

Less emphasis on behaviors Less emphasis on behaviors and more on the emotional and more on the emotional health of these children. health of these children.

Early diagnostic programs.Early diagnostic programs.

Implications for Implications for Practice and PolicyPractice and Policy

Health and educational Health and educational programs to build self-esteem programs to build self-esteem and success.and success.

Programs to deal with anxiety Programs to deal with anxiety and depression.and depression.

Emphasis on prevention Emphasis on prevention strategies.strategies.

Implications for Implications for ResearchResearch

Longitudinal studies which determine Longitudinal studies which determine if the experience of living with FASD if the experience of living with FASD changes over time.changes over time.

Development of a quality of life tool Development of a quality of life tool specific for children with FASD.specific for children with FASD.

Research that explores the meaning Research that explores the meaning of friendship for children with FASD.of friendship for children with FASD.

Feeling Alone: Feeling Alone: Friendship Experience of Friendship Experience of

Children and Adolescents with Children and Adolescents with FASDFASD

Brenda Stade, RN, PhD; Kathy Buller, RN, BScN, Brenda Stade, RN, PhD; Kathy Buller, RN, BScN, IBCLC, PNC(C). St. Michael’s Hospital, Toronto.IBCLC, PNC(C). St. Michael’s Hospital, Toronto.

Past ResearchPast Research

Only one study has examined Only one study has examined the friendship experience of the friendship experience of individuals with FASD.individuals with FASD.

Research QuestionResearch Question

What is the meaning of What is the meaning of friendship for children and friendship for children and adolescents with FASD?adolescents with FASD?

1.1. Tell me about your friends?Tell me about your friends? 2.2. What do you do when you are What do you do when you are

with with your friends?your friends? 3.3. What does friendship mean to What does friendship mean to

you? you? Tell me how your friends Tell me how your friends make you make you feel?feel?

Data CollectionData Collection

Results: Characteristics of the Results: Characteristics of the Participants (n=10)Participants (n=10)

SEXSEX FemaleFemale 6 6

MaleMale 44

AGEAGE 6 - 96 - 9 4 4 10 - 1310 - 13 3 3 14 - 1714 - 17 33

Age Mean: 11.8 yrsAge Mean: 11.8 yrs

DIAGNOSISDIAGNOSIS

FAS FAS 22PFASPFAS 33ARNDARND 55RELATIONSHIP RELATIONSHIP

Biological Biological 2 2 Adoptive Adoptive 66FosterFoster 2 2CULTURAL GROUPCULTURAL GROUP

Native Canadian Native Canadian 4 4 Euro-Canadian Euro-Canadian 66

Results: Friendship Results: Friendship ExperienceExperience

Dominant ThemesDominant Themes 1.1. Misunderstanding - Misunderstanding -

Understanding Understanding

2.2. Spending Time with Others Spending Time with Others

3.3. Needing to Belong Needing to Belong

Results: Results: Friendship ExperienceFriendship Experience


Feeling AloneFeeling Alone

ConclusionsConclusions Children and adolescents with FASD Children and adolescents with FASD

struggled with friendships.struggled with friendships. Children and adolescents identified a Children and adolescents identified a

need to have friends.need to have friends. The friendship experience for these The friendship experience for these

children may lead to low self-esteem, children may lead to low self-esteem, depression, externalizing behaviours depression, externalizing behaviours and victimization. and victimization.

Continuation of this Continuation of this StudyStudy

Adaptation: Adaptation: Friendship Quality Friendship Quality QuestionnaireQuestionnaire

Parental/Teacher Parental/Teacher Strategies Strategies

Examine quality of Examine quality of friendship on friendship on depression, QOL, depression, QOL, behaviours, and behaviours, and victimization.victimization.

Yellow RosesYellow RosesA Symbol of FriendshipA Symbol of Friendship

I just wanted you I just wanted you to knowto know

Without your Without your friendshipfriendship

I would be lost. I would be lost.

Documents

Feeling Different: The Experience of Living with Fetal Alcohol Spectrum Disorder Brenda Stade, RN, PhD; Bonnie Stevens, RN, PhD; Wendy Ungar, PhD; Joseph