Psychological Stress, Depression, Coping Strategies among Mothers Of Children with Autism Spectrum...
Transcript of Psychological Stress, Depression, Coping Strategies among Mothers Of Children with Autism Spectrum...
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Psychological Stress, Depression, Coping Strategies among Mothers
Of Children with Autism Spectrum Disorder And Down
Syndrome: A Comparative Study
By:Gimeno, ona G!
"icente, "enice #ouise"ictorio, Samuel $!Far Eastern University
Chapter %
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&'()OD*C(&O'
Raising a child with autism spectrum disorder (ASD) and Down Syndrome
(DS) is uniuely challenging to parents! "he children#s restricted social$
communicative and emotional competencies$ their uneven cognitive
development$ and their maladaptive %ehavior place tremendous stress on
parents o& children with ASD (Davis ' arter$ **+, -astings ' .ohnson$ **/)!
0n comparison to mothers o& typically developing ("D) children and mothers o&
children with other disa%ilities$ mothers o& children with ASD and DS report
elevated stress levels (Eisenhower$Ba1er$ ' Blacher$ **2, Estes$ et al!$ **3,
4ontes ' -alterman$ **5, Rao ' Beidel$ **3) and they are at an increased
ris1 &or depression (6lsson ' -wang$ **/)!6nly recently$ research has &ocused
on mothers# e7perience o& having a child with ASD and DS! 0t seems$ however$
very important to understand what it is li1e to %e a parent o& a child with ASD
and DS$ given the increased involvement o& parents in the early intervention o&
their child (Shields$ **/)! Accordingly$ several authors recommend to assess
mother#s well8%eing %e&ore implementing any parenting intervention and to
address symptoms o& stress and depression$ in order to ma7imi9e intervention
outcome (uhn ' arter$ **;, Rao ' Beidel$**3)! 6therwise$ stress and
depressive symptoms may inter&ere with mother#s a%ility to engage in
interventions &or her child!
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4ost o& the parents are a&raid or ashamed to discuss the truth to their
&amily or relatives since they are not sure whether they could gain positive
response &rom them or possi%ly they#ll %lame them! Another &actor is the
society$ the discrimination which is o&ten %ased on ignorance$ pre
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it doesn#t help the child or resolve the %lame issue (.ohnson$ Ring$ Anderson$ '
4arlow$ **2, 4elny1 et al!$ **;, =inelli$ ***, "eti$ -ess$ ' 6#onnell$ **2)
0n /3*+$ Eugen Bleuler coined the word ?autism? in schi9ophrenic
patients who screened themselves o&& and were sel&8a%sor%ed! And 0n /3@$ the
American child psychiatrist >eo anner descri%ed // children with the &ollowing
common traits: impairments in social interaction$ anguish &or changes$ good
memory$ %elated echolalia$ over sensitivity to certain stimuli (especially sound)$
&ood pro%lems$ limitations in spontaneous activity$ good intellectual potential$
o&ten coming &rom talented &amilies! -e called the children autistic!
Earlier in /3@$ United States o& America estimated that children out o&
/*$*** were diagnosed with Autism! 0n the late /33*#s$ Autism prevalence rates
reached ;* out o& every /*$*** %irths with the rates increasing when including
all disorders o& the Autism Spectrum (ing ' =otter$ **)! "he disorders that
&rom the Autism Spectrum include Rett#s Disorder$ hildhood Disintegrative
Disorder$ Asperger#s Disorder$ and =ervasive Developmental Disorders8not
otherwise speci&ied! hildren diagnosed with any ASD have symptoms that vary
&rom mild to severe$ and all e7perience some degree o& impairment in their
communication s1ills$ social interactions$ and %ehaviors! For e7ample$ some
Autistic children are largely non8ver%al$ some have emotional "antrums$ and
some engage in repetitive %ehaviors (e!g! hand &lapping) (Cational 0nstitute o&
hild -ealth and -uman Development$ **+)!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R15http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R15http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R31http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R37http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R41http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R31http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R37http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R41http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R15http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770735/#R15 -
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Autism is a developmental disa%ility signi&icantly a&&ecting ver%al and
nonver%al communication and social interaction$ generally evident %e&ore age
three$ that adversely a&&ects a child#s educational per&ormance! 6ther
characteristics o&ten associated with autism are engaging in repetitive activities
and stereotyped movements$ resistance to environmental change or change in
daily routines$ and unusual responses to sensory e7periences! "he term autism
does not apply i& the child#s educational per&ormance is adversely a&&ected
primarily %ecause the child has an emotional distur%ance (0DEA **@)!
-aving a child with ASD does not only a&&ect parents$ %ut it also poses a
threat to the well8%eing o& the whole &amily! E7isting research e7ploring parent#s
e7periences with a child with ASD points to impairments o& &amily &unctioning
such as giving up normal &amily activities and outings#$ lac1 o& spontaneity or
&le7i%ility in &amily li&e#$ lac1 o& personal social activities#$ stress surrounding the
marital relationship#$ and di&&iculties to maintain employment or to pursue
outside activities# (-utton ' aron$ **2, 4ontes ' -alterman$ **5, 4yers$
4ac1intosh$ ' oin ochel$ **3, =helps$ 4cammon$ uensch$ ' olden$
**3)!
During /+;; a British physician$ .ohn >angdon Down$ &or whom the
syndrome is now named$ &irst descri%ed Down syndrome$ as 4ongolism!G "he
term Down syndrome didn#t %ecome the accepted term until the early /35*s!
4ore was learned a%out the condition in /323 when French
=ediatricianHeneticist =ro&essor .erome >e
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with Down syndrome have an e7tra chromosomeI
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-aving a child with down syndrome lead to changes in the li&estyle o& the
whole &amily! 0denti&ication and acceptance o& learning disa%ilities are di&&icult
processes$ and promoting the childKs optimal development reuire adaptation %y
all &amily mem%ers$ whose characteristics$ as well as the degree o& a&&iliation
and support among them$ have great in&luence on these li&estyle changes$ %oth
in terms o& uality and uantity Risdal and Singer (**@)!
Stressors come along with parenting any child! -owever$ research has
shown that when a child has Down syndrome$ parents are o&ten at a higher ris1
&or many negative psychological outcomes (Schieve$ **5)! 0n dealing with the
intellectual$ linguistic$ and %ehavioral issues that may characteri9e their child#s
disa%ility$ parents o& children with Down syndrome needs o&ten must pay more
medical %ills$ are less a%le to &ocus on the lives o& their other children$ and may
have to spend more time at home with the child$ reducing time &or themselves
(Stoneman$ **5$ p! /*/@)!
Based on previous research$ i& there is one developmental disa%ility &or
parents that can %e called at all advantageousG$ that disorder is Down
syndrome! =revious research %y L! Stoneman (**5) claims that compared to
Autism there is a Down syndrome advantageG &or parents! =arents o& children
with Down syndrome have %een compared to parents o& children with Autism$
and the parents o& the Down syndrome children have lower levels o& depression$
higher levels o& sel&8reported warm parenting$ and higher levels o& maternal
warmth o%served %y others (Stoneman$ **5$ p! /*/@)! 6ther research shows
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similar results as parents o& children with Down syndrome e7perience less
stress and more rewards compared to parents o& children with Autism Spectrum
Disorder (-odapp$ >y$ Fidler$ ' Ricci$ **/)!
Feelings o& guilt a%out not doing enough &or one o& your children# was in
no way signi&icantly associated with parenting cognitions a%out the other child$
pro%a%ly %ecause the range o& this measure was limited! By contrast$ mothers#
%elie&s o& sel&8e&&icacy and agency a%out parenting one o& their children were
signi&icantly correlated with the %elie&s a%out her other child! "his &inding is very
important$ given the lower sel&8e&&icacy %elie&s we detected in mothers towards
their child with ASD and DS$ and thus the possi%le negative impact on mothers#
%elie&s towards their "D child! Furthermore$ depressive &eelings a%out the
children with ASD and children with DS were also negatively associated with
mothers# sel&8e&&icacy %elie&s a%out parenting their "D child$ %ut this association
appears to %e mediated %y maternal sel&8e&&icacy %elie&s a%out the children with
ASD and DS (-astings et al!$ **2)!
Statement of the Prolem
"his study attempts to determine the level o& psychological stress$ depression
and coping strategies among mothers o& children with Autism and Down
syndrome! "he 4aternal involvement$ preparation and acceptance in handling
their child and use the results to give &uture recommendations in order to provide
appropriate coping strategies!
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Speci&ic =ro%lems:
/! hat is the pro&ile o& the motherHs o& children with Autism Spectrum
DisorderHDown Syndrome in terms o&:
/!/ age$
/! gender$
/! civil Status
/!@ educational attainments$
/!2 num%er o& children in the &amily$ and
/!; occupations
! 0nto what e7tent do mothers o& Autism Spectrum Disorder and Down
syndrome di&&er in e7periencing psychological stress in terms o&:
!/ e7ternal Stress
!/!/ onditions o& the child with ASDHDSM
!/! Financial Di&&icultiesM
!/! =ro%lems in the &amilyM
! internal Stress
!!/ Feelings %y %eing
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@! 0n what ways do mothers o& ASD and DS di&&er in terms o& coping strategies in
handling their childrenM
-ypothesis of the study
"he &ollowing null hypotheses will %e tested:
/! "here is no signi&icant di&&erence %etween children with Autism and Down
syndrome
! "here is no signi&icant di&&erence %etween the psychological stress among
mothers o& children with Autism and Down syndrome
! "here is no signi&icant di&&erence %etween the depression among mothers o&
children with Autism and Down syndrome
@! "here is no signi&icant di&&erence %etween the coping strategies that mothers
o& children with Autism and Down syndrome use
2! "here is no signi&icant di&&erence on the tas1 and responsi%ilities o& the
mothers o& children with Autism and Down syndrome
Significance of the Study
"he purpose o& this study was to o%tain an understanding o& the uniue
e7periences o& 4others who have children at ris1 &or or identi&ied with an autism
spectrum disorder or Down syndrome and their e7periences with the stages o&
coping up$ strategies and early intervention! Results suggested that 4others
have di&&erent e7periences related to their participation in services and
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interactions with service providers$ as well as varying &eelings a%out services!
0mplications &or service providers are discussed in relation to recogni9ing the
importance o& 4others participation$ matching services to the needs o& the
&amily$ and incorporating interpersonal s1ills into early intervention practice with
&amilies o& young children with autism spectrum disorder and Down syndrome!
"he aim o& the study was to investigate the perceived stress o& %oth
mothers o& children diagnosed with ASD and DS$ which is de&icits within the
areas o& speech$ socia%ility$ sensoryHcognitive awareness$ and
healthHphysicalH%ehavior! "he prediction that all &our dimensions o& speech$
socia%ility$ sensoryHcognitive awareness$ and healthHphysicalH%ehavior would
signi&icantly predict perceived stress o& %oth mothers was partially supported %y
multiple regression analysis! "he study &ound that the dimension o& socia%ility
was the only signi&icant predictor o& perceived stress in mothers! "hese &indings
are inconsistent with past research that suggests mothers are more a&&ected %y
%ehavioral8%ased de&icits! Furthermore$ these results are inconsistent with past
&indings that have suggested that each o& the dimensions is signi&icant predictors
o& parental stress!
"he present research is relevant and timely %ecause through an interview
and survey we would %e a%le to 1now the level o& psychological stress$
depression and coping strategies each parents used in handling their child!
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0n outline$ this study is signi&icant in respect to the &ollowing:
/! Parentsto cope with the services they need and they will need in order to
cope with their needs and &or them to %ecome psychologically healthy in
handling their hilds needs and support!
! Professional in identi&ying their involvement during and a&ter the
recommendation process! "his study will show the necessity o& wor1ing hand
in hand with mothers to provide necessary measures to sa&eguard the
mission!
! .uture researchers this study may %ecome a spring%oard &or adopting
signi&icant studies in connection o& 1nowing the stress$ depression and
strategies used %y mothers o& children with ASD and DS that may help &uture
stretch the %oundaries o& e7cellence in uality management and give
accurate recommendations!
(heoretical .ramewor+
"his study measured the psychological stress$ depression and coping
strategies among parents o& children with Autism and Down syndrome!
"hree ma
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parent as at least one o& the mechanisms through which child &actors in&luence
parenting stress! "hese theories &eature transactional e&&ects$ such that
parenting stress is the result o& the other &actors suggested$ and also contri%utes
to the system over time!
"he &irst theory$ the =arent8hild 0nteractive Stress 4odel$ proposed %y
4ash and
.ohnston (/33*) holds that child characteristics are the primary contri%utors to
parent8child stress$ %ut that environmental &actors also have direct in&luences on
stress! "his theory also suggests that parent8child stress a&&ects child$ parent$
and environmental characteristics! Unli1e the other theories o& parenting stress
that will %e discussed$ this theory addresses parent8child interactive stressG
rather than parenting stress more generally!
"he authors descri%e parent8child interactive stress as one aspect o&
parenting stress, it is de&ined as the stress which mani&ests itsel& in parent8child
con&lict (4ash ' .ohnston$ /33*)! 0n this model$ the e&&ects o& child and
environmental stressors are mediated %y parental characteristics$ which nota%ly
include parental cognitions$ and more speci&ically$ attri%utions &or child
%ehaviour! 6ther parent characteristics that 4ash and .ohnston suggest
mediate child and environmental characteristics include a&&ective states$
personality$ %ehavioural repertoires$ and health ognitions are characteri9ed in
this theory %y their a&&ect8generating and motivational properties! As such$ they
are presumed to %e a%le to e7acer%ate$ reduce$ or prevent parent8child stress!
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parenting stress$ "he =arenting Stress 0nde7 (=S0, /3+H/332)! Although this
theory is the oldest$ it still dominates the literature! Rather than a theory that
e7plains the mechanism or howG o& parenting stress$ this ecological theory more
care&ully elucidates potential mediators and moderators o& parenting stress!
A%idin proposes that parenting stress is determined %y parent &actors$ child
&actors$ and situational &actors! 0n this theory parent &actors are de&ined as
parental attachment$ sense o& competence$ and depression, child &actors as
adapta%ility$ accepta%ility$ demandingness$ mood$ hyperactivity$ and %eing
rein&orcing to parent, and situational &actors as role restriction (the impact o&
parenthood on the parent#s other li&e roles)$ parental health$ social
supportHisolation$ and spousal relationship (support and relational con&lict)!
6utside li&e stressors are seen as glo%al &actors that can e7acer%ate parenting
stress without having any direct e&&ects on parenting stress! 0n this theory$
parenting stress is proposed to negatively a&&ect parenting (%ehaviours)$ which
then a&&ects child outcomes!
A%idin#s theory has several commonalities with Bels1y#s (/3+@) process
model o& parenting! "hese include the delineation o& &actors a&&ecting parenting
or parenting stress and the reciprocal interactions %etween these &actors! "here
are some di&&erences %etween these two models! "he &irst o& two su%stantive
di&&erences are that in Bels1y#s model$ the parent$ child$ and situational &actors
are presumed to determine parenting$ while in A%idin#s theory$ they are
presumed to determine parenting stress$ which then leads to dys&unctional
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parenting! "he second di&&erence is that Bels1y is clearer a%out the e&&ects o&
parenting on child outcomes! A%idin implies that parenting impacts child
outcomes in his writings (e!g!$ A%idin$ .en1ins$ ' 4caughey$ /33)$ %ut does
not ela%orate on this relationship when discussing his theory (A%idin$ /332), he
does, however$ re&erence the applica%ility o& Bels1y#s model to his wor1 (A%idin
et al!$ /33)! "he di&&erences %etween these models thus amount to the
inclusion o& the a&&ective concept through which parent$ child$ and situational
&actors a&&ect parenting practices$ and the clarity with which they lin1 parenting to
child outcomes! 6ne other minor di&&erence %ears consideration! Bels1y (/3+@)
assumes that the same processes are in e&&ect in %oth dys&unctionalG and
normalG &amilies$ while A%idin#s theory is one solely o& dys&unction! "he current
research$ in its inclusion o& %oth &amilies o& children with ADS and DS and
&amilies o& children without ADS and DS sits %alanced in the middle o& the
continuum %etween these two theories!
iven the dominance o& A%idin#s theory (/332) and its &it within the larger
parenting literature$ it was used as the conceptual &ramewor1 &or this
dissertation! 0n part$ the decision to use this theory as a guiding &ramewor1 was
made %ecause the data availa%le &or inclusion in the meta8analysis were most
directly applica%le to this theory! Although the other three theories are well8
esta%lished and discussed e7tensively within the literature (especially the 4ash
' .ohnston theory$ /33*)$ the &act that the A%idin theory maps so clearly on to
the =S0$ which is still the dominant measure o& parenting stress$ ma1es it easiest
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&or researchers to test and evaluate! 0n its &avour$ this theory more
comprehensively lists varia%les &or consideration than do other theories! "his
theory is also universally adopted %ecause it is well8considered and empirically8
in&ormed (see A%idin$ /33*$ /332)!
Conceptual Paradigm
hat is shown %elow is the &igure representing the paradigm o& the study$
the research approach used in this study was =henomenology! "hirty mothers o&
children with Down syndrome and Autism spectrum disorder who met the
inclusion criteria were selected using purposive sampling techniue &rom the
selected special schools at 4ari1ina,
Fig!/ =aradigm o& the Study
olai99iKs data analysis &ramewor1 was used to analy9e the transcripts in this
study! From the analysis o& the data$ si7 themes emerged &rom the e7periences
o& mothers o& children with DownKs syndrome and they were as &ollows,
/! 'on Acceptance /irth Of an Anormal Child! "he &irst theme was
Con acceptance N Birth o& an a%normal child! All the participants
e7pressed their &eelings o& shoc1 and depression at the moment they
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came to 1now that their child is having either Autism Spectrum Disorder
or Down syndrome$ also they were an7ious a%out their child condition!
! #ifestyle Changes! "he second theme was li&estyle changes! A&ter the
childKs %irth$ the immediate stressor mothers encountered was &acing a
child who was completely di&&erent &rom their e7pectations! All the
participantsKe7pectations are changed a&ter the child was diagnosedwith
Autism or Down syndrome! 4ost o& the mothers e7pressed as they need
to spend more time with the child!
! -igh $onding etween .amily Memers! "he third theme was high
%onding %etween &amily mem%ers! Every mother e7pressed they are
maintaininggood relationship with &amily mem%ers! 4ost o& the mothers
e7pressed as hus%and is most supportive person in caring children with
ASD or Down syndrome!
@! 0orried Aout the *npredictale .uture of the Child! "he &ourth
theme was worried a%out the unpredicta%le &uture o& the child! "his
re&erred to mothers worry a%outtheir child in the near and distant &uture!
0mmediate worries were the childKs school placement and health status!
4othersK ma
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2! Societal and Community Acceptance! "he &i&th theme was societal and
community acceptance! 4ost o& the mothers e7pressed they got
adeuate support &rom society! All the mothers placed an emphasis on
the importance o& social support &rom outside the &amily!
;! Positiveness towards #ife! "he si7th theme was =ositiveness towards
li&e! All the participants e7pressed their changes in way o& living a&ter the
%irth o& Down syndrome child!
"he paradigm o& the study shows a &lowchart o& how the study is to %e
underta1en and accomplished &rom the start to &inish! First an interview was
conducted in order to as1 personally the respondents a%out their insights on
having chills with ASD and DS! Ce7t$ a sel&8survey result &rom the 4others were
collated and analy9ed as a spring%oard to assess the e7tent o& involvement o&
=sychological stress$ depression and coping strategies among mothers o&
children with Autism and Down syndrome!
A survey was administered to the respondents who were directly involved
in the process o& psychological stress$ depression and coping strategies!
From the data collected and &rom the analysis made$ an action plan is
&ormulated giving recommendations at the end o& hapter @ on &uture plans to
ensure that 4others can cope to the needs o& their child and is psychologically
healthy in handling their child!
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Scope and #imitations of the Study
"he study on the =sychological stress$ depression and coping strategies
among mothers o& children with Autism Spectrum Disorder and Down syndrome
is &ocused on the stress$ depression and coping strategies among parents$
especially mothers who are &acing struggles in handling their child! "his study is
limited to * mothers o& children with Autism and Down syndrome$ /2 each
coming &rom di&&erent private and pu%lic special education schools and private
personnel all over 4etro 4anila!
"here would %e an issue relation to this study#s use o& posted
uestionnaires! Although instructions reuested parents to complete the surveys
independently$ there is no guarantee that mothers &rom the &amily did as
instructed! 0t is possi%le that the &ailure to &ind signi&icant results and variance in
the dimensions was due to respondents answering in accordance with demand
characteristics or social desira%ility! Any sel&8report measure is vulnera%le to
such issues, however$ administering surveys in controlled conditions could
eliminate these pro%lems in the &uture!
Definition of (erms
"he &ollowing de&initions have %een selected to promptly understand the terms
used on the di&&erent areas o& the study:
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Autism is a severe disorder$ with an onset %e&ore age years old$ which is
characteri9ed %y a%normalities in social &unctioning$ language and
communication$ and %y unusual interests and %ehaviors (Diagnostic and
Statistical 4anual o& 4ental Disorder$ Fourth Edition8"e7t Revision)!
Coping Strategies is the process o& managing e7ternal andHor internal
demands that ta7 or e7ceed the resources o& the person! 0t is a comple7 and
multidimensional process that is sensitive to %oth environment and the personal
o& the individual (Fritscher$ **3+)!
Depression is sadness or downswings in mood are normal reactions to li&e#s
struggles$ set%ac1s$ and disappointments!
Down syndromeis a congenital disorder in which a person is %orn with three
copies o& chromosome / (trisomy /)!
Mother re&ers to the in&ormants o& the study! "hey are mothers who have
children with special needs!
Parental Stressis the aversive psychological reaction to the demands o& %eing
a parent and it is e7perienced as negative &eelings towards sel& and toward the
child and it is attri%uted to the demands o& parenthood (Bornstein$ **+)
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Chapter 1
)eview of )elated #iteratures
During the past decade$ there has %een e7panding %ody o& research
a%out the various things that concerns the psychological stress among mothers
with children with Autism Spectrum Disorder (ASD) and Down Syndrome (DS)!
"his is however a dearth need &or researchers that will &urther study things that
clari&y the psychological stress among mothers! 0n attempt to contri%ute to this
issue$ this research was pursued!
"he present study tac1les a%out the psychological stress that the parents
undergo in their involvement regarding their child#s education speci&ically in
Special Education!
"his chapter contains opulent in&ormation that would
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s1illed and most N respected persons who were very 1nowledgea%le on this
topic! All in&ormation that were assem%led and gathered is e7pected to
contri%ute to the development o& the entire research! Such in&ormation will
supply a way &or a clearer view o& 1nowing the psychological stress among
mothers!
A! )elated Studies
Parental Stress in Mothers and .athers of Children with Autism Spectrum
Disorders 0n the article Parenting Stress in Mothers and Fathers of Children
with Autism Spectrum Disorders it is said there that one o& the most signi&icant
causes o& stress e7perienced %y parents o& children with autism is lac1 o&
adeuate pro&essional support (Bishop et al! **5, Sharpley et al!$ **+)!
=arents &ace pro%lems receiving help &rom healthcare pro&essionals already at
the stage o& diagnosis o& their child#s developmental de&icits! Su&&ice to say that$
on average$ the child is assessed %y more than &our pro&essionals %e&ore
diagnosis$ with mean time to diagnosis %eing appro7imately 8 years (Si1los '
erns$ **5)! Among the multiple &actors contri%uting to this situation$ a ma
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diagnostic and treatment institutions o&&ering speciali9ed services to individuals
with ASD!
As noted %y Corton and Drew (/33@)$
A signi&icant cause o& parents# dissatis&action with pro&essionals is
pro%lems in o%taining speci&ic in&ormation a%out autism and instructions on how
to ta1e care o& the child! A study %y Rhoades and colleagues (**5) showed
that as &ew as @*O o& physicians who give the child the diagnosis o& autism
&ollow up with additional in&ormation a%out the disorder &or parents$ and only
appro7imately /28@O give advice on choosing a medicalHeducational program!
"he results o& research %y -all and ra&& (*//) suggest that parents e7pect
pro&essionals to have up8to8date 1nowledge on availa%le sources o& support and
to %e a%le to direct the &amily so as to save it &rom %eing overloaded with
unnecessary and unneeded activities! -owever$ the results o& studies on
pro&essionals show that they are uncertain a%out the aetiology o& autism$
diagnosis and the %est types o& intervention &or a&&ected children (e!g!
4avropoulou ' =adeliadu$ **/)! Additionally$ they o&ten lac1 uali&ications
when it comes to wor1ing with children with autism (ascella ' olella$ **@)!
hen analy9ing issues in the relationships o& parents o& children with
autism with pro&essionals$ one must mention another aspect o& those relations$
associated with dated and unproven concepts o& parental contri%ution in the
aetiology o& their child#s autism! According to current consensus$ autism %elongs
to neurodevelopmental disorders$ and its aetiology is determined %y
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neuro%iological mechanisms (see: 4oldin ' Ru%enstein$ **;)! "hus$ our
1nowledge a%out the causes o& this disorder has progressed a long way since
the re&rigerator motherG hypothesis$ popular in the /32*#s (c&! 4arcus et al!$
/335)! -owever$ as Schrei%man (**2) o%serves$ theories o& psychogenic
aetiology o& autism have le&t a climate &ull o& suspicion and distrust in the
relationship %etween parents and pro&essionals! "his remar1 was con&irmed %y
the &indings o& Avdi$ ri&&in and Brough (***)$ who demonstrated that parents
suspected pro&essionals o& withholding in&ormation$ %eing
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6ne o& the aspects that determine the attitudes and %ehaviour towards
people with autism is lac1 o& awareness a%out the disorder! Autism still remains
an un1nown condition (e!g! -uws ' .ones$ */*)! "here is plenty to %e done in
this area in order to change negative attitudes towards people with autism$
especially since it has already %een demonstrated that the scope and manner o&
providing in&ormation a%out the disorder signi&icantly a&&ects the attitudes and the
level o& acceptance &or people with this disa%ility (0o%st et al!$ **3)!
Coping Strategies of Mothers having Children with Special 'eeds
According to Gehan EL Nabaw Ahmed Moawad ! PhD "that &or most
parents$ the %irth o& their child is a
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&eel a need to %e with their child at all times so they e7perience stress related to
coping with the heavy load o& care giving ("hompson$ *** ' .ames ' Ashwill$
**5 ' =eters ' .ac1son$ **3)!
Gehan EL Nabaw Ahmed Moawadalso stated in his article that mothers
can never &ully prepare themselves &or the news that their child is di&&erent!
hether the diagnosis o& a disa%ility is shortly a&ter %irth or later on in li&e$ &amily
dreams and e7pectations suddenly change! 4others may have to &ace
immediate decisions a%out their child#s medical care and treatment (ase8Smith$
**@)! 4ore ever$ mothers o& children with disa%ilities cope with the same
responsi%ilities and pressures that other mothers &ace, however$ these mothers
reported higher amounts o& stress and they e7perience greater demands made
%y caring &or a child with special needs! "his sense o& stress may %e associated
with a child#s characteristics$ greater &inancial and care8giving demands$ &eelings
o& %eing unprepared &or the tas1s o& parenting$ and a sense o& loneliness and
isolation (Sullivan8Bolyai$ Sadler ' na&l$ ** ' 6ruche ' et al$ */)!
oping involves psychological resources and coping strategies that help
to eliminate$ modi&y$ or manage a stress&ul event or crisis situation! -aving a
child with special needs creates a crisis event$ how mothers respond to the
stresses o& raising their child with special needs depends on a wide variety o&
&actors in&luencing their a%ility to cope$ such as their interpretation o& the crisis
event$ the &amily#s sources o& support$ community resources$ and &amily
structure !"he personality characteristics o& the &amily mem%ers$ their &inancial
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status$ educational level$ pro%lem8solving s1ills$ and spirituality all in&luence a
&amily#s a%ility to cope! Strong marital relationship and social support also help
determine mother ad
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children with autism have a less positive &uture perspective than mothers o&
children with Down syndrome (A%%eduto et al! **@)!
Similar results were o%tained %y Bouma and Schweit9er (/33*) in their
comparison o& mothers o& children with autism and children with a physical
disa%ility and healthy children! 4others o& children with autism e7perienced
more strain &rom pro%lems related to the child#s cognitive development$ the need
&or constant supervision$ and the perspective o& their child#s continued
dependence on care! Behaviour pro%lems o& their child with autism also &eatured
as a signi&icant contri%utor to stress! oegel et al! (/33) descri%ed a &airly
sta%le pattern o& di&&iculties e7perienced %y mothers o& children with autism$
independent &rom the child#s age$ intellectual development$ geographical region
or cultural %ac1ground! "he core stress was associated with the child#s &uture$
hisHher cognitive development$ dependence on care and social e7clusion! 0n
another study (=isula$ **5)$ mothers o& children with autism showed higher
stress levels than did mothers o& children with Down syndrome on seven o& the
/2 su%scales o& the uestionnaire o& Resources and Stress (-olroyd$ /3+5)!
"he largest di&&erences %etween groups were &ound &or overprotection H
dependency o& the child and childKs di&&icult personality characteristics! 4others
o& children with autism were also more concerned a%out their child#s
dependence on e7ternal care! Similar results were o%tained %y Dale$ .ahoda
and nott (**;)!
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$!Synthesis
"o summari9e the present review o& research on stress in parents o&
children with autism$ signi&icant sources o& stress include$ among others$
lateness and di&&iculty in o%taining diagnosis$ untypical and inconsistent
development o& the child$ and %ehavioral pro%lems$ with particular emphasis o&
challenging %ehavior in pu%lic! =arents are also hampered %y the lac1 o&
systemic solutions &or people with autism$ ignorance o& pro&essionals$ and
general lac1 o& understanding &or their pro%lems! "he situation is &urther
complicated %y the &act that people with autism reuire considera%le and wide8
ranging support &or a signi&icant portion o& their lives$ and that currently used
intervention methods &all short o& e7pectations! "hese pro%lems a&&ect various
individuals to di&&erent degrees and may actually %e untypical in a particular
case$ which is why the e7periences o& di&&erent &amilies can %e so divergent!
Severe stress e7perienced %y parents o& children with autism has
pro&ound conseuences &or their health$ well8%eing$ interactions with the child
and &amily li&e! Cevertheless$ it is still di&&icult to pinpoint the e7act mechanism
%ehind these conseuences! 0t has %een demonstrated that parents o& these
children have poorer health and lower sense o& psychological well8%eing than
parents o& children with other dys&unctions (e!g! A%%eduto et al!$ **@,)!
=hetrasuwan and 4iles (**3) have also shown that mothers o& children with
ASD who reported higher stress$ presented with more symptoms o& depression
and lower levels o& well8%eing than mothers with lower stress! 0t is not clear$
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however$ whether autism is uniue in that respect$ or i& other disorders a&&ect
parents# well8 %eing similarly! reen%erg and colleagues (**@) &ound no
di&&erences in terms o& depression$ well8%eing and health %etween mothers o&
adults with autism$ Down syndrome and schi9ophrenia
Studies have also shown that parental stress a&&ects such aspects o&
&amily li&e as spending time together$ capacity &or spontaneous and &le7i%le
planning and marital relationship (-utton ' aron$ **2)$ and lower the e&&icacy
o& early interventions in children with ASD (6s%orne et al!$ **+)! Richard
-astings (**) put &orward a theoretical model com%ining the child#s %ehavior
pro%lems with developmental disa%ility$ parental stress and parenting %ehavior!
"he model proposes the &ollowing chain o& relations: (/) child#s %ehavior
pro%lems lead to parent#s stress$ () parental stress a&&ects the way parent acts
toward the child$ () the parent#s %ehavior towards the child rein&orces the
development and persistence o& %ehavior pro%lems! "he model has not %een
&ully tested yet$ %ut some data partially support its validity (e!g! Estes et al!$
**3)!
"here is no dou%t that the application o& the stress8coping paradigm in
research on the circumstances o& parents o& children with autism has yielded a
lot o& interesting and important results$ improving our understanding o& the
di&&iculties they must &ace! "hese &indings help develop %etter methods o&
supporting &amilies o& children with autism! -owever$ data in this &ield are o&ten
inconsistent$ most li1ely due to methodological issues! Adeuate tools &or
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assessing parental stress still need to %e designed$ as shown %y validity
analyses o& e7isting uestionnaires (e!g! Laidman8Lait et al!$ */*)!
Chapter 2
M3(-ODS A'D P)OC3D*)3S
"his chapter discusses the research design$ selection and description o&
the respondents$ the instruments used and validation$ data gathering
procedures and the statistical treatment data!
)esearch Design
"he researcher used the comparative method o& research! "he sel&8made
survey uestionnaire and standardi4ed 5uestionnaire served as a tool &or
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gathering data in&ormation &or the study! "he in&ormation gathered %y the
researcher were those related to the results o& the survey given to the
respondents! "he survey aims to get analysis$ and appropriate
recommendations &or an action plan which will help the mother#s to cope with
their needs and their child#s needs!
"hree sets o& sel&8made uestionnaires were distri%uted &or the mother o&
children with ASD and mother o& children with DS! "his is to determine the
di&&erences %etween the stressors e7perienced %y the mothers! "he &irst part
includes the pro&ile o& the mothers o& children with ASD and DS, the second part
includes the di&&erent common stressors, and the third part includes the coping
strategies o& mothers! 0n the second part o& the uestionnaire$ the responses are
guided %y the &ollowing scale: E7tremely Stress&ul$ 4oderately Stress&ul$
Stress&ul$ Somewhat Stress&ul$ and Cot Stress&ul! "he researcher provided
di&&erent statements that %est descri%e the given stressors! 0n the third part o&
the uestionnaire$ the responses are guided %y the &ollowing scale: Jery help&ul$
4oderately -elp&ul$ -elp&ul$ Somewhat -elp&ul and Cot -elp&ul! Along with
these sel&8made uestionnaire is the standardi9ed Bec1 Depression 0nventory
(BD0) created %y Dr! Aaron "! Bec1! "he Bec1 Depression 0nventory (BD0) is a
/8item$ sel&8report rating inventory that measures characteristic attitudes and
symptoms o& depression (Bec1$ et al!$ /3;/)! 0n the standardi9ed uestionnaire$
the responses are guided %y minimal depression$ mild depression$ moderate
depression$ severe depression!
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appropriate 4others who are willing to share their struggles and how the
overcome those struggles in handling their child!
&nstrument used and its "alidation
0n conducting this study$ the researcher used a sel&8survey8uestionnaire
in con
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S"RESSFU>
/!**8/!@3 C6" S"RESSFU> JERP =6S0"0JE
Part 2: $ec+ Depression &nventory 6$D&7&&8 &nterpretation
(O(A# SCO)3 #3"3# O. D3P)3SS&O'
*8/ 4inimal Depression
/@8/3 4ild Depression
*8+ 4oderate Depression
38; Severe Depression
Part 9: Coping Strategy &nterpretation
SCA#3 "A#*3 D3SC)&P(&O' &'(3)P)3(A(&O'
@!**82!** E"RE4E>P -E>=FU> JERP =6S0"0JE
!2*8@!@3 46DERA"E>P
-E>=FU>
=6S0"0JE
!2*8!@3 -E>=FU> CEU"RA>
/!2*8!@3 S64E-A" -E>=FU> CEA"0JE
/!**8/!@3 C6" -E>=FU> JERP CEA"0JE
Data Gathering Procedure
"he process o& data collection that was utili9ed is the researcher8
made uestionnaire! "he researcher %egan %y giving a letter as1ing permission
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&rom the =rincipals o& the two schools to conduct a survey! 0n addition$ there was
also a cover letter e7plaining the reason and guaranteeing the con&identiality o&
the responses gathered! "he letter given was signed %y the researcher and the
advisory! "he uestionnaire was then distri%uted to the respondents! A&ter the
meeting$ the uestionnaire were distri%uted$ retrieved and data were collected!