646171

research-article2016
HPQ0010.1177/1359105316646171Journal of Health PsychologyZaidman-Zait and Curle

Article

Journal of Health Psychology

Complexity: An interpretative
1­–12
© The Author(s) 2016
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DOI: 10.1177/1359105316646171
the experiences of mothers of hpq.sagepub.com

deaf children with cochlear

implants and autism

Anat Zaidman-Zait1 and Deirdre Curle2

Abstract
The purpose of this study was to explore the experiences of parenting a child with a dual diagnosis of
childhood deafness and autism spectrum disorder who underwent cochlear implantation. Experiences of
these parents are rarely discussed within the literature. Interpretive Phenomenological Analysis was used
to examine nine mothers of boys (4–9  years old) for understanding their parenting experiences. Three
superordinate themes were identified: complexity, personal and family sacrifices and parent–professional
partnerships. These themes provide a rich account of mothers’ interpretations of their experiences, and
reflect the numerous challenges they face. This study helps expand the literature on cochlear implantation
for children with autism spectrum disorder, and discusses implications for clinical and educational practice.

Keywords
autism spectrum disorder, cochlear implantation, interpretative phenomenological analysis, meaning,
parenting

Introduction
Today, the most common habilitation approach CIs (Edwards et al., 2006), including children
for individuals with severe to profound hearing diagnosed with autism spectrum disorder
loss is cochlear implantation (Spencer and (ASD). Notably, with the increase of universal
Marschark, 2003). Cochlear implants (CIs) are newborn hearing screening, CI surgery is often
surgically implanted electronic devices that can conducted prior to children’s second birthdate;
provide a sense of sound to individuals with
severe to profound sensorineural hearing loss. 1Tel Aviv University, Israel
There is great variability reported in children’s 2University of British Columbia, Canada
outcomes (Spencer and Marschark, 2003),
Corresponding author:
especially among children with additional dis-
Anat Zaidman-Zait, Department of School Counseling and
abilities (Berrettini et al., 2008; Youm et al., Special Education, Tel Aviv University, Ramat Aviv, Tel
2012). Increasing numbers of deaf children Aviv 6997801, Israel.
with additional disabilities have been receiving Email: anatzaidman@post.tau.ac.il

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2 Journal of Health Psychology 
children diagnosed with ASD probably receive
their ASD diagnosis after receiving the CI,
unless it is a late implantation. The prevalence
of ASD and hearing loss in combination also
seems to be increasing and has been estimated
to co-occur within 1–4 per cent of children
(Szymanski et al., 2012). ASD is characterized
by deficits in reciprocal social communication,
along with the presence of restricted, repetitive
and stereotyped interests and behaviours
(American Psychiatric Association (APA),
2000, 2013). Children with this dual diagnosis
pose heterogeneous challenges in assessment,
treatment and determination of suitable mode
of communication, both pre- and post-implan-
tation (Myck-Wayne et al., 2011) and uncer-
tainty regarding expected outcomes following
CI (Wakil et al., 2014). In addition, these chil-
dren might place unique demands and chal-
lenges on their families beyond those presented
by children who are only deaf. However, very
little is known about the experience of parents
of this unique group of children.
A recent study explored the diagnostic pro-
cess of ASD among deaf children, not specifi-
cally with a CI, indicating that obtaining an
ASD diagnosis and locating appropriate ser-
vices for these children were very complicated.
Both families and professionals were chal-
lenged by the lack of information and resources
for supporting this population and were without
clear direction on finding appropriate and effec-
tive interventions (Myck-Wayne et al., 2011).
In the only study that explored experience of
parents of children with ASD and CIs, parents
of three children reported challenges in the
diagnostic process, and professionals’ limited
knowledge and expertise treating their children
(Wiley et al., 2014).
Examining parents’ experience is important
for several reasons. First, the habilitation pro-
cess following CI rests heavily on parental
involvement and has been found to improve
children’s progress (DesJardin et al., 2006).
Similarly, for a wide variety of ASD-related
interventions, parent involvement is required
(Karst and Van Hecke, 2012). Second, caring
for a child with either a CI or ASD is highly
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stressful (Hayes and Watson, 2013; Zaidman-
Zait and Most, 2005). In general, elevated lev-
els of parenting stress are potentially detrimental
to the well-being of both the children and par-
ents themselves (Crnic and Low, 2002).
Investigation of parents’ experiences could
inform and guide effective service provision for
children with CIs and ASD and their families.
The purpose of this study is to explore the expe-
riences of mothers of children who have ASD,
are deaf and are CI users. The study will expli-
cate the ways in which these mothers make
sense of their experience of living with, parent-
ing and managing their children’s disabilities.
The qualitative methodology of Interpretative
Phenomenological Analysis (IPA) was selected,
as it examines how individuals make sense of
their major life experiences (Smith et al., 2009).
IPA is dedicated to idiographic, nuanced inquiry
and is ideally suited to examining topics that are
complex and abstruse among small groups of
people (Smith and Shinebourne, 2012). It ena-
bles a fine-grained analysis of the phenomenon
under investigation and aims to achieve under-
standing from the participants’ unique and sub-
jective perspectives. This method recognizes
that the researcher must engage in an interpreta-
tive process in order to examine the ‘lived’
experience of the participant and offers a sys-
tematic approach for doing so (Smith et al.,
2009). The small size of our participating group
met the idiographical guidelines for IPA.
Method
Participants
Participants were recruited in the United States
and Canada through advertisements in online
groups and websites for parents of deaf children
with CI and for professional organizations. All
nine participants were mothers of boys with
CIs who were diagnosed with ASD, based on
either the Diagnostic and Statistical Manual of
Mental Disorders–Fourth Edition (DSM-IV) or
Diagnostic and Statistical Manual of Mental
Disorders–Fifth Edition (DSM-V) criteria
(APA, 2000, 2013). Children’s ages ranged
Zaidman-Zait and Curle 3

Table 1.  Demographic details of children.

Child’s Cause: Age HL Age ASD Age of CI Communication Education

age HL identify diagnosis first; second mode
(years) (months) (years) (months)
1 6 CMV 2 2 13; 25 Bilateral Signs, gestures, ASD specialized
vocalizations programme
2 7 Unknown 48 2 60 Unilateral Signs, gestures, D/HH Specialized
vocalizations programme
3 8 Genetic 2 3 12; 60 Bilateral Oral DD specialized
communication classroom
4 6 Unknown 3 2 years 9; 33 Bilateral Oral D/HH specialized
communication programme and
Mainstream programme
5 9 Unknown 18 2 years 25 Unilateral Early DD specialized
communication classroom
behavioura
6 6 Unknown 12 3 years 36 Unilateral Early DD specialized
communication classroom
behaviour
7 7 Preterm 6 3 years 18 Unilateral Early ASD specialized
communication Classroom
behaviour
8 5 Unknown 3 2 years 13; 13 Total D/HH specialized
communication preschool
9 4 Genetic 1 3 years 12 Unilateral Early DD specialized
communication programme
behaviour

HL: hearing loss; ASD: autism spectrum disorder; CI: cochlear implant; CMV: cytomegalovirus; D/HH: deaf/hard of
hearing; DD: developmental delays.
aEarly communication behaviour: crying, facial expression, behaviours, gestures and pointing.

from 4 to 9 years. The majority of the children
had severe to profound bilateral hearing losses
that were identified in the first year of life. All
the children received their ASD diagnosis in
their second or third year of life. Characteristics
of the children are shown in Table 1.
Procedure
This study was approved by the University
Research Ethics Committee. Mothers partici-
pated in a telephone screening interview to col-
lect information on their children’s disabilities
and to confirm that each respective participant
met the study’s inclusion criteria. Because of
the low incidence of children with both CI and
ASD, mothers were spread geographically.
Accordingly, interviews were conducted by
telephone. Telephone interviews have been
found ideal for sensitive topics and can provide
rich accounts of experiences (Trier-Bieniek,
2012). Consistent with IPA, the interview
schedule was semi-structured, inviting the par-
ticipants to talk in length about their experi-
ences of parenting their child who received CI
and was also diagnosed with ASD, allowing for
iterative exploration of the emerging topics.
Prompts were used to elicit more details where
necessary. The interview began with the prompt,
‘Please tell us the about your child and your
experience parenting him, from his birth until
today’. During the interview, parents were
asked about the use and maintenance of the CI;
intervention and their role; communication with
the child; social life and social supports for
child and family; family relationships; domestic

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4 Journal of Health Psychology 
work load; and parent emotional well-being.
Questions such as ‘Can you tell me more about
that?’ or ‘How did that make you feel?’ were
used as prompts to further explore emerging
topics. Interviews lasted from 1 to 2 hours, with
an average duration of 85 minutes.
Data analysis
Data were analysed according to the IPA five-
stage process (Smith and Shinebourne, 2012).
First, each author separately read and re-read
each transcript and made observations and
reflections focusing on content, language use,
highlighting distinctive phrases or poignant
quotes. For the second step, we transformed the
initial notes into emergent themes. These emer-
gent themes were developed to capture the
‘psychological essence’ of each piece of phrases
(Smith et al., 2009). These themes reflected
both the participants’ words and the analysts’
interpretation. Next, we looked for connections
across the themes for each case. Our process
was iterative; transcripts and earlier cases were
reviewed again as new themes emerged.
Abstraction was used to identify patterns
between themes and to group them under super-
ordinate themes. The final step involved an
iterative process of a cross-case analysis, result-
ing in themes that were written in a narrative
account with verbatim extracts to support the
themes. We analysed these data to examine how
each theme developed, as well as to identify any
inconsistencies.
To aid reflexivity, as referred by Smith et al.
(2009), we adhered to Yardley’s (2000) guide-
lines. To address sensitivity to context, we
attempted to remain alert to our own perspec-
tives, and identify any preconceived beliefs that
we brought to the interview and analysis.
Rigour and commitment were met through
lengthy in-depth interviews of parents, and then
conducting a thorough and systematic analysis.
We strived to achieve transparency by provid-
ing details about our data collection and analy-
sis according to IPA’s principles. For the
purpose of transparency, the first author is an
academic with a background in working with
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children who are deaf/hard of hearing (D/HH),
and the second author is a speech-language
pathologist and a PhD candidate who has
20 years clinical experience working with chil-
dren with hearing loss and/or developmental
disabilities.
Findings
Our aim with this study was to explore mothers’
experiences of parenting a child with CI and
ASD. Three superordinate themes were expli-
cated from the data: (1) Complexity, (2) Personal
and Family Sacrifices and (3) Parent–Professional
Partnerships. Each theme will be discussed in
turn and illustrated by direct quotations from
transcripts.
Superordinate theme: complexity
This superordinate theme encapsulates the
complexity of raising a child with a dual diag-
nosis of ASD and deafness. Mothers struggled
to understand the nature of their child’s disabil-
ity and develop a sense of closeness and mutu-
ality to their child, while dealing with negative
emotions, juggling multiple roles and making
important decisions.
Understanding the nature of the child’s disability –
integration and separation. Many mothers
described how they were forced to learn about
deafness and ASD separately – they were una-
ble to find information and services that inte-
grated both disabilities:
… I went to the deaf and hard of hearing class,
also doing all these appointments, trying to figure
it all out, because not only was I now dealing with
autism, I was dealing with the deafness, and
everything that comes with that … I had to learn
a whole new disability after I just got down a little
bit of the other disability lingo.
This complexity reflects the split in speciali-
zations of disabilities among academics, educa-
tors and health care professionals. Parents must
make efforts to coordinate care from these two
Zaidman-Zait and Curle 5
separate worlds – ASD and deafness. Thus, the
mothers struggled, usually without a profes-
sional to guide them, to acquire and integrate
the knowledge and care that is associated with
each disability, and apply them specifically to
their child.
Parent–child communication and relationships. The
children’s communication abilities had a strong
effect on how the mothers experienced the par-
ent–child relationship. To make sense of their
child’s mental experience and inner world,
mothers described how they observed their chil-
dren closely. They assigned meaning to their
behaviours, and interpreted their likes and
dislikes:
He does read facial expressions very well. He
knows when we’re upset or angry or disappointed
because he does things that he knows that are not
cool. Like he’ll get frustrated and take water and
just throw it up in the air or try and shove it and
then it will spill on us. He knows and then he’ll
look sorry – like, he’ll just pause still and look
down or hold the sides of his ears.
However, some mothers were mystified by
their children’s behaviour and intentions. One
mother described her son’s bedtime behaviour:
… You know, sometimes he kind of cries and
wants to go to bed early. Other times he just
thinks it’s party time and it’s like bouncing on the
bed at eleven o’clock at night. Sometimes he’ll
wake up real early and think something’s
hilarious. Everyone else is asleep, you know.
What in the world is funny? I never figure out
some of these things.
When the child lacked the ability to commu-
nicate his thoughts and feelings to others, this
caused the mothers to experience enormous
frustration. The mothers’ efforts to understand
and communicate with their child reflected
their desire to establish a close mutual parent–
child relationship.
Juggling multiple roles. Mothers often found
themselves taking on roles that they perceived
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as being beyond the typical parenting role. They
reflected on how those roles operated together.
One mother quipped that she was her child’s
‘Mom-ager’.
… I am his mom, his therapist, speech and
language therapist, his ABA therapist, his teacher,
his case manager, service coordinator. And I play
– I just wear a lot of hats. Whatever hat I have to
wear that day is what I have to wear.
The phrase ‘I have to’ reflected that this mother
believed that there was no choice in taking on
these additional roles. To her, this was part of
being a responsible parent – making sure that
her child received the support he needed.
Playing multiple roles was experienced as over-
whelming for some:
As far as my role goes, I have to be his advocate,
and I have to be his mom. And I have to be his
nurse. And I have to be his therapist. I have to be
everything and I’m only one person. Am I
dropping the ball? Of course! Because who could
be everything at once?
While most mothers acknowledged the chal-
lenge of taking on these new roles, many
expressed a sense of pride or accomplishment
about the results of their actions. For example,
one mother indicated,
I definitely think I had a lot to do with [my child’s
rehabilitation]. Not to toot my own horn, but it
really required a lot of advocacy on our part.
Overall, the notion of the investment in par-
enting through playing multiple roles was pre-
sent in all of our interviews. Mothers perceived
their additional roles not only as being neces-
sary to support their children’s skill develop-
ment but also as part of their identity of being a
responsible parent. Succeeding in playing these
roles led to a positive sense of achievement.
However, for some, these additional responsi-
bilities added to parent burden and stress.
Decision-making.  Mothers talked about the myr-
iad of decisions they had to make relating to
6 Journal of Health Psychology 
their children (e.g. which therapeutic or com-
municative approach to take, and which educa-
tional placements to choose). One mother
described how she and her husband struggled
with the decision of whether or not to use sign
language with her son:
It was really hard [doing auditory-verbal therapy],
because he didn’t really start to produce language
until he was closer to four. So we had to wait a lot
longer to know, is this really going to work for
him? So we, we didn’t really know. Should we
start to do sign language with him? We just felt
like, are we missing a window with language? It
was really hard.
Another related decision was about educa-
tional placement. Classrooms for deaf children
vary in their communication approaches. Some
mothers talked about how none of the available
educational placement options were a good fit
for their child because they focused either on
hearing loss or autism, but not both. When the
school team was unable to meet the child’s edu-
cational needs, the parents felt hurt and frus-
trated. One mother described how she was
‘heart-broken’ when told that her son would
need to leave the deaf school he was placed in
because the teachers were unable to manage his
behaviour. She said, ‘I never thought a deaf
school would ask a deaf child to leave. I was
devastated’.
The decisions such as communication mode
and educational placement were more difficult
because of the uncertainty around best practices
and outcomes for children with both CI and
ASD. Mothers felt that they were facing the risk
of losing valuable time during the child’s criti-
cal periods of development, thus not meeting
their responsibility of ensuring their child meet
his fullest potential. Interestingly, for the major-
ity of mothers the decision to have their child
undergo the CI procedure was an easyone.
From the mothers’ perspective, it was the best
option for providing access to hearing for their
child, with relatively low risk. Together, the
themes of understanding the nature of the
child’s disability, communication, parent–child
relationships and decision-making underscore
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the complexity that mothers experience when
raising a child with deafness and ASD. These
mothers were contending with challenging
issues beyond the typical parenting roles and
expectations.
Superordinate theme: personal and
family sacrifices
The second superordinate theme that emerged
was the notion of sacrifice made by mothers
and family members as they adjusted to their
child’s state and needs. This included both neg-
ative and positive impact.
Negative impact.  Having a deaf child with a CI
and ASD raised multiple challenges in day-to-
day life for parents. Parents described different
sacrifices that they made in order to meet their
child’s needs. One sacrifice was the mothers’
career development. Several of the mothers
gave up their jobs to become full time caregiv-
ers for their children, while experiencing some
regret about this. One mother said, ‘[Having my
child] totally turned my life upside down. I gave
up my job and everything. I basically had to
stay home, take care of him full time’.
A number of families sacrificed their com-
munity support by moving to a more metropoli-
tan centre to find specialized services. In these
cases, some families had to split up. One mother
commuted weekly to an urban community
4 hours away for her son to attend an auditory-
verbal programme, while her husband stayed in
their home community and cared for their
daughter. Another sent her daughter to live with
the father, while she cared for her son, as she
wanted to ‘save’ her daughter from the stress of
the home. These changes also had financial
consequences for the families. Other mothers
spoke of personal sacrifices, such as losing
friends or opportunities to socialize. As one
mother said, ‘I don’t know what [a social life]
is. Facebook, that’s my social life. Ha! I mean, I
have friends, I just don’t see them anymore’.
Mothers reflected that they made these sacri-
fices because they felt it was necessary for the
sake of their child. At the same time, for some
Zaidman-Zait and Curle 7
mothers, this resulted in feelings of negativity
and hopelessness. One mother could not recog-
nize any single pleasant moment in the day
while caring for her son. Other mothers
described feeling ‘overwhelmed’, ‘depressed’,
‘lost’ and ‘isolated’. While the mothers believed
that these actions were a necessary part of being
a ‘good parent’, they also acknowledged how
difficult it was.
Positive impact.  For some mothers, positive out-
comes emerged from the sacrifices they made.
They described how they became ‘better peo-
ple’. One mother felt that she became less
selfish:
I was already a strong person before I had kids
you know, and also very selfish person so I feel
like this thing happened to me to change me,
because I wasn’t headed in a good direction.
Another mother described how her other
children were positively affected by having a
sibling with disabilities: ‘My other children
have suffered significantly because of this. But
you know what? If you ask them, they’ll all tell
you it’s made them a better person’.
One parent described how caring for her
son’s unique needs brought the family members
closer together and positively impacted her:
In retrospect, I feel it’s more of a gift now. I really
do … Because I feel like what it’s done for our
family is, it’s brought us closer. I would love for
[my son] to have an easier path in life. But in
terms of what it’s done to me on the inside, I
would not change that part of it.
Thus, although most of the families described
some sacrifice that they experienced in raising
their sons, they reflected on intrinsic benefits
from these experiences.
Superordinate theme:
parent–professional partnerships
The third superordinate theme reflects parents’
partnership with professionals. It seemed that
there were different perspectives among
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mothers regarding their level of partnership with
professionals and involvement in their chil-
dren’s education and therapies. Some mothers
described taking passive role in the partnership.
One mother who was uninvolved in her son’s
therapies felt that her presence during her child’s
sessions was a distraction. A second mother said
she was minimally involved because she
received little communication or guidance from
the professionals, and did not know what to do
to help her son. A third mother remained mini-
mally involved with her child’s education
because she did not trust that the educators knew
how to teach her child. Essentially, she gave up
on the partnership: ‘… Well, the thing is that
[the school] is not really teaching him anything.
So we’re better off where I teach him myself’.
In contrast, perhaps as a response to the lack of
expertise on co-occurring deafness ASD among
professionals, some mothers felt a responsibility
to develop the parent–professional partnership
by taking the lead in helping their children’s
educators integrate these worlds. They took on
the responsibility of training the professionals
and staff who worked with their children, either
to increase their knowledge of managing the CI
and deafness or to increase their knowledge on
managing behaviours associated with ASD.
As mothers brought in their acquired exper-
tise, they expected the professionals to respect
them, communicate with them and follow
through on their suggestions. However, when
the mothers felt that the professionals were not
responding to their lead, they expressed frustra-
tion. One mother described her unsuccessful
efforts to partner with the professionals at her
son’s school:
… [The teachers of the deaf] don’t know much
about autism, so in order to support them, they
need to understand why he’s doing what he’s
doing, and techniques to help support the
behaviour, and how they can be consistent with
home and school. And it’s been difficult to get
them to coordinate that training, to have a plan
written down. And I’ve been working with the
school, having almost monthly meetings to sort of
coordinate that, and I just feel like we’re going in
the same circle over and over.
8 Journal of Health Psychology 
Although a few of the mothers expressed
satisfaction with the partnerships they had with
professionals, many expressed frustration,
regardless of whether they took a dominant or
passive role. This seemed to be connected to not
having the amount of control they felt they
needed for the partnership to be effective.
Several of the mothers, doubting the expertise
of their child’s educators and service providers,
felt that they had to become the experts them-
selves. It seemed that there was no relief from
transfer of responsibility to a knowledgeable
professional who could guide the family.
Discussion
The aim of the current study was to explore
mothers’ experiences of children diagnosed
with deafness and ASD who received a CI, and
to increase the understanding of the support
needs of these families. The overarching themes
that emerged from participants’ accounts –
Complexity, Personal and Family Sacrifices
and Parent–Professional Partnerships – reflect
the various challenges faced by mothers and
other family members.
The complexity of children’s dual disability
and the challenges in establishing reciprocal com-
munication made it hard for mothers to interpret
their children’s signals and understand their inner
world. It seems that mothers experience chal-
lenges in developing maternal insightfulness,
which can be described as the capacity to see
things from the child’s point of view and under-
stand the motives that underlie the child’s behav-
iour (Oppenheim et al., 2009). Accordingly, the
communication challenges associated with a diag-
nosis of ASD and deafness are likely to impact
mothers’ ability to have insight regarding their
child’s intentions and behaviours. In our study, if
the child lacked the ability to communicate clearly,
this appeared to hinder mothers’ construction of
their parent–child relationships, specifically with
mutuality and closeness. In a previous study that
examined maternal insightfulness among mothers
of children diagnosed with ASD, only 42 per cent
of the mothers could be classified as insightful
(Oppenheim et al., 2009).
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Mothers in our study often felt it necessary
to adopt multiple roles under the umbrella of
their parenting identity, such as acting as
teacher, therapist and case manager. According
to the mothers, taking on these multiple roles
was necessary to contend with their child’s
complex needs and accomplish their parenting
responsibilities. Similar to previous findings
from a study analysing web-based narratives of
parents of children with ASD (Fleischmann,
2005), mothers felt compelled to provide their
child with multiple interventions and stimulat-
ing activities, which in turn supported their
identity as ‘good parents’ who were trying to
help their child achieve his or her highest poten-
tial. The mothers’ accounts in our study suggest
that being a parent of a child with deafness and
ASD contributes to an on-going process of
reconstructing a sense of purpose and meaning,
which potentially informs the parent’s identity
(Nelson et al., 2014).
The complexity of the children’s condition
was linked to parents’ difficulties in various
decision-making processes. Specifically, the
mothers reported dilemmas in deciding upon a
communication mode for the child (sign lan-
guage versus spoken language), as well as edu-
cational placement. These difficult decisions
are faced by most parents raising deaf children
(Decker et al., 2012). A number of mothers
spoke of having to deal with two ‘worlds’ – the
ASD world and the deaf world, with seemingly
little cross-disciplinary sharing between them.
This lack of training on ASD and other addi-
tional disabilities among teachers of the deaf
has been documented elsewhere (Luckner and
Carter, 2001). Since there are few evidence-
based interventions for this specific group and
their unique needs, it is logical to assume that
these decisions are hard to make. Without clear
best practice guidelines for children with CIs
and ASD, parents and professionals have little
support for choosing which communication
strategies and educational intervention to use.
Thus, parents and professionals are left to their
own in making these decisions.
Interestingly, although several of the moth-
ers in our study struggled to communicate with
Zaidman-Zait and Curle 9
their children, none of them expressed any
regrets that their child received a CI. Nowadays,
CIs are a common approach to treating severe
to profound hearing loss (Semenov et al., 2012)
and are assumingly perceived by parents as a
relatively safe procedure, the best habilitation
option for their children and with generally
good outcomes (Hyde et al., 2010). This, of
course, probably would not eliminate parents’
experience of anxiety from the CI surgery itself.
Furthermore, parents’ perceptions of positive
CI outcomes of children with complex needs
are beyond communication, such as awareness
to sound for safety reasons (Zaidman-Zait et al.,
2015).
The impact of having a deaf child with ASD
introduced various sacrifices and challenges to
family life. Mothers in our study indicated that
they had to make sacrifices to meet the demands
of their child’s care. These included changing
living arrangements, careers, social life, and
meeting steep financial obligations. These sac-
rifices reflect, on one hand, parents’ investment
in promoting their children’s functioning and
development, and, on the other hand, the bur-
den and challenges in caring and adjusting to
their child’s state and needs. It seemed that fam-
ily life revolved around the child, creating dis-
ruptions to family routines and, as such, affected
not only the parents but also siblings. Previous
studies have documented challenges faced by
families of children with CI (e.g. Zaidman-Zait,
2008) and families of children with ASD (e.g.
Tehee et al., 2009) such as problems in com-
munication with their children and problems
related to obtaining support and services.
However, it seems that the uniqueness of the
dual disability exacerbates the existing chal-
lenges and introduces new ones, especially in
the context of finding specialized services for
this group of children and their families.
Mothers reported that the daily challenges
they faced influenced their well-being, as was
evident from their descriptions of experiencing
stress, isolation and, at times, hopelessness. The
negative impact of childhood disabilities on
family life has been reported in previous studies
(Trute et al., 2010). At the same time, several
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mothers described the positive impact of par-
enting their child. For example, several reported
that their family members grew closer, and that
they experienced a positive transformative
change within themselves. The positive impact
of parenting a child with disabilities has been
reported in previous studies (Corman, 2009;
Goodley and Tregaskis, 2006), supporting the
view that a child’s disability can have beneficial
effects on family life (Green, 2007). This posi-
tive outcome is linked to the notion of sacrifice
– finding a benefit to sacrifice and challenges.
Parents’ perceived positive impact can lead par-
ents to develop a deeper sense of meaning in
their lives (Grant et al., 1998) and a sense of
personal psychological growth (Scorgie and
Sobsey, 2000).
Folkman and Moskowitz (2000) suggest that
positive appraisal of parenting demands may be
particularly important in helping parents to sus-
tain caregiving efforts over long periods of
time. Findings in this study indicate that chal-
lenges or stressors can elicit both negative and
positive appraisals in the emotional lives of
mothers. These findings are in accordance with
previous claims of both positive and negative
outcomes for families of children with disabili-
ties (Trute et al., 2010). It might be that the
positive feelings are a protective factor against
negative effects on the well-being of parents.
When parents describe only negative effects,
this should be a major concern to professionals
and service providers.
Previous studies indicate that mothers vary in
terms of expectations and uncertainties in col-
laborative relationships with professionals and
roles, especially regarding the degree of respon-
sibility they are expected to take on themselves
as part of their child’s intervention programme
(Zaidman-Zait and Most, 2005; Lyons et al.,
2010). In addition, some mothers felt that they
had to learn a great deal about deafness and
ASD to compensate for the lack of knowledge
and experience with dual diagnosis among the
professionals who served their children.
According to a theoretical model describing
parent–professional partnerships (Roberts et al.,
1998), the amount of control that each
10 Journal of Health Psychology 
participant believes he or she must have for the
partnership to be effective is a critical variable.
Consistently, we found that mothers varied in
terms of degree of control that they wanted to
assume when working in partnership with the
child’s service providers. A difference between
expected level of control and actual control led
to mothers’ dissatisfaction with the relationship.
The current findings have implications for
professional practice. There is a paucity of cli-
nicians and educators with expertise in both
hearing loss and ASD. This lack of resources
hinders families’ experiences and likely impacts
children’s intervention outcomes, suggesting
the importance of implementing a multidiscipli-
nary team approach with professionals who
have expertise in ASD and those who are
knowledgeable about deafness. Nowadays, a
family-centred care approach is the gold stand-
ard model for delivering intervention services
for children with disabilities and their families.
According to family-centred care, professionals
need to establish partnership with parents and
provide support and services according to fami-
lies’ needs and priorities (Woodside et al.,
2001). For children with deafness and ASD,
family-centred care along with cross-discipli-
nary collaboration is clearly needed. At the
same time, it seems that while developing part-
nership with parents, professionals need to con-
sider parents’ differing expectations for
involvement and control, thus not imposing one
model of partnership. Service providers and
parents should discuss how active a role the
parents will play in the child’s medical treat-
ment, therapies and education. The establish-
ment of a shared understanding among parents
and professionals on what family-centred care
means is necessary for successful implementa-
tion (Jeglinsky et al., 2012). Further research is
needed to examine how service providers can
best support children and families through inte-
gration or coordination of services.
The rigorous qualitative methodology of IPA
allowed for in-depth exploration of the experi-
ences of mothers raising cochlear-implanted
deaf children with ASD. Limitations of the anal-
ysis stem primarily from the fact the participants
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involved in this study were self-selected, and
their in-depth accounts represent the experi-
ences of a small group living in North America.
Therefore, the findings may not fit universally,
in particular, regarding mothers’ experiences
related to educational placement and interven-
tion approaches that are context specific. In
addition, findings may not apply to children
with ASD who use hearing aids or who use no
amplification. Furthermore, only mothers par-
ticipated in this study. Although mothers are
usually the primary caregivers for children with
disabilities, future studies should seek to learn
about fathers’ experiences of having a child with
ASD and CI, as well as perspectives of service
providers.
Acknowledgements
The authors wish to express their gratitude to the
mothers who generously participated in this study
and shared their personal experiences. They also
thank Prof. Janet Jamieson for her constructive com-
ments and suggestions.
Declaration of conflicting interests
The author(s) declared no potential conflicts of inter-
est with respect to the research, authorship and/or
publication of this article.
Funding
The author(s) received no financial support for the
research, authorship and/or publication of this
article.
References
American Psychiatric Association (APA) (2000)
Diagnostic and Statistical Manual of Mental
Disorders (DSM-IV-TR) (4th edn). Text revi-
sion. Washington, DC: APA.
American Psychiatric Association (APA) (2013).
Diagnostic and Statistical Manual of Mental
Disorders (DSM-5) (5th edn). Arlington, VA:
American Psychiatric Publishing.
Berrettini S, Forli F, Genovese E, et al. (2008) Cochlear
implantation in deaf children with associated dis-
abilities: Challenges and outcomes. International
Journal of Audiology 47: 199–208.
Corman M (2009) The positives of caregiving:
Mothers’ experiences caregiving for a child
Zaidman-Zait and Curle 11
with Autism. Families in Society: The Journal
of Contemporary Social Services 90: 439–445.
Crnic K and Low C (2002) Everyday stresses and
parenting. In: Bornstein MH (ed.) Handbook of
Parenting. Mahwah, NJ: Lawrence Erlbaum,
pp. 243–268.
Decker KB, Vallotton CD and Johnson HA (2012)
Parents’ communication decision for children
with hearing loss: Sources of information and
influence. American Annals of the Deaf 157:
326–339.
DesJardin JL, Eisenberg LS and Hodapp RM (2006)
Sound beginnings: Supporting families of young
deaf children with cochlear implants. Infants &
Young Children 19: 179–189.
Edwards LC, Frost R and Witham F (2006)
Developmental delay and outcomes in pedi-
atric cochlear implantation: Implications for
candidacy. International Journal of Pediatric
Otorhinolaryngology 70: 1593–1600.
Fleischmann A (2005) The hero’s story and autism:
Grounded theory study of websites for parents
of children with autism. Autism 9: 299–316.
Folkman S and Moskowitz JT (2000) Positive
affect and the other side of coping. American
Psychologist 55: 647–654.
Goodley D and Tregaskis C (2006) Storying dis-
ability and impairment: Retrospective accounts
of disabled family life. Qualitative Health
Research 16: 630–646.
Grant G, Ramcharan P, McGrath M, et al. (1998)
Rewards and gratifications among family car-
egivers: Towards a refined model of caring
and coping. Journal of Intellectual Disability
Research 42: 58–71.
Green SE (2007) ‘We’re tired, not sad’: Benefits and
burdens of mothering a child with a disability.
Social Science & Medicine 64: 150–163.
Hayes SA and Watson SL (2013) The impact of
parenting stress: A meta-analysis of studies
comparing the experience of parenting stress
in parents of children with and without autism
spectrum disorder. Journal of Autism and
Developmental Disorders 43: 629–642.
Hyde M, Punch R and Komesaroff L (2010) A com-
parison of the anticipated benefits and received
outcomes of pediatric cochlear implantation:
Parental perspectives. American Annals of the
Deaf 155: 322–338.
Jeglinsky I, Autti-Rämö I and Brogren Carlberg E
(2012) Professional background and the compre-
hension of family-centredness of rehabilitation
Downloaded from hpq.sagepub.com at PENNSYLVANIA STATE UNIV on June 5, 2016
for children with cerebral palsy. Child: Care,
Health and Development 38: 70–78.
Karst JS and Van Hecke AV (2012) Parent and family
impact of autism spectrum disorders: A review
and proposed model for intervention evaluation.
Clinical Child and Family Psychology Review
15: 247–277.
Luckner JL and Carter K (2001) Essential competen-
cies for teaching students with hearing loss and
additional disabilities. American Annals of the
Deaf 146: 7–15.
Lyons R, O’Malley MP, O’Connor P, et al. (2010)
‘It’s just so lovely to hear him talking’:
Exploring the early-intervention expectations
and experiences of parents. Child Language
Teaching and Therapy 26: 61–76.
Myck-Wayne J, Robinson S and Henson E (2011)
Serving and supporting young children with a
dual diagnosis of hearing loss and autism: The
stories of four families. American Annals of the
Deaf 156: 379–390.
Nelson SK, Kushlev K and Lyubomirsky S (2014)
The pains and pleasures of parenting: When,
why, and how is parenthood associated with
more or less well-being? Psychological Bulletin
140: 846.
Oppenheim D, Koren-Karie N, Dolev S, et al. (2009)
Maternal insightfulness and resolution of the
diagnosis are associated with secure attachment
in preschoolers with autism spectrum disorders.
Child Development 80: 519–527.
Roberts RN, Rule S and Innocenti MS (1998)
Strengthening the Family-Professional Partnership
in Services for Young Children. Baltimore, MD:
Paul H Brookes Publishing.
Scorgie K and Sobsey D (2000) Transformational
outcomes associated with parenting children
who have disabilities. Mental Retardation 38:
195–206.
Semenov YR, Martinez-Monedero R and Niparko
JK (2012) Cochlear implants. Otolaryngologic
Clinics of North America 45: 959–981.
Smith JA, Flowers P and Larkin M (2009)
Interpretative Phenomenological Analysis:
Theory, Method and Research. London: SAGE.
Smith JA and Shinebourne P (2012) Interpretative phe-
nomenological analysis. In: Cooper H, Camic PM,
Long DL, et al. (eds) APA handbook of research
methods in psychology, Vol 2: Research designs:
Quantitative, qualitative, neuropsychological, and
biological. Washington: American Psychological
Association, pp. 73–82.
12 Journal of Health Psychology 
Spencer P and Marschark M (2003) Cochlear
implants: Issues and implications. In:
Marschark M and Spencer PE (eds) Oxford
Handbook of Deaf Studies, Language, and
Education. New York: Oxford University
Press, pp. 434–448.
Szymanski CA, Brice PJ, Lam KH, et al. (2012)
Deaf children with autism spectrum disor-
ders. Journal of Autism and Developmental
Disorders 42: 2027–2037.
Tehee E, Honan R and Hevey D (2009) Factors
contributing to stress in parents of individuals
with autistic spectrum disorders. Journal of
Applied Research in Intellectual Disabilities
22: 34–42.
Trier-Bieniek A (2012) Framing the telephone inter-
view as a participant-centred tool for qualita-
tive research: A methodological discussion.
Qualitative Research 12: 630–644.
Trute B, Benzies KM, Worthington C, et al. (2010)
Accentuate the positive to mitigate the nega-
tive: Mother psychological coping resources
and family adjustment in childhood disabil-
ity. Journal of Intellectual and Developmental
Disability 35: 36–43.
Wakil N, Fitzpatrick EM, Olds J, et al. (2014) Long-
term outcome after cochlear implantation in chil-
dren with additional developmental disabilities.
International Journal of Audiology 53: 587–594.
Downloaded from hpq.sagepub.com at PENNSYLVANIA STATE UNIV on June 5, 2016
Wiley S, Gustafson S and Rozniak J (2014) Needs of
parents of children who are deaf/hard of hearing
with autism spectrum disorder. Journal of Deaf
Studies and Deaf Education 19: 40–49.
Woodside JM, Rosenbaum PL, King SM, et al.
(2001) Family-centered service: Developing
and validating a self-assessment tool for pedi-
atric service providers. Children’s Health Care
30: 237–252.
Yardley L (2000) Dilemmas in qualitative health
research. Psychology and Health 15: 215–228.
Youm H, Moon IJ, Kim EY, et al. (2012) The audi-
tory and speech performance of children with
intellectual disability after cochlear implanta-
tion. Acta Oto-Laryngologica 133: 59–69.
Zaidman-Zait A (2008) Everyday problems and
stress faced by parents of children with coch-
lear implants. Rehabilitation Psychology 53(2):
139–152.
Zaidman-Zait A and Most T (2005) Cochlear
implants in children with hearing loss: Maternal
expectations and impact on the family. Volta
Review 105: 129–150.
Zaidman-Zait A, Curle D and Jamieson J, et al. (2015)
Cochlear implantation among deaf children
with additional disabilities: Parental perceptions
of benefits, challenges, and service provision.
Journal of Deaf Studies and Deaf Education
20(1): 41–50.