YJPDN-03294; No of Pages 10

Journal of Pediatric Nursing xxx (xxxx) xxx

Contents lists available at ScienceDirect

Journal of Pediatric Nursing

journal homepage: www.pediatricnursing.org

Early intervention service needs of mothers with a child diagnosed

with autism spectrum disorder in Turkey: A qualitative study
A. Elif Işık-Uslu, PhD a,⁎, Zeynep Çetin, PhD b
a
Research assistant, Department of Child Development, Faculty of Health Sciences, Hacettepe University, Turkey
b
Professor, Department of Child Development, Faculty of Health Sciences, Hacettepe University, Turkey

a r t i c l e i n f o a b s t r a c t

Article history: Background: Early intervention services play a crucial role in the prevention and management of Autism
Received 29 August 2023 Spectrum Disorder (ASD). With the increasing prevalence of ASD, understanding the specific needs of mothers
Revised 6 January 2024 and their children is essential for the development of effective interventions and support systems.
Accepted 6 January 2024 Methods: This interview study examines the early intervention service needs of Turkish mothers with children
Available online xxxx
aged 2–6 who have been diagnosed with ASD. Semi-structured in-depth interviews were conducted with nine
mothers. Thematic analysis was carried out following the guidance and six steps procedures described by
Keywords:
Early intervention
Braun and Clarke.
Early intervention service needs Findings: The study's findings reveal six distinct themes that encompass the needs expressed by the participating
Autism spectrum disorder mothers: 1) psychological support needs, 2) social support needs, 3) financial support needs, 4) strengthening
Interview study the family, 5) government-based enhancement, and 6) the need for social awareness.
Discussion: The findings underscore the significance of comprehensive early intervention services tailored to ad-
dress the needs of mothers. The stressors associated with the impact of ASD on families are highlighted, aligning
with Guralnick's framework. The findings emphasize the need for holistic intervention programs and stress the
importance of collaborative relationships among parents, educators, and service providers.
Application to practice: The practical implications of this study benefit healthcare professionals, policymakers, ed-
ucators, and stakeholders. The emphasis lies in aligning interventions with the ASD needs of both mothers and
children, ultimately aiding in the development of effective policies and the enhancement of the quality of care
for individuals with ASD in Turkey.
© 2024 Elsevier Inc. All rights reserved.

Background
ASD is the most prevalent developmental disorder, with the fastest
increasing prevalence (Baio, 2014; Christensen et al., 2019). Studies on
the prevalence of ASD reveal that its incidence is increasing daily. Global
prevalence is estimated to be 0.5–1% (Baxter et al., 2015). In 2021, the
Centers for Disease Control and Prevention (CDC) reported that approx-
imately 1 in 44 children in the U.S. is diagnosed with ASD, according to
2018 data. Most children were still diagnosed after age 4, though autism
can be reliably diagnosed as early as 2. An epidemiological study con-
ducted in Turkey in 2007 states that autism is approximately 12 out of
10,000 (Namal et al., 2007). However, no more recent frequency data
are available (Demirkaya, 2019).
⁎ Corresponding author at: Hacettepe University, Faculty of Health Sciences,
Department of Child Development, Zip Code: 06230 Ankara, Turkey.
E-mail address: a.elifisik@gmail.com (A.E. Işık-Uslu).
Early intervention services (EIS) play a crucial role in preventing and
addressing the challenges posed by ASD. In the absence of an early
intervention, primary deficiencies of autism tend to increase in time
and negatively affect children's educational and social developmental
outcomes (National Research Council, 2001). The perspective of early
intervention studies has shifted from a child-centered approach to a
family-centered one in the 1980s (Bruder, 2000; Dunst, 2009; Dunst
et al., 2001; Guralnick, 2008). Families are now recognized as playing
a central role in supporting their children's development, determining
their children's and their own needs (Mahoney & Bella, 1998), and
being the most critical elements that support the development of chil-
dren (Dunst et al., 2001), playing an essential part in a child's life
(Hadders-Algra, 2011). In addition, raising a child with ASD introduces
several challenges that families must navigate in their lives, including
family stress, change in daily routines, a shift toward a child-centered
lifestyle, social isolation, and the need to adapt to a new way of life
(Downes et al., 2020; Ludlow et al., 2012; Shattnawi et al., 2021). Par-
ents find themselves compelled to make specific adjustments, such as

https://doi.org/10.1016/j.pedn.2024.01.007
0882-5963/© 2024 Elsevier Inc. All rights reserved.

Please cite this article as: A.E. Işık-Uslu and Z. Çetin, Early intervention service needs of mothers with a child diagnosed with autism spectrum
disorder in ..., Journal of Pediatric Nursing, https://doi.org/10.1016/j.pedn.2024.01.007
A.E. Işık-Uslu and Z. Çetin
reorganizing their daily routines, reassessing priorities, and revising life
plans (Ilias et al., 2019); consequently, they undergo changes in their
habits and perspectives on life (Roquette Viana et al., 2021). Ideally,
EIS should encompass a thorough assessment of both the child's and
the family's strengths and needs (Bayhan & Sipal, 2011). Guralnick's
Developmental System Model-DSM (Guralnick, 2001) sees the family
as a mechanism that affects the social and cognitive competence of
the child (Bruder & Guralnick, 2012), and this model provides a signifi-
cant framework for comprehending the impact of family dynamics on
child development.
Guralnick's Developmental System Model-DSM (Guralnick, 2001)
aims to optimize family interactional patterns by identifying existing
sources of stress within families who have children with special needs.
Parents achieve this by: 1) enhancing their parenting skills, 2) improv-
ing their capacity to interact effectively with their children, 3) managing
their interactions within the community, and 4) ensuring the health and
safety of their children are adequately protected (Guralnick, 2001;
Guralnick, 1997).
Given the central role that families play in EIS, it is essential to focus
on their experiences and needs during the development of these
services. Previous studies indicate that having a child with autism dis-
rupts the conventional parenting process (Fernańdez-Alcántara et al.,
2016) and leads to the development of the concept of “coparenting
(Downes et al., 2020). Raising a child with autism is perceived as a
more challenging and complex process (Hayes & Watson, 2013) that
requires dynamic parenting (Roquette Viana et al., 2021). Parents of
children with autism are reported to experience higher levels of stress
(Enea & Rusu, 2020; Limbers et al., 2020) and symptoms of depression
compared to those raising typically developing children and other
special needs groups (AlTourah et al., 2020; Cohrs & Leslie, 2017). Addi-
tionally, the literature indicates that their levels of well-being (Costa
et al., 2017; Salomone et al., 2018) and self-efficacy are lower (Jackson
et al., 2022), making them more susceptible to psychiatric problems
(Cohrs & Leslie, 2017; Schnabel et al., 2020). These experiences
highlight the psychological support needs of parents. Studies emphasize
that these parents are actively seeking psychological help or are already
receiving psychological support (Aguiar & Pondé, 2020; Roquette Viana
et al., 2021).
Furtheremore, studies suggest that parents seek support not only in
one but also in the area of social support. Previous studies indicate that
mothers benefit from social support received from their families and
close friends (Downes et al., 2020). On the other hand, mothers provide
support to other mothers in similar situations and share experiences
with each other (Drumm, 2019; Rabba et al., 2019). Drumm (2019), in
her study, conceptualized the interactions among mothers of autistic
children as “ valuing connections with others who ‘get it.” The literature
highlights that mothers fulfill their social support needs by both receiv-
ing support from their immediate circles and providing support to those
facing similar circumstances.
Another area of parental needs involves obtaining information about
the diagnosis and subsequent processes. Studies emphasize that
mothers, following the diagnosis, experience a sense of uncertainty
(Drumm, 2019) and harbor concerns about the future (Acharya &
Sharma, 2021; Ilias et al., 2019; Roquette Viana et al., 2021). Research
suggests that obtaining clear and personalized information from
professionals aids parents in comprehending the diagnosis (O'Connor
et al., 2021).
Studies on family needs in the context of EIS in Turkey is particularly
important because there is currently no comprehensive nationwide
assessment process or systematic model for providing EIS (Diken
et al., 2012). To the best of our knowledge, there has been no research
conducted on the early intervention service needs of Turkish parents
with children diagnosed with ASD in a comprehensive framework.
Existing studies have primarily focused on parents' experiences and
needs within specific areas such as psychological, social, and
educational support (Bilgin & Kucuk, 2010; Güleç-Aslan et al., 2021;
2
Journal of Pediatric Nursing xxx (xxxx) xxx
Güleç-Aslan et al., 2021; Koydemir & Tosun, 2009; Özkubat et al.,
2014; Selimoğlu et al., 2013; Topan et al., 2019; Topan et al., 2019;
Yüzbaşı, 2019).
This study
Since there is a lack of research on early intervention service needs
among Turkish mothers with children diagnosed with ASD, our aim is
to explore the following research question:
• What are the early intervention service needs of mothers with a child
diagnosed with ASD?
This study will contribute to the literature by revealing the specific
needs of Turkish mothers in terms of both individual and
government-based services within the early intervention processes for
autism. Additionally, it is essential in contributing to the development
of an early intervention system specific to Turkey. By investigating the
unique needs and challenges faced by Turkish mothers raising children
with ASD, this study offers valuable insights that can improve the care
provided by pediatric nurses. Consequently, these findings have the
potential to guide healthcare professionals, including child develop-
ment specialists, in the development of more effective family-centered
interventions.
Methods
Study design
This study explored mothers' experiences regarding EIS from the
time of diagnosis to the present. In our study, we followed the
reporting guidelines of “ Standards for Reporting Qualitative
Research-SRQR” (O'Brien et al., 2014) and “Consolidated Criteria for
Reporting Qualitative Research-COREQ) “ (Tong et al., 2007). We
conducted in-depth interviews with mothers between January and
February 2020, using a semi-structured interview schedule. Our
research adhered to a constructivist paradigm, which emphasizes
that individuals reveal their realities and understanding through re-
search in an inductive manner. Researchers reflect their values and
biases within the constructivist paradigm (Lincoln et al., 2011). Con-
sequently, we believed that these constructivist paradigm features
would benefit our study.
Sampling and participants
We employed typical case sampling as one of the purposive
sampling methods. According to Patton (2002), all sampling methods
in qualitative research designs are purposive; hence, purposive
sampling is the main heading, with typical case sampling as a sub-
heading. In this type of sampling, researchers gather data from partici-
pants who exhibit typical characteristics related to the research topic.
The participants in this study were exclusively selected from mothers
with a child diagnosed with ASD. We focused on mothers as primary
caregivers, considering their more active role than fathers in the diagno-
sis and special education processes of children, as well as their greater
involvement in their children's education and healthcare services.
Inclusion criteria were that the mothers 1) were voluntary participants,
2) were married, 3) had a child diagnosed with ASD, and the children
were 1) diagnosed with only ASD with no additional diagnosis,
2) aged 2–6 years.
Recruiting participants
Participants were reached through announcements made in private
education institutions located in Ankara and via social media. We
A.E. Işık-Uslu and Z. Çetin
conducted interviews with participants over the phone. The length of
the interviews varied between 60 and 90 min.
Developing interview schedule
The semi-structured interview schedule was developed based on a
review of the relevant literature regarding mothers' needs and the clin-
ical experiences of the researchers. Additionally, expert opinions were
sought from three researchers with expertise in early intervention and
qualitative research who were not part of the author team. After
reaching a consensus on each item, the final version of the schedule
was established. The interview schedule consisted of eighteen ques-
tions, categorized into four sections: questions related to demographic
information, questions about the mothers' experiences (e.g., “Can you
describe your child's diagnosis process?”), questions about the services
they were currently receiving (e.g., “What are your thoughts on the spe-
cial education services your child is currently receiving?”), and questions
about the services they desired to access (e.g., “Which services would
you like to receive for yourself and your child?”). To gain deeper insights
into their experiences, exploratory questions were also included
(e.g., “How did you feel during the challenges in the diagnosis process?”).
The use of vague, directive, and closed-ended questions was avoided.
Validity-reliability
Validity and reliability in qualitative research are concerned with
demonstrating the accuracy of explanations and credibility (Creswell,
2015; Creswell & Miller, 2000). Creswell and Miller (2000) delineated
validity and reliability procedures under nine categories. According to
Creswell (2015), to meet the validity and reliability criteria in qualita-
tive research, at least two of these procedures must be satisfied. In our
study, we employed researcher reflexivity and peer debriefing as valid-
ity and reliability procedures.
Researcher reflexivity
Reflexivity involves the researcher disclosing their experiences,
roles, perspectives, and biases and how these may influence the inter-
pretation of data (Palaganas et al., 2017). During the period when the
study was conducted, the first author was a doctoral student in the
Department of Child Development at the Faculty of Health Sciences,
Hacettepe University, engaged in clinical studies with children diag-
nosed with autism and their families in the “Communication and Lan-
guage Unit.” Her interactions with parents of autistic children,
particularly those expressing concerns about insufficient EIS, shaped
her perspective in this study. The second author, also affiliated with
the same institution, held the position of associate professor and
conducted clinical studies in the “Early Intervention Unit.”
Data analysis
The first author conducted the data analysis process. Thematic anal-
ysis was carried out following the guidance and six steps procedures
described by Braun and Clarke (2006). In the first step, interviews
were transcribed verbatim and uploaded into MAXQDA (version
20.4.1). The transcripts were read several times to gain familiarity
with the data. During this step, initial ideas regarding coding were doc-
umented. Open coding was carried out in the second and third steps
(Strauss, & ve Corbin, J., 1998). All transcriptions were encoded line by
line, and initial code labels were assigned. These initial codes were
then collated into emergent themes and sub-themes. The fourth step
consisted of reviewing and refining the themes. Initially, candidate
themes were reviewed for coherence, allowing for the elimination,
combination, or separation of themes and the creation of new ones.
After ensuring that all candidate themes aligned with the coded data,
the refinement stage was initiated. This process was carried out for
3
Journal of Pediatric Nursing xxx (xxxx) xxx
the entire dataset, and a final review of all the data was conducted to
confirm that the thematic map was consistent throughout. In the fifth
step, themes were clearly defined and given appropriate names. A the-
matic map, illustrating the relationships between and within themes
and sub-themes, was developed using MAXQDA. In the final step,
which included producing the report, a final analysis was conducted
and the story of the sub-themes and themes was written up.
Peer debriefing
We received expert opinions from three researchers who specialize
in early intervention and conduct qualitative research, but are not
affiliated with this study. These researchers reviewed and discussed
the interview schedule. After achieving consensus on each item, the
data analysis procedure was performed by the first author. Subse-
quently, all themes and subthemes were further reviewed by another
researcher who is knowledgeable about the subject of the study and
has experience in qualitative research but is not affiliated with this pro-
ject. This external researcher contributed to the study by assessing the
research's impartiality and reviewing the study's focus. This procedure
also enhances the reliability of the study (Lincoln & Guba, 1985;
Silverman, 2005).
Ethical considerations
Ethical approval was obtained from the “Hacettepe University
Health Sciences Research Ethics Committee”. Participants completed in-
formed consent forms and the information provided in the forms was
reiterated verbally before the interviews. Participants were informed
that their participation in the study was voluntary, their information
would be kept confidential, they had the option to end the interview
at any time, and the interviews were recorded. No incentive payments
were provided to any participant.
Findings
The first author conducted semi-structured in-depth interviews
with nine mothers. They were aged 31–43 years and all mothers were
housewives. Their education levels were high school, junior college
and college. The number of children that the mothers had ranged
from 1 to 4. The diagnosis age of their children ranged between 21
and 40 months. The children had no neuro-developmental diagnosis
other than autism and were aged 30–54 months. The characteristics of
mothers are presented in Table 1. The sample size was determined by
data saturation and representativeness. Data collection continued until
new data no longer influenced the identified themes (Guest et al.,
2006). And ultimately, 9 participants were recruited.
We identified six themes to describe the early intervention service
needs of mothers: 1) psychological support needs, 2) social support
needs, 3) financial support needs, 4) strengthening the family,
5) government-based enhancement, 6) the need for social awareness
(Fig. 1.). Each theme and corresponding subthemes are described
below in more detail. Quotations from mothers are provided in italics.
The identifiers such as M1–2 at the end of the quotations indicate the re-
spective participants, while ‘Pos.’ denotes the location of the quotation
in the MAXQDA. When we combine these themes, they reveal that
mothers have comprehensive service needs encompassing health, edu-
cation, psychological wellbeing, social support, and financial aspects.
These service needs encompass both individual requirements (such as
therapy) and systemic necessities related to healthcare and education.
Theme 1: Psychological support needs
Mothers shared their experiences, which unveiled their psychologi-
cal service requirements. They encountered various emotional
challenges before and during the diagnosis process, and these emotions
A.E. Işık-Uslu and Z. Çetin Journal of Pediatric Nursing xxx (xxxx) xxx

Table 1
Socio- Demographic Features of Mothers and Children.

Mother Child

Age Working Educational level Number of children City Gender Current age Diagnosis age

M1 43 Housewife Junior college 3 İstanbul Boy 42 months 30 months

M2 32 Housewife College 1 Diyarbakır Boy 48 months 40 months
M3 35 Housewife Junior college 3 İstanbul Boy 30 months 26 months
M4 36 Housewife High school 2 Ankara Boy 66 months 36 months
M5 34 Housewife College 1 İstanbul Boy 48 months 28 months
M6 35 Housewife High school 3 Ankara Boy 54 months 42 months
M7 33 Housewife High school 2 Ankara Boy 48 months 21 months
M8 33 Housewife College 1 Ankara Boy 42 months 30 months
M9 34 Housewife Junior college 1 Ankara Boy 36 months 22 months

persist. This theme underscores the necessity of providing mothers with
psychological support, given the uncertainty surrounding the diagnosis
process and the unpredictability of the future. Therefore, psychological
support for mothers should encompass both information-sharing and
counseling. The subthemes within this theme encompass: 1) informing
about emotional processes, 2) informing about the diagnosis, 3) infor-
ming about potential changes, 4) psychological counseling/therapy.
Informing about emotional processes
When their children were first diagnosed, mothers admitted that
they experienced some emotional reactions such as shock, denial,
self-blame, extreme sadness, and crying: “At first, you know, you don't ac-
cept it, but then I tricked myself into thinking I accepted. I, then came to the
realization that I couldn't accept this. That was really tough for me. After
then came self-blame, sobbing, and denial. As a result, it became quite chal-
lenging.” (M6,Pos.236). Mothers said that as the procedure advanced,
they felt “depression, exhaustion, and anxiety of having a kid again,”
and some said they eventually came to terms with the diagnosis. One
of the mothers who reached the acceptance stage expressed the
following: “As you research and read, you progressively accept the circum-
stance. There is a process that you complete in 6-7 months” (M2, Pos.30).
Informing about the diagnosis
Mothers expressed concerns about the future impact of autism on
their children, with one mother sharing her thoughts: “Whenever I think
about something, I think of him first. Even in saving or investment. Will he re-
quire different things in the future? A lot has changed. There is a common
saying; I hope my child will be healthy. He will save himself if he studies.
That's what the old people say. Thank goodness. But since we have a health
problem, I can't say thank goodness he will be able to save himself.”(M4,
Pos. 131). They emphasized that their child's diagnosis marked their ini-
tial encounter with autism, leading to a strong need for information
about the diagnosis and what to expect next. They suggested that such in-
formation should be delivered both orally and through the provision of
written materials, as one mother explained: “After this diagnosis, the fam-
ilies are all by themselves. You are left in the dark and by yourself. You're
caught in the middle because your child has been diagnosed. There may be
training and prepared books to support the process after the diagnosis. A

Fig. 1. Themes of Early Intervention Service Needs of Mothers.

4
A.E. Işık-Uslu and Z. Çetin
few times a year, there might be symposiums and training regarding it or rec-
ommendations from doctors. There are so many things that can be made, like
a family support center or whatever.” (M2, Pos. 121, 123).
Informing about potential changes
Mothers reported that their lives had certain modifications when
their children were diagnosed. The changes in their family life are one
of these transformations. One participant described how they now live
a child-centred existence: “In other words, aside from thinking about
what will happen, we have to change everything according to our child.
That is what sometimes makes things challenging. You have no control
over yourself. Your desires are, therefore, absolutely useless.” (M8, Pos.
60). The changes in how mothers interact with their environment are
one of the challenges they go through. It is extremely difficult for
mothers because they are terrified of the varied behaviors of the
world and struggle to make their children acceptable to them. The
participants' expressions when describing the situation are as follows:
“We didn't inform anyone about this situation since we didn't want it to
be labelled.” (M2, Pos. 36) and “No, they don't know because my social sur-
rounding isn't able to perceive it. If I say that, they will classify this child into
a very different group. I don't want anything like that.” (M1, Pos. 48).
The mothers claimed that feelings of social isolation also accompa-
nied these changes in their relationships. They stated that some people
distanced themselves from them and preferred to stay away from peo-
ple: “It's like I completely broke off all contact with everyone because I
didn't want to watch it (people's comments about the child).” (M8, Pos.
66). Mothers have other experiences in this regard; the social environ-
ment has accused them of interfering in child-related concerns, having
trouble persuading their husbands that their children have an ASD diag-
nosis, and dealing with the differences in their children.
Psychological counseling/therapy
Mothers expressed their desire for and necessity of psychological
support. Some mentioned that they had already sought such assistance
from a psychologist or psychiatrist. One mother described her perspec-
tive, saying, “The learning process is really heavy. First and foremost, I want
the parents to receive assistance following the diagnosis.” (M2, Pos. 115).
However, some mothers faced challenges in accessing this support
despite having scheduled appointments. One mother shared her experi-
ence, stating, “I received support for three months and was taking medica-
tion, but I really needed psychological support. Please type it in capital
letters right there. Free counseling for parents.” (M6, Pos. 266).
Theme 2: Social support needs
Considering that individuals are interconnected within society, the
quality of mothers' interactions with others has a profound impact on
them. Mothers often encounter both positive and negative responses
from people in their social circles. Negative reactions can sometimes
be attributed to a lack of awareness and misunderstandings about au-
tism. Consequently, these experiences contribute to the social support
needs of mothers, which are closely intertwined with the psychological
support needs highlighted in Theme 1. This theme underscores the sig-
nificance of mothers seeking acceptance from their social networks and
the need to be better understood. Therefore, offering psychological sup-
port to mothers should include fostering positive social connections and
raising awareness within society about autism. The subthemes within
this theme encompass: 1) social acceptance, 2) interaction with other
mothers of children with ASD, 3) a desire for understanding, and 4) sup-
port from friends, 5) receiving assistance with household chores and
childcare.
Social acceptance
Mothers emphasized the importance of social approval. One mother
conveyed her experience regarding this need by sharing the following
encounter: “A woman at the park told her grandchild that ‘Let us play
5
Journal of Pediatric Nursing xxx (xxxx) xxx
elsewhere.’ and took the child away as if my child had a contagious
disease…Well, he wasn't someone who could understand like that. It was
clear from his response. If I had told him, his response would have been
strange. However, instead, he arrived with a peculiar expression and
disgusted the boy so much.” (M8, Pos. 70).
Interaction with other mothers of children with ASD
Mothers expressed the need to connect with other mothers who
have children with ASD, as they believe these mothers can better
understand their situation. One mother suggested, “Organizing activities
for mothers with autistic children on specific days of the month is possible”
(M6, Pos. 276).
A desire for understanding
In line with the previously mentioned need for social acceptance,
mothers also expressed the desire to be understood: “I wish there were
people who could understand me so I could share my problems. And if
they could just offer me a little support. But there is no one like that around
me. “ (M1, Pos. 54).
Support from friends
Some of the mothers mentioned that they regularly talk to a close
friend, while others expressed their wish for a friend who could empa-
thize with them. One mother, who received emotional support from
friends, shared, “I have a friend who supports me when I am feeling
down.” (M6, Pos. 250).
Receiving assistance with household chores and childcare
Mothers claimed they required a helper to get some support with
housework and child care: “… A mother with a child with special needs
needs an assistant at home. I don't have any assistance, and, in the
meantime, my husband works very long hours. You are familiar with the
conditions in Istanbul, and considering the time it takes for my husband
to get home, I am taking care of three children all by myself until he arrives.
Feeding, drinking, cleaning, bathing, everything is entirely on me. Therefore,
having an assistant at home is a necessity, and, of course, spousal support is
very important.” (M1, Pos. 96).
Theme 3: Financial support needs
In Theme 3, which centers on financial support needs, mothers
expressed their desire for various opportunities for their children,
such as additional individualized instruction or participation in sports
activities. However, these opportunities come at a cost, and families re-
quire financial support to make them accessible to their children. This
theme sheds light on the areas where the financial burden on mothers
becomes evident. Mothers voiced their need for free sports services, a
free shuttle service to transport their children to special education cen-
ters, free additional individualized instruction, and even free therapy
services for themselves. The latter emphasizes not only their financial
but also their psychological support needs. These aspects collectively
underscore the challenges related to financial support faced by mothers
of children with ASD.
Theme 4: Strengthening the family
According to the developmental systems approach, the family is a
mechanism that influences children's social and cognitive competence
(Bruder & Guralnick, 2012). Therefore, strong and healthy families pos-
itively influence children's developmental outcomes. The experiences
shared by mothers on this theme suggest that with the support of all
family members in a nurturing family environment, mothers can effec-
tively navigate the challenges they encounter. The subthemes within
this theme include: 1) parental involvement, 2) family counseling, and
3) time management efficiency.
A.E. Işık-Uslu and Z. Çetin
Parental involvement
The sub-theme of “parental involvement” encompasses concepts
such as “parent training” and “participation in the special education
process.” Mothers expressed the need for parental training, desiring to
learn about various topics, including interaction strategies, methods
for addressing behavioral issues, ways to enhance play skills with their
children, general developmental advice, and developmental knowledge.
These training subjects comprised both the topics mothers wished to
learn and the ones they were already practicing. Mothers emphasized
the importance of monitoring their children's interactions with special
education teachers and found it to be highly effective. They highlighted
the significance of teachers providing feedback through observation of
the mother-child dyad, demonstrating how to implement expert advice
and interaction techniques. An example illustrates this: “For instance,
last week we planned to study. I responded, ‘Sir, how are we going to ac-
complish it? I brought the books. Please lead the way.’ First, the teacher
acted as a model for me, and then I performed it. He informed me of my
errors. I wrote and made notes.” (M9, Pos. 216).
Mothers also expressed the need for spousal support and empha-
sized the importance of fathers' involvement in parent education.
They found value in utilizing social media and accessing printed mate-
rials as part of parent training. One mother shared that she internalized
her notes by posting them on the refrigerator and exposing herself to
them throughout the day. Another mother mentioned that she
benefited from educational materials provided by professional and aca-
demic organizations on social media.
Additionally, “participation in the special education process” clari-
fied the extent of parental involvement. Mothers felt it was essential
for their children to review the lessons learned in special education at
home and to assign homework. They believed their children needed a
higher level of care and education. Furthermore, they expressed the
need for access to special education teachers and the ability to ask ques-
tions as needed.
Family counseling
Family counseling was essential for mothers, and they believed that
all family members should have access to psychological support: “There
should be family psychologists as well. We need a family psychologist who
can guide us and keep the family intact, whenever we are in a trouble.”
(M7, Pos. 130).
Time management efficiency
Mothers unanimously expressed the need for quality time manage-
ment. Quality time includes spending time alone with others, such as
friends, spouses, and family members:“ I can't spare time for myself. I
have always been focused on my child.” (M5, Pos. 157).
Theme 5: Government-based enhancement
Mothers shared their experiences concerning the challenges they
faced within the healthcare and education systems. They highlighted
the prolonged diagnosis process and the demand for more comprehen-
sive special education services. This theme sheds light on the essential
requirements in healthcare and education services, which form the
core of EIS provided by the government. The subthemes within this
theme include: 1) enhancement of educational services, and 2) -
enhancement of healthcare services.
Enhancement of education services
The first finding within this sub-theme highlights the significant
need for intensive special education services for children according to
the mothers. Mothers were well aware that children with ASD require
more intensive special education services, but they found that the
government-funded weekly course hours are insufficient. This finding
aligns with the concept of “free additional individualized instruction”
6
Journal of Pediatric Nursing xxx (xxxx) xxx
within the “financial support need” theme: “ Special education is very
costly, and families cannot afford it. The two course hours provided by the
government are not enough for children with special needs” (M2, Pos.
107). Mothers also emphasized that private educational institutions
for children with special needs should meet both qualitative and quan-
titative standards.
Another conclusion from this sub-theme suggests that preschool
teachers must have a good understanding of autism to effectively edu-
cate the children: “I don't want to belittle teachers, but I consider myself
better than them. It's las if they are resistant to improvement. To be honest,
they are inadequate. We know that preschool teachers should continuously
read and conduct research. They should be knowledgeable about these spe-
cial needs children, but it appears they are not.” Additionally, mothers
expressed a need for their children to be accepted by teachers and
school principals: “ Enrolling in a public school was also quite challenging
for us. We visited the school, and the school principal refused to accept us.”
(M4, Pos. 55).
Enhancement of healthcare services
Mothers expressed concerns about the slow and delayed diagnosis
process for their children, which, in turn, led to delays in receiving
special education services. They wished for a more streamlined pro-
cess where they could be monitored by the same doctor throughout
the diagnosis process. According to the mothers, the current system
prolonged the diagnosis process significantly: “We had to visit different
departments at the hospital, waiting for a month in one, and another
month in another. We spent four to five months just waiting for hospital
appointments. It took an additional month to receive the report. Cur-
rently, I am waiting for the Guidance and Research Center (GRC) report
to be issued (referring to obtaining an educational diagnosis).” (M3,
Pos. 146).
Theme 6: The need for social awareness
Mothers expressed that they had suspicions about their child being
different from other children even before an official diagnosis. However,
they often received misleading advice from others. Many individuals
reassured the mothers that everything was fine and that their child
was normal. If society were more aware of the early signs of autism or
recognized developmental delays in children, mothers might not have
been discouraged from seeking professional medical advice. This
theme underscores the critical role that society plays in aiding mothers
as they navigate the challenges of raising a child with ASD. The sub-
themes within this theme encompass: 1) early recognition of ASD
signs and 2) social awareness.
Early recognition of ASD signs
Most mothers claimed to have seen a change in their kids before
their diagnosis, but they chose not to focus on it since others misguide
them: “After that when he didn't respond to his name, I wanted to consult
a doctor. However, my extended family prevented me. Although the child
didn't speak and didn't respond to her name, they still used words like
`Don't worry, he will speak, he does it out of spite, he understands every-
thing.’“ (M8, Pos. 26). Another mother expressed the people's reactions
as follows: “His father was also a shy child. Maybe he is that kind of child
too. His uncle also wasn't interested in toys. So, I took a step back. However,
after the 23rd month, when I firmly asserted this was not normal, I
disregarded any advice.” (M5, Pos. 41).
On the other hand, some mothers came to realize that their
children's behaviors during infancy were related to autism only after
the diagnosis: “He kept coming and going in the corridor. We thought it
was a play, but it turns out that it was one of those repetitive behaviours
of autism.” (M7, Pos. 16). These findings underscore the necessity for
mothers to have access to developmental information and the impor-
tance of primary prevention in EIS.
A.E. Işık-Uslu and Z. Çetin
Social awareness
Mothers emphasized that they couldn't share their child's autism di-
agnosis with their family and close friends because they believed no one
in their social circles would understand. Their experiences ranged from
not being taken seriously to encountering overreactions or exclusion: “I
have already told them. My family members did not care much about me
and the seriousness of the matter. I was saying, aunt, my child is like this.
There was a TV show back then; remember the Good Doctor? Then I said,
‘My child is that way’. They were shocked when they heard. Thanks to
them, my husband and mother-in-law became aware of the situation.”
(M3, Pos. 74).
Discussion
In this article, we have presented the early intervention service
needs of Turkish mothers with a child diagnosed with ASD between
the ages of 2–6 in the diagnosis and post-diagnosis process using an
in-depth inductive qualitative approach. Results indicate that mothers'
service needs encompass psychological, social, and financial support;
strengthening the family; increasing social awareness; and enhancing
education and health services. Furthermore, these results highlight
that early intervention service needs are fundamentally structured
around education, health, psychological, social and financial dimensions
and should be addressed at both individually and systemic levels.
When discussing the findings in the context of (Guralnick, 2001)
DSM, it becomes evident that having an autistic child impacts every
family member. The diagnosis of a child with ASD brings about changes
in families' psychological, social, and financial lives. All these changes
give rise to individual and systemic needs for EIS in these areas. The con-
cept of “stressors” emphasized by Guralnick includes these criteria, and
given the interconnectedness of stressors, a child's developmental out-
comes, and family interaction patterns, it is crucial to organize these
elements within a developmental framework. Early intervention pro-
grams designed to alleviate parental stress should be tailored to address
the specific needs of parents. As a result, improving parental access to
EIS will contribute to enhanced outcomes in early intervention.
According to the findings from the research, it appears that mothers
are in need of psychological support. From a DSM perspective, family re-
sources, including mental health, influence family patterns of interac-
tion, which, in turn, impact children's developmental outcomes
(Guralnick, 2011, 2020). Therefore, addressing the psychological
support needs of parents is crucial in EIS. The psychological support
needs of mothers may be attributed to the emotional processes they un-
dergo during the diagnosis and special education phases. Emotional
processes, such as experiencing shock, denial, and anger, can exemplify
these reactions (Ooi et al., 2016). Previous studies have demonstrated
that parents have expressed a shift in their daily family life, where
their focus centers around autism, and they have felt that nothing will
ever be the same as before (Ludlow et al., 2012; Werner, 2001). Stress
factors emerge as a result of the significant changes in families' lives
brought about by autism. Earlier research indicates that factors such as
parents' limited knowledge about autism, behavioral issues stemming
from autism, uncertainty in managing these behavioral problems, and
concerns about their children's future contribute to stress within fami-
lies (Hall & Graff, 2010; Ludlow et al., 2012; Ooi et al., 2016). These
stressors can be seen as reactions to the uncertainty surrounding au-
tism. Some studies have indicated that parents' need for emotional sup-
port is rooted in their lack of knowledge. Parents who receive clear and
understandable information about ASD tend to receive the necessary
support (Hall & Graff, 2010). Furthermore, certain studies have shown
that information overload occurs after the diagnosis, making it challeng-
ing for parents to comprehend all the provided information. This is why
written information is often deemed more beneficial (Ooi et al., 2016).
The literature emphasizes that parents of children with ASD
experience higher levels of stress and depression compared to parents
of typically developing children or children with other disabilities/
7
Journal of Pediatric Nursing xxx (xxxx) xxx
chronic diseases (Hayes & Watson, 2013; Schieve et al., 2007). Some
studies have demonstrated that psychological counseling programs
provided to these parents can reduce their depression levels, enhance
their problem-solving skills, and offer emotional support (Yüksel &
Eren, 2007). When considering the research findings in conjunction
with existing literature, it becomes evident that providing continuous
psychological support to parents in early intervention programs for
ASD is essential, rather than offering support as a one-time event.
Parents' social support needs might arise from their desire for social
interaction and understanding. The findings related to the social sup-
port need reveal that parents require social acceptance, understanding,
and opportunities to connect with other mothers who have children
with ASD. The need for social acceptance among parents may be driven
by society's negative attitudes toward individuals with special needs, as
well as a lack of knowledge and awareness about these needs. People
from the broader community often react negatively to children with
ASD and their families, and the children may display challenging behav-
iors like tantrums in response to difficult situations (Ludlow et al., 2012;
Woodgate et al., 2008). Furthermore, low social acceptance can result in
issues such as stigma and social isolation among parents (Hall & Graff,
2010; Ooi et al., 2016; Woodgate et al., 2008). A study by Ludlow et al.
(2012) found that parents often find it more challenging to deal with
society's negative reactions than with their child's tantrums. These
societal reactions serve as an additional burden alongside the challenges
posed by ASD, highlighting the importance of including social aware-
ness initiatives within the scope of EIS.
According to another finding, parents fulfill their need for under-
standing either by socializing with close friends or by connecting with
other mothers who have children with ASD. Prior studies have shown
that when parents engage with other parents, share information, and
receive emotional support, they experience a sense of not being alone
and feel better (Derguy et al., 2015; Ludlow et al., 2012; Ooi et al.,
2016). The need for social acceptance, as expressed in this theme, aligns
with the need for social awareness, which is discussed in another
theme. The influence of society can be both positive and negative.
Furthermore, considering that the primary aim of foundational early in-
tervention studies is to prevent the emergence of developmental disor-
ders, it becomes evident that raising awareness is an integral aspect of
these studies. Social awareness pertains to recognizing the early signs
of autism and increasing societal awareness. If society becomes
well-informed about autism, its causes, early symptoms, and behavioral
issues associated with autism, social acceptance will naturally follow.
Since social awareness is currently lacking, mothers face the dual chal-
lenge of coping with the difficulties of autism and having to educate
those around them. Mothers sometimes hear statements such as “This
child has nothing”, and they may not find their relatives supportive
enough (Ludlow et al., 2012). This situation slows down the recognition
of early autism symptoms and the process of seeking professional help,
ultimately delaying the diagnosis and education process. Parents who
delay seeking assistance from a specialist also endure a protracted pro-
cess, which only exacerbates the situation. In addition to the prolonged
diagnostic process, encountering multiple doctors and not receiving
adequate information are further difficulties experienced by families.
Collectively, the study underscores the need for improvements in
healthcare services.
Just as in previous studies (Derguy et al., 2015; Hall & Graff, 2010),
our findings underscore the financial support needs of mothers.
Mothers' financial support needs are driven by several factors. Firstly,
they seek to provide additional special education support for their
children. The mothers perceive the number of free special education
sessions provided by the government as insufficient, and they believe
their children require additional services such as occupational therapy
and language therapy. This finding is further supported by the need
for improved education services, emphasizing the necessity for
additional support. Another contributing factor is the limited availabil-
ity of free sports activities for children with ASD. Although some
A.E. Işık-Uslu and Z. Çetin
municipalities offer such activities, access to these services for children
with ASD is limited. Additionally, mothers express a need for therapy
services for their families. However, such services often come with asso-
ciated financial costs, and free services provided by municipalities are
not yet widely available. Providing these services to parents would not
only fulfill their financial support needs but also enhance their
self-efficacy and contribute to the overall strength and well-being of
the family unit.
Another factor that will strengthen families is ensuring that parents
take a more active role in the development of their children. According
to the findings, this will be possible through mothers' receiving parental
education and involvement in their children's special education pro-
cesses. From a family-oriented early intervention perspective, parents
have central role in supporting their children's development and are
key figures in their children's lives (Hadders-Algra, 2011; Mahoney &
Bella, 1998). In the literature, early intervention programs that involve
parents are recognized as vital in supporting the development of
children at risk of ASD (Patterson et al., 2012; Steiner et al., 2012;
Wallace & Rogers, 2010). Studies also indicate a decrease in the stress
levels of parents who actively participate as co-therapists (Safe et al.,
2012). Being involved in the special education processes of their chil-
dren provides parents with a sense of control (Ooi et al., 2016).
While the need for mothers to be involved in the process is under-
standable even for mothers with children of typical development, it is
particularly significant for mothers with children diagnosed with ASD
due to their children's developmental delays and challenging behaviors.
According to Hall and Graff (2010), parental education is a key compo-
nent of EIS provided to parents in this context. Prior studies have shown
that parents of children with ASD face various challenges, including
effective communication with their children, difficulties in social inter-
action, and managing daily life skills (Papageorgiou & Kalyva, 2010;
Pejovic-Milovancevic et al., 2018). Some parents may also express con-
cerns regarding their children's unusual behaviors (Siklos & Kerns,
2006). Additionally, parents require training in behavior management,
promoting independence in their child, enhancing social communica-
tion skills, and managing relationships among siblings (Derguy et al.,
2015). Some studies involving Turkish mothers have shown that
parents of children with ASD may have lower sensitivity toward their
children, displaying less emotional expressiveness and responsiveness
in their interactions with their children. These studies also indicate
that they use more success-oriented and directive interaction styles at
a higher frequency (Oğuz & Sönmez, 2018; Töret et al., 2015). These
findings underscore the importance of organizing parental education
programs for mothers in Turkey.
When considering the research findings in conjuction with the
existing literature, it becomes evident how crucial it is to incorporate
parents into early intervention programs for ASD in Turkey. The impor-
tance of trained experts (Derguy et al., 2015) and the significance of
building strong relationships with service providers (Pejovic-
Milovancevic et al., 2018) have been emphasized in the existing litera-
ture. Involving parents in EIS and providing them with additional finan-
cial support aligns with the identified need for enhancing educational
services. Mothers seek improvements in educational services by
enhancing the competencies of preschool teachers in dealing with chil-
dren with ASD and by raising awareness among teachers and school
principals. These efforts stem from the negative experiences parents
have encountered with teachers and school principals. Fostering posi-
tive relationships between parents and all individuals involved in the
child's educational journey will enhance the overall benefits children
receive from EIS.
Research implications
Our findings provide valuable insights into the needs of Turkish
mothers for EIS based on their experiences. These research results are
8
Journal of Pediatric Nursing xxx (xxxx) xxx
crucial for informing the development and implementation of early in-
tervention policies for ASD in Turkey. Furthermore, to the best of the au-
thors' knowledge, no previous research has comprehensively
investigated the early intervention service needs of Turkish parents
with children diagnosed with ASD.
Limitations
This study has certain limitations. Firstly, it exclusively involved
mothers as participants. Secondly, the data collection process was re-
stricted to telephone interviews, primarily due to the prevailing pan-
demic conditions. As a result, it is advisable for future research on this
subject to encompass a broader spectrum of stakeholders, including fa-
thers, teachers, and policymakers who play pivotal roles in the early in-
tervention service process.
Conclusion
This qualitative study, provides insights into the essential needs
and challenges that Turkish mothers face in relation to EIS for their
children diagnosed with ASD. Drawing from the experiences of these
mothers, our findings underscore the significance of tailored and
family-centered EIS strategies to address the unique requirements of
children with ASD and their families. The insights gained from this re-
search contribute significantly to the existing knowledge base regard-
ing EIS, emphasizing the pivotal role of early interventions in
supporting parents and enhancing the developmental outcomes of
children with ASD.
The study's exploration of maternal perspectives provides valuable
insights for healthcare professionals, policymakers, and educators en-
gaged in the provision of EIS. Furthermore, the identification of gaps
and needs highlighted in this research lays the groundwork for future
research endeavors. Given the limitations of this study, it is recom-
mended that future research should encompass a broader range of
stakeholders, including fathers, teachers, and policymakers, to gain a
comprehensive understanding of the holistic EIS process. These steps
are pivotal in guiding the development of more effective and compre-
hensive early intervention policies and practices within the context of
ASD in Turkey.
Funding statement
The authors did not receive support from any organisation for the
submitted work.
Author's contributions
All authors participated in the following aspects of the study:
1) study conception and design, 2) participant recruitment, 3) develop-
ment of the semi-structured interview schedule, and 4) review and ap-
proval of the final manuscript. Additionally, the first author conducted
the semi-structured in-depth interviews and carried out data analysis,
while the second author focused on reviewing and editing the manu-
script.
Declaration of generative AI and AI-assisted technologies in the
writing process
While composing this work, the authors used ChatGPT by OpenAI in
order to improve the readability and use of existing language. It is cru-
cial to emphasize that ChatGPT was solely employed to enhance the
quality of the writing and facilitate better communication of ideas, and
not to generate new content. Following the application of this tool, the
authors reviewed and edited the content as needed and takes full re-
sponsibility for the content of the publication.
A.E. Işık-Uslu and Z. Çetin
CRediT authorship contribution statement
A. Elif Işık Uslu: Writing – original draft, Formal analysis, Data
curation, Conceptualization. Zeynep Çetin: Writing – review & editing,
Validation, Conceptualization.
Declaration of competing interest
The authors declared no potential conflicts of interest concerning
this article's research, authorship, and/or publication.
Acknowledgments
We would like to express our sincere gratitude to each of the
mothers who participated in this research and to private education in-
stitutions for their assistance in reaching out to these mothers.
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