Mothers’ Experiences in Accessing Early Intervention Services for Children with Developmental Disabilities

Abstract

Children with developmental disabilities (DD) require early and coordinated services, yet parents often face obstacles in accessing adequate support. This study examined parents’ experiences with early intervention in Serbia to identify barriers, supports, and context-specific challenges. Semistructured interviews were conducted with 15 parents of children aged ≤ 6 years. Interviews (30–50 min) were audio-recorded, transcribed verbatim, and thematically analyzed in line with the Consolidated Criteria for Reporting Qualitative Studies. Seven themes emerged: recognition of concerns, first steps in seeking help, complexity of procedures, information gaps, emotional and practical challenges, collaboration with professionals, and recommendations for improvement. Parents typically noticed developmental delays, especially in language and motor skills, by age two but encountered lengthy and fragmented referral pathways, long waiting lists, and insufficient guidance. Parents emphasized the value of empathetic professionals and peer networks while also reporting stigma and social isolation. This study contributes new evidence on how structural barriers and cultural attitudes in Serbia shape families’ access to early intervention. Findings highlight the need for streamlined referral systems, transparent and accessible information for families, and interdisciplinary training for professionals. Addressing these issues could reduce delays, alleviate parental stress, and promote better developmental outcomes for children with DD.

1. Introduction

Developmental disabilities (DD) encompass a broad range of conditions characterized by delays or difficulties in physical, cognitive, communication, social, or emotional development. The prevalence of developmental disabilities has significantly increased in recent years. The overall reported prevalence rate of any disability in the United States was 16.65% [1]. However, the prevalence rates of specific developmental disabilities vary due to differences in methodology and socio-contextual factors [1,2,3,4].

Children with DD encounter enduring challenges that affect their physical and psychological capabilities, communication skills, mental well-being, behavior, and ability to care for themselves [2,5,6,7]. These disabilities often manifest early in life and persist throughout one’s lifespan, varying widely in nature and severity from mild to profound. Developmental disabilities can profoundly impact various aspects of life, including physical and mental health, social functioning, behavior, education, employment, parental stress, quality of life, and overall well-being [2,6].

Children with DD require ongoing comprehensive support, services, and interdisciplinary approaches to address their unique needs. Research indicates that appropriate early professional intervention support before age three can improve several outcomes later in life [8,9]. Early identification and detection of disabilities and risk factors are pivotal in optimizing child development trajectories. This process typically involves several steps, including referral for screening and assessment of the child and family. This evaluation establishes a formal diagnosis, identifying the child’s and family’s needs to plan appropriate support and tailor interventions to facilitate optimal developmental outcomes [2,10]. Understanding parents’ experiences, barriers, and supports in accessing these services can inform policy, improve service delivery, and ultimately enhance developmental outcomes for children and well-being for families.

Despite the growing recognition of the importance of early identification, assessment, and intervention, accessing professional support encounters multifaceted barriers. Theoretical frameworks explain factors influencing service accessibility for children with DD, focusing on family needs and activities and factors affecting early intervention (EI) availability [11]. Factors influencing timely access to early interventions for children with developmental disabilities and their families include the recognition of needs, family dynamics, and family perceptions [7]. Factors related to the availability of early intervention services include service availability, clinical relevance, and contextual influences [2,12]. Barriers experienced by parents globally relate to the system (e.g., lengthy waitlists, fractured service pathways, early support access), providers (e.g., lack of qualified professionals, knowledge limitations), and family/child (e.g., financial resources, stigma, level of developmental difficulties, language and communication difficulties, unmet need for early support) [2,5,6,7]. These barriers can delay access to assessments and adequate support.

Various factors are crucial for family-centered practices for children with developmental disabilities. Dunst highlighted that access to early intervention services for children with developmental disabilities is influenced by factors related to resources, institutions, personnel, and relational and participatory practices [13]. The knowledge and skills of professionals in promoting young children’s development, learning, and well-being form the basis for providing support [14]. Trained professionals offer an integrative, multi-professional approach to development, considering all the needs, specificities, and well-being of children and families [15]. Relational practices between professionals and caregivers involve establishing adequate interpersonal relationships, empathy, compassion, active and reflective listening, effective communication, and belief in the family’s strengths and capacities [16]. Participatory practices involve the family’s active involvement in service provision and informed decision-making, using their existing capacities to develop new skills and strengthen their family. These practices require professionals to have good communication skills and flexibility, making this component crucial for achieving positive outcomes for children with developmental disabilities and their families [11,12,13]. By conducting qualitative interviews with parents of children with autism, Burden derived evaluation criteria for autism assessment services based on what parents deemed important [10]. The author highlights the main areas of importance for parents, such as clarity and communication around the assessment process and between services, support and resource provision, emotional aftercare, recognition of concerns, and the need for personalization.

Local Context

Serbia is a country in Southeastern Europe, and according to official data, it has a population of approximately 6.6 million, of which 6.6% are children under the age of seven [17]. In recent years, Serbia has focused on early childhood development and early childhood interventions. In 2016, the Government of the Republic of Serbia adopted the National Program for the Advancement of Early Childhood Development [18], which promotes children’s development and supports parents in creating favorable conditions for their children’s development. The program outlines four main goals: (1) universal prevention; (2) selective, targeted prevention that includes measures directed toward children exposed to risk factors for developmental difficulties; (3) implementation of indicated preventive measures to reduce the intensity of developmental difficulties through timely early interventions; and (4) achieving better organization and functioning within healthcare institutions. Since 2017, UNICEF Serbia, in partnership with relevant ministries, has been implementing a model of family-oriented early interventions, training professionals, and forming local Early Childhood Intervention teams [19].

In 2018, the Government of the Republic of Serbia signed an intersectoral document called “Call to Action” [20], which identified six priorities: (1) support for parenting; (2) accessible preschool education for every child; (3) safe childhood; (4) improvement of children’s health; (5) early childhood interventions; and (6) political and institutional consolidation. Since 2021, a registry for children with developmental disabilities has been operational, with its methodological foundations aligned with international practices for monitoring disabilities. According to the Professional and Methodological Guidelines [21] for managing the registry, the identification of developmental disabilities is conducted through an assessment of functional difficulties affecting the child’s ability to perform basic functions, as well as an evaluation of the intensity of these difficulties. For children under the age of five, the ASQ questionnaire is recommended [22]. Data entry into the registry is carried out in primary healthcare centers and tertiary healthcare institutions. Unfortunately, certain challenges have been encountered in maintaining the registry. According to the Institute of Public Health [23], by 2024, the registry included data on 3418 children up to 18 years of age.

Of the total number of children registered, 1666 [48.7%] were diagnosed with autism spectrum disorders. However, the exact number of children with disabilities and difficulties is still unknown [24]. Despite strides in Serbia over the past decade toward enhancing services for children with developmental disabilities and their families, the need to develop a comprehensive system for implementing early childhood interventions is growing. Situational analysis in Serbia revealed significant insights and critical observations concerning providing services to children with developmental disabilities and their families [24]. Noteworthy findings include the crucial role of parents in expressing concerns about their child’s development. The identified systemic barriers include constraints such as time limitations, overwhelming caseloads, inadequate human resources, financial constraints, and prevailing attitudes toward children with disabilities. Furthermore, the analysis revealed significant challenges parents encounter in identifying and accessing diverse services by themselves [24]. Dissatisfaction with professional support can have a lasting negative impact on both parents and children.

This study addresses parents’ experiences with accessing early intervention services for children with developmental disabilities in Serbia, focusing on barriers, facilitators, and system-specific challenges. This study aimed to explore the following research question: What are the experiences, barriers, and supports encountered by parents of young children with developmental disorders in accessing early intervention services in Serbia? By documenting parents’ perspectives, the study aims to contribute to the international evidence on family-centered practices in early intervention within a specific socio-cultural context. The outcomes of this research will primarily benefit parents of children with developmental disabilities through the development of more responsive, accessible, and family-centered early intervention services. Policymakers, professionals, and service planners will also gain evidence-based insights to improve practice, professional training, and overall system organization.

2. Materials and Methods

2.1. Study Design

A qualitative descriptive design using semi-structured interviews was chosen to gain insights into the experiences and support needs of parents of children with DD. The qualitative study elements were crafted and documented according to the guidelines established in the Consolidated Criteria for Reporting Qualitative Studies [25].

The questions for the semistructured interviews were designed based on the situational analysis results in Serbia [24] and parents’ concerns about their child’s development. Through analyzing their experiences, we aimed to understand the entire process from their perspective and identify their needs, expectations, and key concerns. The questions were open-ended and grouped into three broad thematic domains: (1) How do parents in Serbia perceive and experience the process of accessing early intervention services for their children with developmental disabilities? (2) What barriers and facilitators influence their access to timely and comprehensive support? (3) What recommendations do parents propose for improving early intervention services? Additional questions were asked as necessary to clarify or explain the topics.

A pilot interview was conducted with three mothers to ensure that the questions were appropriate and understandable. After removing potentially duplicate questions, other open-ended questions were used.

The interviews lasted between 30 and 50 min and were conducted with a single parent. Data saturation was determined when no new themes emerged across successive interviews, in line with qualitative research recommendations [26]. No new themes emerged after 13 interviews.

Thirteen parents were interviewed face-to-face, while two chose to be interviewed via Google Meet due to scheduling constraints and participant preference. Participants were offered to suggest a place for the interview that best suited them. All interviews followed the same semi-structured guide, and data from both modalities were treated equally during transcription and analysis. No substantial differences in content or depth were observed between online and in-person interviews. There was no one present besides participants and researchers during the interview. All participants were thanked for their cooperation and offered support or advice from the authors as needed.

All interviews were conducted by a principal investigator (ŠG and MD) with a background in special education and rehabilitation, and with experience in qualitative research, and a research assistant (JR) with a background in speech and language pathology. The interviews were later discussed with an associated team member (SG) who has a background in medicine. The first three authors, experienced professionals working with children with DD and their families, prepared the interview questions. All mentioned professionals prepared and reviewed participant information sheets to ensure the materials were appropriate. We acknowledge that our professional experiences may have influenced how we understood and interpreted participants’ narratives. Our interpretations were inevitably shaped by our disciplinary backgrounds, prior experiences, and assumptions, which influenced the questions we asked, the patterns we noticed, and the meanings we emphasized. Rather than striving for neutrality, we engaged in continuous reflexive practice—through memo-writing, discussion, and revisiting codes and themes—to critically examine how our positions informed the analytic process. This reflexive stance enhances transparency and strengthens the credibility of our findings. The research team had several meetings and discussions before reaching an agreement on the coding and categorization. The entire process was prepared to ensure relevance, validity, and reflexivity, adhering to standards for qualitative inquiry [27].

2.2. Participants

A convenience sample of 15 parents of children aged ≤6 years with DD from Serbia was used. While the sample size is relatively small, it was sufficient to achieve thematic saturation, allowing us to capture rich, in-depth accounts of parental experiences. As a qualitative study, the primary aim was not statistical generalization but to explore the processes, barriers, and supports that families encounter in accessing early intervention in Serbia. The insights gained provide a contextual understanding of systemic and cultural factors affecting parents, which can inform future research and practice. All participants who agreed to participate completed the interview, resulting in no dropouts. Participants had no prior acquaintance with the interviewer but were informed about the interviewer beforehand. In addition to voluntariness, the only criterion was that participants had to be parents [mothers or fathers] of a child [aged up to six years old] with a formal diagnosis provided by a qualified healthcare professional (according to ICD-10 or DSM-5 classification). Of the total sample, 14 were mothers and 1 was a father. Although both parents were eligible, the majority of participants were mothers, reflecting primary caregiving roles in the study context. For analysis, one participant [the father] was excluded to homogenize the sample, allowing the data to be interpreted based on the majority of participants, who were mothers. Children’s diagnoses included disharmonious development, autism spectrum disorder, speech and language developmental delays, and motor developmental delays. Since the study did not aim to differentiate experiences based on diagnosis type, the umbrella term developmental disabilities was used. A sample description is provided in

Table 1. Sociodemographic Data—characteristics of the respondents: mothers (n = 14).

Age of Respondents	Mean 39.43 SD = 6.35
Marital status	Married	Divorced
	71.43%	28.57%
Place of residence	Village	City
	21.43%	78.57%
Employment status	Employed	Unemployed
	64.29%	35.71%
Education level	High school	College	Master’s degree/more
	21.42%	57.14%	21.44%
Characteristics of the child
Age of the child	Mean 4.50 SD = 1.65
Gender of the child	Male	Female
	57.14%	42.86%
Number of children in the family	One	Two	Three or more
	35.71%	35.71%	28.58%
Does the child attend a preschool institution?	Attends	Does not attend
	100.00%	0.00%

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2.3. Ethical Protocol and Procedure

All study activities were approved by the Ethics Committee of the Medical Faculty of the University of Novi Sad, Serbia (number 01-39/249/1). All procedures performed in studies involving human participants followed the ethical standards of the institutional and/or national research committee and followed the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Parents were recruited mainly online via email, social media [Facebook, Instagram], and word-of-mouth. Participants were provided with written and oral information relevant to the study’s aim and provided informed consent before starting the interview. They had time to read the information and were able to request additional details from the authors via email or telephone, which were made available to them. Once they decided to participate in the interview, they informed the contact person by email and personally submitted the signed consent form, at which time they also arranged the most convenient time for the interview. The two participants who were interviewed online also returned signed consent forms in person, at which time they emphasized their preference to participate in the interview online at a time that suited them. Parents were asked not to include identifiable information about themselves or their children, which was removed if included. All participants consented to an audio recording. All participants were informed that they could withdraw at any time if they wished. The interviews were transcribed verbatim and anonymized, with audio recordings deleted after transcription. Transcripts were not returned to participants for correction.

2.4. Analysis

Reflexive thematic analysis, following Braun and Clarke [28], was used to identify patterns and themes in participants’ narratives, ensuring alignment with the research question. Data were analyzed following Braun and Clarke’s six steps: (1) familiarization with the data by repeated reading of transcripts; (2) generating initial codes inductively; (3) searching for themes by grouping related codes; (4) reviewing themes to ensure internal coherence and distinctiveness; (5) defining and naming themes to capture their essence; and (6) producing the final report with illustrative quotes. Data were analyzed using reflexive thematic analysis, supported by MAXQDA24 software. The transcripts were repeatedly read for familiarization by all authors. The first three authors coded meaningful data segments and organized them into preliminary categories. They jointly reviewed the codes grouped into broader conceptual categories, while two authors (ŠG and MD) were responsible for data curation. The process was iterative and reflexive, involving multiple cycles of discussion and reinterpretation among all members of the research team, which enabled the codes to evolve into broader themes capturing shared patterns of meaning. To ensure credibility, we maintained an audit trail of analytic decisions, used researcher triangulation, and preserved authenticity by presenting participants’ verbatim quotations. Reflexive notes documented how researchers’ backgrounds and assumptions influenced interpretation throughout the analysis. Participant quotations were presented to illustrate the themes and identified with participant numbers. Participants were not given the results, so they did not provide feedback on the findings.

3. Results

The identified themes were not predefined but emerged from the content analysis. Seven key themes were generated: identification, the initial search for support, duration, and complexity of the process, information seeking, emotional and practical challenges, collaboration with professionals, and recommendations for practice improvement. The themes are presented in

Table 2. Identified Themes and Subthemes.

Theme	Subthemes
1. Spotting the Early Signs: How Mothers First Recognize Developmental Differences	- Early signs recognition - Initial reactions
2. Taking the First Steps: Navigating the Maze of Support	- Seeking professional help - Navigating healthcare and support systems
3. Emotional Rollercoaster: Coping with Daily Challenges	- Stress and anxiety - Acceptance and Expectations
4. The Long Road: Complexity and Waiting in Early Intervention	- Waiting times - Services
5. Hunting for Answers: How Mothers Seek Information	- Sources of information
6. Working with Professionals: Experiences that Help or Hinder	- Positive experiences of collaboration - Negative experiences of collaboration
7. Shaping the Future: Mothers’ Ideas for Improving the System	- Suggestions for system changes - Desired support services - Community and peer support

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3.1. Spotting the Early Signs: How Mothers First Recognize Developmental Differences

The importance of early recognition of developmental disabilities and initiation of interventions has long been undisputed. However, problems arise when developmental issues are not recognized in time, leading to delays in interventions and receiving support. Studies emphasize the significance of early identification and timely intervention for achieving better developmental outcomes in children [29,30]. Parents are often the first to notice deviations in their child’s development, and the most common reason for consulting a specialist is delayed speech or motor skills [31]. In this study, most parents reported that they or family members were the first to suspect developmental deviations in their children. In two cases, nursery teachers indicated deviation, and in two other cases, pediatricians were the first to express concern about the child’s development.

Parental concern often arose from comparing their child with other children in the family or surroundings, typically around the age of two.

“…and then I saw that other children around him were babbling and something was happening around them, and my child was just silent and staring somewhere…”

[Mother 7]

Early recognition of developmental deviation signs by parents facilitates problem identification, enables the seeking of professional help, and increases the chances of positive outcomes. Conversely, parents who do not recognize or are indecisive about their child’s needs often delay seeking help. Searching for various justifications for developmental deviations can lead to ambivalence or delayed consulting with professionals, resulting in missed critical periods for intervention, which is a risk factor for delayed support.

“Grandma used to say: well, what do you expect from a child, she is still young, what do you expect her to talk about… and it suited us to hear and accept that?”

[Mother 3]

Relatives told us, “Do not make a sick child out of a healthy one; why are you panicking?”

[Mother 6]

“I think the mother-in-law first suspected but said nothing, not out of hidden intentions but thinking everything would be all right.”

[Mother 9]

During this period, our respondents mentioned receiving the most support from their spouses and close family members.

“My husband and I get along well, and we rely on each other. Our parents are also part of this story with us …”

[Mother 7]

3.2. Taking the First Steps: Navigating the Maze of Support

More than half of the respondents indicated that they independently consulted professionals in the private sector for help. Parents often seek private consultations for initial advice and assessments, turning to them for quicker access to specialized and personalized services, mainly concerning issues related to the child’s psychosocial development [32]. Although developmental services in Serbia are formally available in the public healthcare system at no cost to families, parents described difficulties in accessing timely appointments due to long waiting lists and complex referral pathways. This situation contributes to their decision to turn to private providers despite the additional financial burden.

The initial steps involved wandering and visiting multiple professionals. Initial private consultations are the decision of the parents, who, even after that, continue to seek other experts in both private and public institutions.

“…that first appointment was our initiative…”

[Mother 3]

“we ended up independently at that speech therapy center…”

[Mother 9]

Only one mother continued cooperating with the professionals she initially consulted in the private sector.

“Well, in the private sector, there is more dedication, simply put…they strive for you to return to them, they earn from you, while in the public sector, there is less of that heartfelt approach, it seems they work with less enthusiasm…”

[Mother 10]

Upon confirmation from the professional regarding the accuracy of their concerns, other parents sought further experts who could help.

“…I first talked to the doctor…. then we went privately to a speech therapist, psychologist, psychiatrist, and special education teacher …”

[Mother 6]

While consulting various experts, parents’ emotions ranged from feeling helpless: “… there is no one to turn to for help, it is very difficult… a parent is simply alone…” [Mother 5] to using relativization as a strategy to accept the situation: “…I needed support, but knowing the situation around me and what kind of cases exist… I am ‘small potatoes’ for that… people deal with much worse things… [Mother 9]”.

Parents feel pressured by unnecessary examinations and services, as well as a lack of collaboration among sectors.

“…I did not want all those analyses and examinations… at the hospital, the doctor said there was no need; later, in private practice, they told us to do an EEG… so we will do that soon…”

[Mother 2]

3.3. Emotional Rollercoaster: Coping with Daily Challenges

Facing uncertainties, parents’ reactions include disbelief, shock, doubt, and seeking professionals.

“…I remember that day, the children were asleep, and my husband and I read autism symptoms, out of 25 symptoms, my […] had 20 or 21… We went to bed together, hugging and crying, and then we had no idea what to do next.”

[Mother 8]

“I cannot remember exactly what we tried then because I try to hide those moments of life somewhere.”

[Mother 11]

Parents stated that accepting that their child had a problem occurred at the same time as learning about the problem’s nature and the child’s needs. The more information they had and the more active their role in the process, the stronger their confidence and readiness to face the situation.

“When I started delving into the topic, I saw all the problems and began accepting that we had a problem… I learned how to work with him along the way, listening to how others did it.”

[Mother 2]

“I applied all the advice I received… what they said needed to be done, I had it at home by the next day, immediately the toy, the didactic material, we worked.”

[Mother 8]

When parents turn to professionals, they expect a faster, more dynamic resolution of the problem. They hope for quick results, but when that does not happen, stress and anxiety inevitably increase [33].

The fear of stigma, social isolation, and concern for other children in the family compounds this. Stigma and exclusion from the environment create barriers to obtaining adequate support and encouraging the development of children with DD [34].

“We did not go anywhere, no one visited us; we were not even at the playground.”

[Mother 8]

“…when I joke, I say that they see us as some sort of ticking infectious bomb, and if their child touches mine, they think they will become infected and enter some spectrum of autism or something else…”

[Mother 4]

3.4. The Long Road: Complexity and Waiting in Early Intervention

After describing their first encounters with professionals, the parents said that they were quickly receiving the initial consultation and examination. However, a waiting period followed for the child to be included in specific treatments, such as speech therapy. The waiting time depends on the availability of professionals and the number of children needing services.

“The waiting list for treatments is too long, and when our turn comes, if [the child] has a cold or does not want to cooperate, then nothing happens; we wait again.”

[Mother 1]

The waiting time for assessment and inclusion in interventions becomes long and exhausting for parents. They strive to obtain specific information and guidelines, so they continue seeking other professionals, often resulting in multiple visits to institutions without receiving a continuous support plan in one place.

“We visit professionals and collect all those results, reports, and findings like documentation, but we never received such support to say ‘this is the person we will always return to.”

[Mother 3]

The level of stress parents experience depends on whether they receive timely and detailed information about what the assessment entails, when, and how it is conducted. If information is provided promptly and in detail, parents understand what is happening and are prepared for the next steps, and a trusting relationship is built between them.

“Before the testing began, we first had a conversation where everything was explained. Through that, she [the psychologist] wanted to get to know me. Then, she got to know [the child] before testing. She gave him time and space to get acquainted so the testing would be comfortable for him and me.”

[Mother 4]

If timely information is not provided, parents perceive and describe the assessment as a one-time event occurring during the first encounter or something to be documented at the end of treatment.

The assessment rooms are described as small spaces equipped with toys, and all parents mentioned being present during the assessment, which helped them see the child in that situation.

However, opportunities to attend treatments were limited, which posed a barrier to observing the child in learning and stimulation situations. Only two children received interventions at home, while the others had interventions at the kindergarten or the professional institution.

Interventions are conducted so that parents are usually not in the same space as the child, even when the intervention is at home.

“I am afraid I might distract her while she is exercising. That is why I do not attend, but I’d like to peek and watch.”

[Mother 6]

Parents believe that they should sit outside the offices to avoid disturbing the child. They receive feedback from the professional after each treatment about what was done and how the child behaved, but they emphasize that it would be very beneficial to be present inside and watch. Although they can ask and suggest to professionals what would suit them better, they do not use this opportunity because they rely on the professional’s decision on what is best at that moment.

“I did not feel the need to interfere because I understand that these people are trained for this and that they do the best job, better than I would know, do, or whatever, and I do not interfere in that…”

[Mother 3]

3.5. Hunting for Answers: How Mothers Seek Information

Parents experience significant emotional stress during the diagnostic and therapeutic process, but remain proactive in seeking information and help [35]. Faced with waiting without clear guidance on what to do and often confused by contradictory information from various sources, they frequently seek information independently. The internet and various social networks, where support groups for parents are active, are cited as easily accessible sources of information. These sources help them learn more about their child’s problems, their issues, and how to overcome them. They also adopt new terminology, which aids in communication with professionals, understanding written reports, or knowing what to focus on regarding the child’s development and what to ask experts.

“When I faced the situation, I started researching on my own. Since then, I have read more, and things have become clearer. Therefore, I have no problem understanding what they tell me…”

[Mother 5]

By sharing experiences with parents in social groups, they more easily obtain information about different professionals, therapies, services, legal possibilities, and benefits to which they are entitled, which are not often provided in state or private institutions.

“I started following a Facebook group, which is truly good. It is for parents of children with speech and language difficulties. Moreover, I learn more there than anywhere else… for example, parents have the right to longer sick leave, transportation benefits, electricity costs, or other legal matters…”

[Mother 6]

They do not report being offered other sources of information, such as literature or brochures, by professionals.

3.6. Working with Professionals: Experiences That Help or Hinder

Reports on cooperation with professionals highlight both positive and negative experiences. A relationship full of understanding, cooperation, and accessibility is significant to parents. Through this relationship, partnership in decision-making is manifested, with the understanding that other family members also need support and a nonjudgmental attitude when things happen differently than expected. Communication is characterized by patient listening, clear information, and an open and understanding approach, which helps parents cope with the situation in which they seek and/or receive support for a child with DD [36].

“I felt like an equal team member, not that someone served me this, that… we functioned as one family, one team, where the goal was [the child], but for example, I am glad that both the special education teacher and the speech therapist equally valued my feelings.”

[Mother 4]

“I liked that gentle approach, and there was no judgment like some old teachers who look for a culprit in the whole situation. Rather, it was a friendly approach, and from that good atmosphere, the [special education teacher] truly loved him [the child] … something good came out of the whole situation, and I did not go through another stress.”

[Mother 7]

The negative experiences parents reported often relate to professionals who are distant, cold, and judgmental, and who do not consider the needs of the parents and child. Information is usually given briefly, without regard to the parents’ feelings.

“During the assessment, she did not say anything to us, then just typed the report, gave it to us, and said: autism. That was hard, truly hard.”

[Mother 11]

Additionally, professionals are not always available to provide information, responses are delayed, advice is brief, or they are directed to another professional. Such situations contribute to parents feeling powerless and abandoned.

“…and what did I get from the professionals? I got nothing; I got a wall; I could only bang my head against that wall for how cold they were; the doctor then referred us further.”

[Mother 11]

Simultaneously, parents often try to justify such behavior, thinking it is because of overcrowding, lack of staff, or that they are too busy.

“We understand [the professional] always has so many patients, so there is no time to dedicate to us and other things.”

[Mother 6]

3.7. Shaping the Future: Mothers’ Ideas for Improving the System

When thinking about what they would like to have been different in various stages of seeking and receiving services for their child with DD and themselves, parents recommended clear organization of the entire process from identification to receiving services; step-by-step guidelines on the process, roles, and support; and better connections between institutions across all systems and teamwork.

“It would have been helpful if they had given me a brochure or something to read or told me the next steps, who to contact, the timeline, and their experiences in their previous work.”

[Mother 14]

Parents also suggested providing additional information related to the child, their development, what to expect in the coming period, the challenges they might face in the child’s development, what further support the child might need, and where to obtain it, how to overcome some challenging situations, and how to react to the child’s unwanted behaviors. They emphasized the importance of offering strategies to parents for stimulating the child in a natural environment, involving parents working with professionals, and providing more practical information. This was particularly important for parents whose children were not included in regular treatments or lived far from major centers where specialized interventions are provided.

“It would have been helpful to be present during treatments and to get detailed instructions on what to do at home and how to…”

[Mother 13]

There was a highlighted need for additional trained staff and support for parents. Many stated that education is needed for parents and professionals who care for the child during the day, such as preschool teachers. Support is necessary for parents to know how best to support their child and stimulate their development, as well as how to cope with emotionally demanding situations.

“More focus on the parent, not just the child… how the parent accepts it and gradually training the parent on how to behave with the child and talk.”

[Mother 2]

“There needs to be more hiring of professionals for educators and, probably, later in school, their staff to be educated. They should be informed about what to do, how to behave, and generally adapt.”

[Mother 5]

Finally, they emphasized the importance of support groups for parents, connecting with parents who share similar experiences, and sharing experiences with them.

“It would have been helpful to have experiences with parents. That would have brought a lot. To meet someone somewhere, just for a conversation, where they would tell me something about their child, my child is like this, yours is like that, and sharing experiences would have meant a lot…”

[Mother 6]

4. Discussion

Providing early intervention services requires a comprehensive transdisciplinary team approach that delivers adequate services to ensure the optimal growth and development of children with DD and to meet the needs of their families. Previous studies have highlighted the importance of supporting families with infants who experience socioeconomic barriers, emotional and behavioral health challenges, or other stressors [15,37,38]. Additionally, the family’s role as the primary source of information, its role in early problem identification, providing support, and participating in decision-making has been recognized [39].

The children of participating parents presented with a range of developmental disabilities differing in severity, course, and affected domains. While this heterogeneity introduces variability in individual experiences, it reflects the real-world context of early intervention services in Serbia. Thematic analysis focused on identifying shared experiences and common challenges among parents, while also acknowledging that specific needs may vary depending on the child’s condition. We consider this diversity both a limitation and a strength, as it captures a broad spectrum of parental perspectives in everyday clinical practice. In our study, parents played a dominant role in encouraging the timely inclusion of their children in EI. Although parents regularly took their children for check-ups with pediatricians, in most cases, there was no expressed concern about developmental issues during these visits. Parents noted that they often took their children to the doctor when they were ill, which might have caused the children to be sleepy or irritable, leading to the failure to recognize developmental deviations. Initial suspicions that arose after comparing their children to others, although shocking and challenging to accept, accelerated the identification and referral process to EI centers. Reasons for delays in recognizing problems that emerged include the absence of screening procedures, lack of information, failure to recognize signs of deviation, denial of problems, and stigma. Research suggests that, in addition to family involvement, the identification of early developmental issues can be improved by developing standardized protocols and using evidence-based developmental screening tools integrated into regular early childhood check-ups [16,34,40,41]. As shown in previous research, factors that encourage recognition include having a family member with a disability, the birth order of the child (second-born or later) [42], and the number and combination of problems the child exhibits [43].

Facing a diagnosis that changes the life and functioning of a family without complete information about the steps to follow and what to expect as the child grows up creates a sense of uncertainty for parents. In this period, providing adequate information is emphasized so that parents can understand the process, its duration, and possible outcomes for their child. Effective information exchange with professionals and good interpersonal skills are essential for parents to achieve better family functioning, family well-being, and children’s developmental progress [44].

In our study, as well as in the literature [45,46], we find that communication and interaction with professionals are often inadequate. The information provided is often insufficient or not specific enough to answer the parents’ questions. When parents receive incomplete and unclear information, their trust in professionals weakens, and they turn to other sources of knowledge. The increasing influence of the internet, social groups, and various media is a vital resource used to gain insights into children’s conditions, ways to overcome problems, and experiences of others in similar situations. Consistent with other studies, content on the internet and platforms has helped them acquire new knowledge and skills and positively influenced decision-making about further steps in seeking support [47,48]. In addition to information about the child’s physical and mental health, parents emphasize the importance of knowing the steps in the comprehensive EI process. They must understand the assessment, how and where services are obtained, and the work and monitoring plan. Two meta-analysis studies encouraged professionals working with families to focus on children’s and families’ needs for general information. To involve parents and ensure their active participation, it is necessary to understand their needs, expectations, and capabilities [49].

First, experiences in obtaining services for a child with DD for most parents are related to the assessment. Describing the “diagnostic odyssey—the rollercoaster of their journey toward diagnosis, which includes various names applied to their child’s condition, and the impact of no diagnosis,” Bauskis and colleagues [50] (p. 4) state that on this journey, “parents become the navigator, expert, and advocate for their children” [50] (p. 6). In our study, for most parents, the assessment of the child’s abilities and functioning was perceived as superficial, playful, and based on parents’ statements. The evaluation’s conduct and the information provided influenced the subsequent acceptance of the situation and subsequent navigation. Parents were not surprised by the results; instead, they confirmed their suspicions and encouraged them to seek support more intensely.

After the assessment, the waiting period for services was accompanied by uncertainty, anxiety, and a desire for the child to start treatments as soon as possible. The lack of professional staff affects the waiting period, especially in smaller towns. The availability of services also depends on intersectoral collaboration and the use of available resources. When this collaboration is not established correctly, it leads to overlapping services from multiple sectors, burdening the child with numerous specialists who might not be aware of each other’s involvement. Overlapping services and the engagement of various specialists are often due to parents’ proactive search for other experts during the waiting period, leading to a sense of losing control over the situation. The reliance on private consultations, despite the existence of free public services, highlights systemic barriers within the Serbian healthcare system. Families often face fragmented referral procedures, insufficient interdisciplinary resources, and significant delays in accessing services through public channels. As a result, they seek private providers to ensure timely assessments and interventions, even though these services require out-of-pocket payment and may place substantial financial strain on families.

Parents feel the need to participate in the services their child receives actively, but their role is often seen as merely receiving and following advice. Their active involvement and collaboration with professionals are lacking due to the fear that parents might disrupt the intervention process. This finding is consistent with research by Hansson and colleagues, who emphasized the importance and significance of parents in decision-making due to their knowledge of the child but also highlighted the fear that parents could disrupt the process and divert attention [51]. When a child is involved in various supports, issues arise with the expected and actual number of treatments or interventions. Parents expect more intensive and varied treatments, believing that interventions conducted by specialists yield better results. Some studies, such as those by Knox and colleagues, highlight that the frequency and type of treatment can impact outcomes in children with disabilities [52], while studies by Call [53] show that behavioral interventions have a significant effect on individual participants and overall treatment efficacy, regardless of the number of treatments received. Rogers and colleagues reported that for children with autism, neither the number of treatment hours nor the type of treatment affected outcomes in various areas [54]. Considering the conflicting results of previous studies, discussions with parents about factors influencing treatment and its effects are necessary.

Conversations about the importance of support provided in the child’s natural environment, during daily routines, and by those who know the child best and spend the most time with them can help explain the numerous opportunities parents have during everyday activities to stimulate the child’s development and the significance of their role in it. Supporting parents and coaching them to carry out various activities through daily life routines contributes to achieving functional goals and strengthening family capacities, satisfaction, and confidence, and is an effective way to encourage child development [45,55].

Reflective practice in collaboration with professionals, especially regarding their availability, understanding, and empathy, is positively evaluated. However, the results indicate the presence of emotional and psychological insecurity and anxiety caused by cold and nonprofessional attitudes, lack of explanations, uncertainty about outcomes, and a sense of being alone. Interestingly, parents tried to find acceptable reasons and justifications for professionals’ behavior that did not suit them. Parents in situations where their child needs intensive support often feel vulnerable and dependent on the opinions and work of professionals. Reasons for understanding the complex psychological dynamics that may lead parents of children with disabilities to justify inadequate professional behavior can include a sense of learned helplessness when parents believe they have no control over the situation. Parents may feel discomfort when their expectations about the quality of professional care are not met or when they strive to maintain a positive attitude toward professionals. To reduce this discomfort, parents may justify inadequate behavior, adapting it to their beliefs about the role of professionals, thus using justification as a coping mechanism. The obtained data emphasize the importance of adequate contact and communication between parents and professionals, listening to their concerns, and working together to achieve goals important to the child, parents, and professionals.

At the end of the discussions, parents summarized their suggestions for improving current practices, and the responses were very similar. Almost all agreed on the need for a clear plan for organizing services from initial screening to parental support. The existence of an informational guide on child development, signs of developmental delays, the team, and the professionals to contact was emphasized. The application of screening instruments and the importance of pediatricians, education, and staff in timely intervention initiation have been highlighted in the literature [39,56]. A recommendation for improving practice is to provide professional support to parents to utilize learning opportunities in the child’s natural environment optimally.

Parents need effective strategies for integrating information from professionals, posttreatment advice, and everyday situations within family routines and activities. They expressed a lack of creativity in independently devising a strategy for everyday life with their children with DD. According to the literature, collaborative consultation with professionals can enable them to become partners in choosing strategies, creating routines, and adapting situations, which is crucial for their confidence and managing daily situations [14,57]. This support is also important because children spend time in kindergartens, and adequate collaboration and strategy implementation in all environments contribute to achieving common goals. Parents suggest additional education for themselves and professionals of various profiles to ensure quality care and good collaboration. Finally, parents highlighted the need for psychological support and support from other parents. This would provide continuous assistance from both professionals and peers with shared experiences.

Although this study identified factors influencing the receipt of EI services and provided insights into areas for practice improvement, certain limitations exist. This study is exploratory and qualitative, aiming to understand parents’ perspectives rather than to provide statistically generalizable findings. The small sample size and heterogeneity of children’s conditions limit the transferability of results. The sample size is small and relatively uniform concerning the spectrum of developmental disabilities exhibited by the children, making it essential to examine the experiences of parents of children with other types of disabilities. Building on our findings, future research could examine distinct groups of children based on the severity and course of developmental disabilities, as well as differential access to early intervention services. Such comparative studies would help to clarify which barriers and supports are universal and which are condition-specific, thereby informing targeted policy and practice improvements. Only one parent participated in the study, so it would be beneficial to explore the perceptions and attitudes of other family members. This study included only one father, which is insufficient for obtaining data from fathers or mothers. The focus on mothers allows for a coherent dataset while acknowledging the importance of including fathers in future research. All three authors are women who conducted the interviews and/or participated in writing the paper and have experience working with children with DD. Potential bias due to their closeness to the mothers’ issues could be mitigated by including a male researcher.

5. Conclusions

Based on interviews with parents of children with developmental disabilities, seven main themes were identified that parents most frequently discussed. The research indicated that parents are often the first to become concerned about their child’s development and proactively seek professional consultations. Additionally, parents are most commonly concerned about delays in speech, language, and motor skills, which they notice through comparisons with other children in their environment. Parents often initially approach professionals working in the private sector but simultaneously continue to seek support within the public system. Following consultation with a professional, parents expect quick and dynamic solutions, and situations where this does not occur imply increased stress and anxiety. These parents face the fear of marginalization and often feel abandoned and isolated. Parents’ expectations regarding treatment implementation are treatment quality, intensity, and frequency. Information sources are predominantly informal, with parents turning to the internet and available social media groups, stating that such information directs them to professionals from whom they expect more detailed information. They expressed a desire for communication characterized by understanding, active listening, and guidelines for working in home environments. When asked for recommendations to improve the assessment process, parents emphasize the necessity for clearer organization of procedures from identification to service provision, the existence of defined guidelines, and team collaboration.