Abstract
Background:
Awareness of autism spectrum disorder (ASD) may impact early diagnosis, intervention, and developmental outcomes the disease.
Objective(s):
To assess the awareness and knowledge regarding ASD among mothers of children with ASD in the State of Qatar.
Methods:
We conducted a cross-sectional study on 600 mothers of eligible children at 10 main primary health care centers (PHCCs) in Qatar. A qualitative approach through a pretested questionnaire was used to collect data.
Results:
Around 91.2% of the mothers were aware of ASD, of which 32.7% had good knowledge of the common disease features. Mothers’ satisfaction with the delivered healthcare was variable with regard to health education, support and interventions.
Conclusions:
Although mothers’ awareness of ASD was high, their actual knowledge about the disease features was poor. Mothers’ experience with ASD is vivid expressing emotional and social aspects, together with satisfaction about relevant services.
Introduction
Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder that significantly impacts an individual’s social, communication, and behavioral well-being. 1 Currently, ASD has rapidly growing global prevalence rates and is estimated to affect 98 per 10 000 children worldwide. 2
ASD can be detected at the age of 18 months or younger, but at the age of 2 years, a diagnosis by an experienced professional can be considered very reliable. 3 Parents, especially the mother, are often the first to notice delays in the development of their children.4-6 But unfortunately, the gap between the parents’ initial reporting and diagnosis is frequently unnecessarily prolonged.7-9
Knowledge of ASD was studied in several population subgroups10-13 which basically showed that increased general awareness of ASDs has resulted in increasing numbers of children being diagnosed at young ages and has been associated with positive developmental outcomes.10,14,15 On the other hand, parent’s lack of knowledge or awareness about ASD can delay their initial concern, therefore, seeking help and obtaining diagnoses are accordingly delayed. 16
Studies conducted across Arab countries, particularly in the Gulf region such as Saudi Arabia, 17 United Arab Emirates (UAE), 18 and Yemen,19,20 have revealed varying levels of ASD awareness, with many indicating a general lack of knowledge and misconceptions. This can be explained by the Social Cognitive Theory as a conceptual framework where knowledge levels vary significantly based on demographic factors such as education level and professional experience.
In Qatar, a content analysis of ASD portrayal in the state’s printed media revealed significant gaps in the accurate and destigmatizing representation of the disorder. 21 Considering the Health Belief Model, caregivers of children with autism in Qatar are facing financial burdens, social stigma, and limited access to specialized services. 22 Perception of ASD in Arab countries is influenced by cultural and societal factors, often impacting support and contributing to stigma and delays in diagnosis and intervention. 23 Studies in Egypt and Oman have highlighted the persistence of misconceptions about ASD’s causes and characteristics, with many individuals believing in supernatural explanations for the disorder.24-26
Although ASD during the last decades was a rich area of study where knowledge of autism among child’s mothers/parents, health care providers and educational guardians (teachers) was extensively revealed through research worldwide, still the area of knowledge of mothers of non-autistic children is scarce. Lack of awareness regarding autism can be a consequence of the high levels of stigma associated with any form of mental illness and this ultimately results in the child not gaining the appropriate access to crucial early interventions and to social interactions that are needed to achieve his or her maximum potentials in life. 27
To the best of our current knowledge, no studies so far have investigated the mothers’ knowledge of ASD in Qatar. Health-related population-based surveys in Qatar are usually conducted in the Primary Health Care Centers (PHCCs) due to the high holistic utilization of their services, as being free of charge and of high standard of quality. Recruiting participants from the PHCCs is accessible and representative. Mothers are the ones who are typically portrayed as a child’s primary caretaker, and proper care is always supported by correct knowledge.
We aimed in this study to explore the knowledge regarding ASD among Qatari mothers of children aged 18 to 48 months attending PHCCs. Guided by the aforementioned theoretical framework, we hypothesize that family demographics may significantly influence their knowledge about autism. In this context, mothers with higher levels of education, those who have received health education on ASD, will demonstrate higher levels of ASD knowledge and health-seeking behaviors that will help in the early identification of developmental delays in their children. Understanding mothers’ knowledge of ASD and addressing misconceptions will assist in planning an evidence-based intervention which copes with the problem and may help in early diagnosis and better management.
Methods
A cross-sectional study was conducted on 600 mothers of Qatari children aged 18 to 48 months attending Well Baby Clinics (WBCs) at 10 main PHCCs in the state of Qatar. Details on study setting, sampling and population were described in an earlier study published by our group. 28 Briefly, we employed a probability 2-stage sampling technique with proportionate allocation of participants to enroll eligible mothers attending PHCCs.
The sample size was calculated based on a total target population of 27 805 Qatari children aged 18 to 48 months registered in all PHCCs at the start of the study period, and a probability or prevalence of ASD among a comparable population = 26%, 29 considering a confidence level of 95% and 5% as an acceptable error rate.
The M-CHAT™ criteria were used in ASD screening. 30 Estimation of the ASD prevalence was done using the positive predictive value (PPV) of the M-CHAT™ tool. The number of ASD screen-positive children in the M-CHAT™ was 25.13 per 10.000 (26 out 600 children [4.3%]).
Data Collection Tools
A structured questionnaire was developed by the researcher to collect data on participants’ sociodemographics and their knowledge of ASD. The variables used in the questionnaire are detailed in Supplemental File S1. Content and face validity were of the developed questionnaire established through an extensive literature review and consultation of experts in the fields of community medicine and pediatric psychology to ensure validity and reliability. The questionnaire was originally prepared in English and translated into Arabic language with back translation at an HMC accredited translation center (Supplemental File S2).
In the process of data collection, the collectors used first the structured questionnaire with the participating mothers, followed by the M-CHAT™ which we used to screen for ASD among the enrolled children. This sequence aimed to avoid the provision of leading answers, since the questionnaire included questions suggestive of ASD-related features.
Pilot Testing of the Questionnaire
Prior to data collection, a pilot study was conducted on a convenient sample of 20 participants from one randomly selected health center (Al-Wakrah PHCC), to pre-test for any difficulty and/or any inappropriateness of the tool, as well as, measure the time needed to complete each questionnaire and the proper accompanying logistics that maintain privacy and anonymity of the interviewees. Necessary adjustments to the questionnaire and study procedures were done based on the results of this pre-test. The average time taken for each participant to complete the questionnaire was around 10 minutes. These piloted 20 participants were later omitted from the study database.
Data Collection and Management
Data was collected by the researcher and trained data collectors after adequate standard training followed by continuous monitoring. All inquiries of the data collectors were answered prior to data collection. Data collectors were also trained in a standardized way for the process of random selection of participants from the daily appointment list of WBCs. Collected data was reviewed on a daily basis for completeness and consistency before commencing data entry.
Collected data was entered solely by the principal investigator to ensure consistency into a password-protected personal computer. The database was constructed using the Statistical Package for Social Sciences SPSS™ software version 22. After the completion of data collection, data was summarized using frequency distribution tables, percentages, and proportions. Appropriate bar graph and pie charts were used whenever appropriate. Mathematical summarization using the Mean and Standard Deviation (SD) was used whenever appropriate for quantitative data. Possible associations between categorical variables were statistically assessed using the Chi-Square (χ2) test of independence. The threshold for P-value was set at ≤.05.
We considered thematic analysis of the qualitative data. We closely examined the data to identify common themes, ideas, and patterns. We categorized the mothers’ responses into common shared themes and summarized them in a table.
Results
Most of the interviewed mothers (91.2%) were aware of ASD, while a minority (8.8%) never heard about a disease called autism (Table 1). Among those who are aware of ASD (n = 547), only one of the enrolled children (0.2%) was already diagnosed with ASD at the time of the study, whereas 4 of the mothers reported having another child (other than the current studied child) diagnosed with ASD at time of the study. Utmost 12% of the mothers gave a positive family history of the disease, while 32.9% of them knew someone (among their neighbors, work colleagues, or friends) who is already diagnosed with ASD (Table 1).
Mothers’ Awareness About ASD.
Abbreviation: ASD, autism spectrum disorders.
When looking at the individual questions on the knowledge measure there was a wide range of accuracy (9.3%-83.9%). In responses to 10 questions relevant to the common features of autism, most of the mothers answered correctly questions #1 (83.9%), #3 (78.4%), and #7 (79.9%); while most of them answered incorrectly question number 2 (9.3%). After scoring the responses to the knowledge question, only one-third of the mothers who were aware of ASD (32.9%) had a good knowledge regarding the disease (Table 2).
Mothers’ Responses to Knowledge Questions on ASD.
Abbreviation: ASD, autism spectrum disorders.
Mother’s knowledge of ASD was scored as “Good knowledge” among those having more than 1 child compared to mothers having only 1 child and the difference was statistically significant (34.2 vs 18.2%, P = .030). On the other hand, the mother’s age, total family income, mother’s and father’s educational level, having a family history of psychiatric disease, or having a prior experience with ASD, did not show significant differences in relation to the mothers’ knowledge level (Table 3).
ASD Knowledge Level in Relation to Some Mothers’ Characteristics and ASD Experience.
Abbreviations: ASD, autism spectrum disorders; QR, Qatari Riyals; χ2, Chi-Square test of independence.
P < .05 is significant.
P value based on Chi Square test.
All the mothers in our study were Qatari (all are Arab Muslims), so there is no racial/ethnic variation to report.
Among the current study participants, 5 mothers reported having an already ASD diagnosed child. One of them was enrolled (ie, the child is 18-48 months old), and the other 4 are older. Table 4 summarizes the qualitative analysis of the responses of 4 of these mothers regarding their experience with the disease and the relevant healthcare, while the fifth did not answer this section. Three out of 4 (75.0%) of the studied mothers mentioned that the first concern of child development was raised by them, while the grandmother was the first to notice in only 1 case. The age of the child when the family first became concerned about the child’s development ranged between 12 and 30 months. At that time, their first concern was mostly the ability to talk and language skills, while social skills, being isolated, or repetitive actions were the concerns of other mothers.
Experience of Mothers Having ASD Diagnosed Child With the Disease and Relevant Healthcare.
Abbreviation: ASD, autism spectrum disorders.
The concerns about child development derived mothers to certain actions including searching for information on the web, being more vigilant about developmental skills, or early seeking medical advice. None of the studied mothers thought of any barrier to their selected actions, and the resultant benefit was mostly better decision making regarding the child’s condition. The cue to action that raised the attention of some mothers to the existence of the disease, varied between the vaccination booklet developmental milestones of a normal child and the ASD screening in Well-Baby clinic, while others had no clue to raise their attention.
The age of final ASD diagnosis ranged between 1.5 and 5 years, and based on their experience, early diagnosis could be enhanced through attaining early appointments in specialized clinics and improvement in the mothers’ knowledge about the disease.
The satisfaction bout the delivered special healthcare was variable and accordingly, the mothers asked for more accessibility to the service through the provision of a special clinic in the PHCCs and improvement of appointment waiting.
All of the 4 mothers who responded to this open-ended section of the questionnaire described their enormous and overwhelming psychological upset about the diagnosis of their child and their fear of being stigmatized because of it.
Discussion
Despite the high awareness of ASD, most of the interviewed mothers had poor knowledge of the common disease features. This finding came concordant with data from Saudi Arabia which addressed the general public knowledge regarding ASD. The study showed that although most of the participants were aware of autism, many misconceptions were overridden. They concluded that there is a need to increase public awareness of ASD.6,17
The general attitude toward mental health and developmental disorders can lead to stigma and hinder knowledge dissemination. The limited awareness and misconceptions about ASD in many parts of the Arab world highlight the need for targeted educational interventions to enhance ASD recognition and support. These findings underscore the need for improved media representation, public awareness campaigns, and policy reforms to support individuals with ASD and their families in Qatar. Addressing these misconceptions requires culturally sensitive public education initiatives that emphasize the neurodevelopmental basis of ASD and promote inclusive policies for affected individuals. Reducing stigma and empowering families through community engagement can enhance understanding and support for autistic individuals. 31
Unique cultural beliefs and social repercussions in the Arab world might impact early ASD diagnosis and intervention. Contrary to global trends, socioeconomic factors did not predict ASD knowledge in this study, possibly due to Qatari-specific access to universal education and healthcare. The study participants were predominantly of high literacy and reported more than average monthly income, thus are likely to be knowledgeable about autism.
The only statistically significant factor found associated with good knowledge about ASD was being a mother of 2 or more children, which is possibly explained by the anticipated better experience of these mothers about the typical behavior of the normal child when having children 2 or more in number, while unexpectedly the educational level of parents did not show a significant association.
Limited studies were conducted in the Arab countries to explore the associated factors with better knowledge about ASD. In a similar setting, a study was conducted on a purposive sample of 197 mothers of autistic children attending the child psychiatry out-patient clinic at a university hospital in Egypt. The result revealed that 50.0% of the studied sample had poor knowledge regarding ASD. 32 Likewise, Elhawat et al reported in a multi-center study in northern Egypt that 68.3% of the parents had poor knowledge of their children’s disorder. 33
A study done in Jeddah, Saudi Arabia on 391 general and special educational teachers to assess their knowledge regarding ASD found that teachers had a mean knowledge score of 0.58 (with a range of 0.5-0.7), which indicated inadequate knowledge about the disease. The study also designated that being a special education teacher, teachers with higher education levels, with fewer years of experience, and those who had previous contact with ASD students, had a statistically significant higher level of knowledge. 34
Another study was conducted among medical students in Taif, Saudi Arabia using a specially designed “Knowledge about childhood autism among health workers” questionnaire. The researcher declared that the knowledge is generally low and the mean score of knowledge was significantly higher in older students compared to the juniors (8.99 ± 1.91 vs 6.44 ± 2.24, P < .001). The study concluded that the medical curriculum should include information about ASD to help better screening, early diagnosis, and thus, better prognosis of ASD patients. 35
We considered a qualitative analysis of data obtained from 5 mothers of children diagnosed with ASD to describe mothers’ experience with ASD and the medical services provided in the State of Qatar for ASD patients. Four of the 5 mothers responded to this section of the study and admitted that they (the mother) were the one who first became concerned about the child’s development, although one was through the vigilance of the grandmother. Similarly, a study by Sicherman et al, 35 revealed that the developmental concerns of undiagnosed toddlers are usually expressed by the parents. Their pilot study estimated the effect of family structure on disease discovery and age of diagnosis. They conducted an online survey with 477 parents of children with autism, where more than half of parents who said another person recognized the diagnosis said that it was a grandparent, and a quarter said it was the maternal grandmother.36,37
In the current study, the age gap between the first concern and the age of disease diagnosis ranged from 4 months to as high as 30 months. The relatively short period between first concern and final diagnosis may not be very consistent with another study that showed an average delay of around 3.5 years from the point at which parents first sought health advice with their concerns to the confirmation of ASD diagnosis, and even a longer duration if they consider the age at first concern. The study was conducted in the UK as an online survey on a sample of 1.047 parents to address their experiences and opinions regarding the process of attaining a diagnosis of ASD. The results revealed it was not until a year after the parents first had concerns about their child’s development before they sought professional help. 38
The present study showed that one-half of mothers reported that the early concern in their children was being delayed in language abilities, followed by being behind in social skills, and lastly the observation of repetitive actions. That was consistent with a study by Herlihy et al 38 that included 69 children, and revealed that the most commonly reported first concern was language delay/communication difficulties, followed by social symptoms and repetitive actions. The study investigated the type and age of parent’s first concern regarding their toddler’s ASD features prior to diagnosis. It included participants originally taken from 2 studies published in 2001 and 2009 by Robins et al, 39 aimed to validate the M-CHAT. Herlihy et al, also mentioned that symptoms of ASD may appear as early as 6 months, but parent concern, which can precipitate evaluation, often lags significantly.
Regarding mothers’ satisfaction with their post-diagnosis support experience, the enrolled 4 mothers showed variable degrees of satisfaction ranging between being very satisfied to very unsatisfied, and all of them agreed about their underprivileged delayed appointments. In the same area, the UK study of Crane et al, 37 about parents’ experiences and opinions regarding the process of attaining ASD diagnosis, showed agreement about long delays between the final diagnosis being made and parents first having concerns about their child’s development. It also highlighted that seeking help was significantly associated with lower overall parental satisfaction.
While centralized healthcare facilities can enable comprehensive and specialized care, they may also result in longer travel distances or wait times, potentially causing inconvenience or delays for expectant mothers, especially those in remote areas. Moreover, Qatar unique healthcare infrastructure in terms of reliance on expatriate professionals might lead to concerns about continuity of care and cultural sensitivity, impacting maternal comfort and satisfaction. Expatriate providers may face challenges in understanding local cultural preferences and language differences, which might affect communication. Policies and healthcare practices that incorporate cultural competence and community engagement must be considered to help improving maternal experiences in a predominantly expatriate-influenced healthcare system. 40
A qualitative study was conducted in Greece on 9 mothers of children with ASD to underpin their lived experiences and perspectives. A key finding in the themes was the sense of burden, distress, and vulnerability experienced by the mothers. The findings provide a valuable understanding of the experiences of mothers raising children with ASD in one of Europe’s medium-income countries. In that study, one mother expressed her bad experience with her ASD child and the services provided. According to the mother they tried every single center whether governmental or private center, they even had special home teachers for him, but did not receive the desired improvement for her child. However, when she left her job and stayed at home with her child, she noticed a big improvement in his condition. According to the mother her child’s case is mild, and he may almost grow out of ASD. 41
In conclusion, mothers play an important role in supporting their children with autism. Education program for mothers of children with autism spectrum disorder is highly recommended to improve knowledge and attitude of the community toward the autistic children and their families through mass media. The present study demonstrated a significant lack of ASD knowledge among the general mother population with a wide range of accuracy within the ASD knowledge base of parents.
Overall, Qatar’s healthcare system’s structure offers advanced and high standard healthcare but requires ongoing efforts to address cultural, language, and accessibility issues to optimize maternal experiences.
The findings of the present study provide a valuable understanding of the experiences of mothers caring of children with ASD in one of middle eastern countries. The satisfaction with the delivered special healthcare was variable but concerning regarding the accessibility of the service. Efforts should be made to (1) conduct an ASD awareness campaign targeting mothers attending WBC clinics to improve their knowledge about the disease, (2) develop a comprehensive training program for health educators and other caregivers regarding ASD, (3) provide more specialized centers caring for children with to decrease the waiting time to access post-screening assessment, and thus early diagnosis and management that probably improve future outcome.
Limitations
Here we address some limitations, such as the cross-sectional design of the study, which limits the ability to establish causal relationships. Qualitative insights were limited by the lack of recordable interview data or include specific quotes from mothers to illustrate a deeper understanding of their experiences and perspectives. We cannot exclude the potential impact of social desirability bias on the responses to the questionnaire which can lead to pretend self-reports and inaccurate study conclusions. Importantly, the homogeneity of the study participants being all Qatari Arab Muslims might limit the generalizability of the research finding to Qatar’s diverse expatriate population.
Supplemental Material
sj-docx-1-gph-10.1177_30502225251348293 – Supplemental material for Mothers’ Awareness and Knowledge of Autism Spectrum Disorder (ASD): A Multi-Center Study in Qatar
Supplemental material, sj-docx-1-gph-10.1177_30502225251348293 for Mothers’ Awareness and Knowledge of Autism Spectrum Disorder (ASD): A Multi-Center Study in Qatar by Aisha Abdulraheem Sameea, Ekram Wassim Abd El-Wahab and Sherif Omar Osman in Sage Open Pediatrics
Supplemental Material
sj-docx-2-gph-10.1177_30502225251348293 – Supplemental material for Mothers’ Awareness and Knowledge of Autism Spectrum Disorder (ASD): A Multi-Center Study in Qatar
Supplemental material, sj-docx-2-gph-10.1177_30502225251348293 for Mothers’ Awareness and Knowledge of Autism Spectrum Disorder (ASD): A Multi-Center Study in Qatar by Aisha Abdulraheem Sameea, Ekram Wassim Abd El-Wahab and Sherif Omar Osman in Sage Open Pediatrics
Footnotes
Acknowledgements
We would like to acknowledge the study participants for accepting to participate in the study.
Ethical Considerations
The study was approved by the institutional review board and the Ethics Committee of the Hamad Medical Corporation (HMC) in Doha, Qatar [ref. no. PHC/IEC/17/10/035]. The research was conducted in accordance with the ethical guidelines of Helsinki’s Declaration (2013). Appropriate official approvals were obtained prior to the actual fieldwork. Mothers of the eligible children were invited to participate in the study after careful explaining the aim and concerns of the research. Informed oral consent was obtained from each participant and they were given the right to decline participation any time without further consequences. Data sheets were coded with numbers to maintain the anonymity and confidentiality of patient’s data. The collected data was exclusively used for research purposes and stored in a password protected computer accessible only to the principal investigator. This article does not contain any studies with animals performed by any of the authors.
Consent for Publication
All authors approved the manuscript for publication.
Author Contributions
Every author made a substantial contribution to the work that was published, whether it was in the conception, design, execution, or all of these phases of the research process, including data collecting, analysis, and interpretation. Additionally, they agreed to be held accountable for all aspects of the work, gave their final approval for the version to be published, and decided on the journal to which the manuscript was submitted. They also contributed to the drafting, revision, or critical review of the paper.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
All data are fully available without restriction by the corresponding author
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
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