The Impact of Autism Spectrum Disorder on Parents in Arab Countries: A Systematic Literature Review

Abstract

Background:

Having a child with autism spectrum disorder can have significant psychological effects on parents. This systematic review summarizes the current state of literature underscoring the impact of autism spectrum disorder (ASD) on parents in Arab countries

Methods:

A systematic search of seven databases (PubMed, Scopus, ProQuest, Google Scholar, ERIC, Academic Search Complete, and PsycINFO) was performed, which identified 24 studies (20 quantitative studies and four qualitative studies) that included 3,299 parents or caregivers of children with ASD. These studies were conducted in 10 Arab countries (Saudi Arabia, Jordan, Egypt, Kuwait, Bahrain, Oman, Emirates, Palestine, Qatar, and Lebanon).

Results:

The majority of the included studies found that ASD has a significant negative impact on the mental health and wellbeing of Arab parents. It was found that parents of children with ASD have a poor quality of life (QoL) and an increased risk of psychological disorders. These findings were in contrast to findings of parents of typically developing children and children with other developmental disorders. Challenges faced by parents of children with ASD were associated with several child- and parent-related factors. The most common coping strategy used by parents was religious coping.

Conclusion:

The impact of ASD on parents has only recently gained traction among researchers in Arab countries. Despite several knowledge gaps, published studies have provided useful information outlining the impact of ASD on parents in some of these countries. Further research comprising larger random samples and using varied research and data-collection methods is required to understand the multifaceted challenges experienced by parents raising children with ASD in Arab countries.

Introduction

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder that intersects racial, ethnic, and socioeconomic boundaries, and is characterized by persistent impairments in social interactions, verbal and non-verbal communication, as well as restricted and repetitive patterns of behavior, interest, or activities (American Psychiatric Association, 2013). Over the past three decades, there has been a global increase in the prevalence of ASD (Elsabbagh et al., 2012; Blaxill et al., 2022).

Extensive research indicates that parents of children with ASD often experience elevated levels of parenting stress (Hoffman et al., 2009), increased mental health problems (Cohrs and Leslie, 2017), and reduced physical health (Smith et al., 2012; Eisenhower et al., 2013) in contrast to parents of typically developing children (Ingersoll and Hambrick, 2011; Padden and James, 2017), and parents of children diagnosed with other disabilities (Hayes and Watson, 2013; Barroso et al., 2018). Furthermore, ASD significantly impacts family life as well as the marriage system (Karst and Van Hecke, 2012; Serrata, 2012; Pisula and Porebowicz-Dörsmann, 2017).

Increasing evidence suggests that the impact of ASD on parents may be attributed to the severity of the emotional and behavioral problems exhibited by the child (Leyfer et al., 2006; Baker et al., 2012; Karst and Van Hecke, 2012). Furthermore, this is exacerbated by exhaustive caregiving demands, poor parental coping capabilities, lack of support (Weiss et al., 2014; Papadopoulos, 2021), economic burden (Ou et al., 2015), as well as the perception and understanding of ASD among parents (Ilias et al., 2018).

The literature also suggests that cultural background is an important variable to consider when analyzing the impact of ASD on parents (Ilias et al., 2018; Zakirova-Engstrand et al., 2020). Parents' awareness and beliefs about the etiology and prognosis of ASD can affect parental responses, coping strategies, as well as treatment decision-making (Hebert and Koulouglioti, 2010; Zuckerman et al., 2016; Brewton et al., 2021).

The majority of ASD research has been conducted across the United States (US) and the United Kingdom (UK) (Clark and Adams, 2020; Roche et al., 2021), in contrast to other parts of the world where research on ASD is relatively limited (Samadi and McConkey, 2011; Rice et al., 2012). In Arab countries, ASD is a new field of research that has gradually evolved in the past two decades. However, severe information disparities with regards to the different aspects of ASD have been noted, namely, epidemiology, characteristics, burden, as well as support available to children and families.

To date, four literature reviews have been published on ASD research in Arab countries (Hussein and Taha, 2013; Salhia et al., 2014; Alnemary et al., 2017; Alallawi et al., 2020). Alallawi et al. (2020) conducted a systematic scoping review of social, educational, and psychological research relevant to persons with ASD and their families in Arab countries. Using eight databases, Alallawi et al. (2020) identified 70 studies published predominantly by researchers from Saudi Arabia and Lebanon. Most of the identified studies investigated the prevalence of ASD; diagnosis issues; the experiences and outcomes of Arab caregivers for individuals with ASD; as well as the social and communication behavior of Arab individuals with ASD. The results of the scoping review revealed significant gaps in research related to ASD interventions and services. Furthermore, upon appraisal of the identified studies, the authors found them to be of low quality.

Alnemary et al. (2017) reviewed published research on ASD in the Arab world from 1992 to 2014. The authors searched for studies published in English using PubMed, Web of Science, and EMBASE databases. In total, the authors identified 142 publications that were produced mostly by researchers in Saudi Arabia, Egypt, and Oman. For the most part, these publications addressed the biology, risk factors, and diagnosis of ASD. However, limited studies investigated intervention, services, infrastructure and surveillance, or life span issues related to ASD.

Hussein and Taha (2013) analyzed published literature on ASD in the Arab world from 1992 to 2012 using the Medline database. In total, 79 articles were identified that focused predominantly on the etiology of ASD as opposed to services and interventions.

Finally, Salhia et al. (2014) conducted a systemic review of the epidemiology of ASD in Arab Gulf countries, namely, Saudi Arabia, United Arab Emirates, Oman, Kuwait, Qatar, and Bahrain. The literature search was conducted using PubMed and ScienceDirect databases. However, limited studies investigating the epidemiology of ASD were identified by the authors. Those studies showed a prevalence rate ranging from 1.4 to 29 per 10,000 persons. Furthermore, no studies explored the burden of ASD on the child, family, or society.

Due to the limited scientific evidence available on challenges faced by parents raising children with ASD in Arab countries (Alnemary et al., 2017; Al Khateeb et al., 2019; Alallawi et al., 2020), the current systematic literature review was undertaken. This review aimed to address this crucial knowledge gap in ASD research by locating and synthesizing all studies underscoring the impact of ASD on parents in Arab countries.

Methods

Search Strategy

Studies investigating the impact of ASD on parents in Arab countries were reviewed and analyzed. To identify the relevant literature, seven databases were searched, namely, PubMed, Google Scholar, ERIC, CINAHL, Education Research Complete, Springer Link, and Psychology and Behavioral Sciences Collection. The review was conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Moher et al., 2009). Three sets of search terms were used in the initial search, namely, “Autism” OR “ASD” OR “Asperger” OR “Pervasive Developmental Disorders” AND “parents” OR “mothers” OR “fathers” OR “stress” OR “well-being” OR “mental health problems” AND “Arab countries” OR “Algeria” OR “Egypt” OR “Libya” OR “Tunisia” OR “Morocco” OR “Mauritania” OR “Sudan” OR “Somalia” OR “Djibouti” OR “Bahrain” OR “Emirates” OR “Oman” OR “Kuwait” OR “Qatar” OR “Saudi” OR “Yemen” OR “Jordan” OR “Syria” OR “Iraq” OR “Lebanon” OR “Comoros” OR “Palestine.” Furthermore, the key concept of ASD was searched using the term “Arab countries OR Arab World” to identify studies that might have been omitted. Finally, the reference lists of the studies included in the review were scanned for additional studies.

Inclusion and Exclusion Criteria

This review included studies that were: empirical, conducted in an Arab country, related to ASD impact on parents, published in English, and published in a peer-reviewed journal. Literature reviews, doctoral dissertations or master theses, conference papers, chapters, and theoretical articles were excluded. Publication dates were not restricted to ensure all possibly relevant articles were included.

Study Selection

Figure 1 presents a flowchart of the process used to identify and select relevant studies. The database and keyword search listed above yielded 714 studies. Eighty-eight articles were excluded due to duplication across the databases. Upon screening the titles for eligibility, 572 articles were excluded. Furthermore, seven articles were excluded after reading the abstracts. After assessing the full texts of the remaining 47 articles, 22 articles were excluded. These articles were excluded because 10 of them were not empirical studies, six were review articles, three articles were not available in full text and five articles were not primary studies. A manual search of reference lists of the identified articles resulted in the identification of two additional studies. Therefore, the final sample included 24 studies.

Figure 1

Charting the Data

The authors developed a coding form to assist with the data extraction. The coding form comprised sections designed to obtain information regarding the author(s), publication year, country, purpose, methods, and key findings. Thereafter, the first author used this chart to extract data from the included articles. The second author independently extracted data for 29% (n = 10) of the included articles. Disagreements among the authors were resolved through discussion. Finally, the information was analyzed to identify themes and gaps in the literature and to suggest implications for future research and practice.

Results

Description of the Included Studies

Table 1 summarizes the study design, sample, main objectives, methods, and key findings of the 24 included publications. The studies underscoring the impact of ASD on parents in the Arab world were conducted in 10 countries. Among these publications, six were from Saudi Arabia, six were from Jordan, three were from Egypt, two were from Kuwait, two were from Bahrain, and one study was from Oman, Emirates, Palestine, Qatar, and Lebanon. The remaining Arab countries, namely, Algeria, Libya, Tunisia, Morocco, Mauritania, Sudan, Somalia, Djibouti, Yemen, Syria, Iraq, or Comoros, did not have any published articles.

Twenty publications (84%) were quantitative studies, which were mostly cross-sectional, while four publications (16%) were qualitative studies. The samples used in eight of the studies included only mothers (Obeid and Daou, 2015; Al-Kandari et al., 2017; Al-Ansari and Jahrami, 2018; Gobrial, 2018; Al Ansari et al., 2021; El-Monshed and Amr, 2021; Shattnawi et al., 2021; Lamba et al., 2022), while one study (Ahmad and Dardas, 2015) included only fathers.

Data Collection Tools

This review employed 19 different data collection tools including the World Health Organization Quality of Life Assessment (WHOQOL-BREF), the Depression, Anxiety and Stress Scale (DASS-21), the Perceived Stress Scale (PSS), the 36-Item Short Form Survey (SE-36), the Brief Version of the Coping Orientation to Problems Experienced Inventory (Brief -COPE), the Hospital Anxiety and Depression Scale (HADS), Oberst Caregiver Burden Scale time and difficulty subscales (OCBS-T and OCBS-D), Bakas Caregiving Outcome Scale (OCBS), Zarit Burden Interview (ZBI-12), Patient Health Questionnaire (PHQ)-9, Parenting Stress Index—Short Form (PSI—SF), Ways of Coping Checklist-Revised (WCC-R), Beck's Depression Inventory (BDI), the Standard Recall Short Form 36 (SF-36 v2), Family Stress and Coping Interview-Adapted Scale (FSCI-A), the Satisfaction with Life Scale (SWLS), Interpersonal Support Evaluation List (ISEL), General Health Questionnaire (GHQ-12), and the Positive Reappraisal Coping (PRC) Subscale of the Cognitive Emotion Regulation Questionnaire (CERQ).

The included studies were all published in the past 10 years and most of these studies (n = 16, 67%) were conducted between 2017 and 2021.

Participants in the Included Studies

In total, 3,299 parents or caregivers, namely, 2,415 parents or caregivers of children with ASD and 884 controls, were included as participants in these studies. The total number of mothers and fathers of children with ASD was 813 and 327, respectively. Eleven studies comprising 1,275 parents or caregivers of children with ASD did not specify the gender of the parent and referred only to the term “parents” (Kheir et al., 2012; Almansour et al., 2013; Fido and Al Saad, 2013; Al-Farsi et al., 2016; and Rayan and Ahmad, 2017; Al-qahtani, 2018; Alnazly and Abojedi, 2019; Alshekaili et al., 2019; Amireh, 2019; Alenazi et al., 2020; Khusaifan and El Keshky, 2021). All the studies used non-probability sampling methods (i.e., convenience samples, purposefully selected samples, snowball samples, and voluntary samples) except for one study which used a probability sample (a systematic random sample; Alshekaili et al., 2019).

Impact of ASD on Parents

Data from studies included in this review revealed that parents raising children with ASD in Arab countries experience considerable stress and strain. Nine studies reported high levels of parental stress (Dababnah and Parish, 2013; Dardas and Ahmad, 2014; Ahmad and Dardas, 2015; Al-Farsi et al., 2016; Rayan and Ahmad, 2017; Amireh, 2019; Al Ansari et al., 2021; El-Monshed and Amr, 2021; Khusaifan and El Keshky, 2021). Furthermore, depression symptoms were reported among parents in nine studies (Almansour et al., 2013; Dababnah and Parish, 2013; Fido and Al Saad, 2013; Al-Farsi et al., 2016; Rayan and Ahmad, 2017; Alnazly and Abojedi, 2019; Al Ansari et al., 2021; Alshahrani and Algashmari, 2021). Anxiety was experienced by parents in six studies (Almansour et al., 2013; Al-Farsi et al., 2016; Rayan and Ahmad, 2017; Alnazly and Abojedi, 2019; Al Ansari et al., 2021). Decreased QoL of parents was found in five studies (Kheir et al., 2012; Dardas and Ahmad, 2014; Ahmad and Dardas, 2015; Alenazi et al., 2020). Physical health problems were reported in two studies (Al-qahtani, 2018; Shattnawi et al., 2021). Five studies reported social burden among parents of children with ASD (Al-qahtani, 2018; Gobrial, 2018; Alenazi et al., 2020; Al-Masa'deh et al., 2020; Shattnawi et al., 2021), while four studies reported psychological burden (Dababnah and Parish, 2013; Al-Ansari and Jahrami, 2018; Al-qahtani, 2018; Shattnawi et al., 2021). Parents of children with ASD reported financial burden in three of the studies (Dababnah and Parish, 2013; Al-qahtani, 2018; Shattnawi et al., 2021).

Parents of Children With and Without ASD

In six studies, parents raising children with ASD were compared with parents raising children with other disabilities and children without any disabilities (Fido and Al Saad, 2013; Obeid and Daou, 2015; Al-Farsi et al., 2016; Al-Ansari and Jahrami, 2018; Amireh, 2019; Al Ansari et al., 2021). These studies were conducted in six Arab countries, namely, Bahrain, Oman, Saudi Arabia, Egypt, Kuwait, and Lebanon. The majority of these studies found that parents of children with ASD experienced higher levels of stress, reduced wellbeing, and other psychological difficulties compared to the controls. One study found that there were no significant differences between parents of children with ASD and controls in QoL or physical health (Al-Ansari and Jahrami, 2018). Furthermore, Fido and Al Saad (2013) found no significant differences in psychological distress between fathers of children with ASD and fathers of typically developing children. Only four studies made a comparison in parental stress among mothers and fathers of children with ASD. In two studies, no significant differences were found between the fathers and mothers of children with ASD in terms of depressive symptoms (Alshahrani and Algashmari, 2021), or physical, psychological, and social wellbeing (Dardas and Ahmad, 2014). However, two other studies reported that mothers experienced significantly higher levels of depressive symptoms (Al-Farsi et al., 2016) and impaired QOL in contrast to fathers (Alenazi et al., 2020).

Factors Associated With the Impact of ASD on Parents

Factors associated with psychological disorders and the burden experienced by parents of children with ASD were explored in some of the studies. These studies found that several factors were associated with the impact of ASD on parents, including the severity of ASD, social support, economic status, maternal education, financial hardship, marital status, parental age, and the gender of the child (Al-Kandari et al., 2017; Alnazly and Abojedi, 2019; Alshekaili et al., 2019; Al-Masa'deh et al., 2020; Alshahrani and Algashmari, 2021; Khusaifan and El Keshky, 2021).

Coping Strategies of Parents of Children With ASD

Limited studies have investigated coping strategies used by parents raising children with ASD in Arab countries. Religious coping was the most common coping strategy found in some of these studies (Dababnah and Parish, 2013; Al-Kandari et al., 2017; Amireh, 2019; Khusaifan and El Keshky, 2021). Other strategies used were acceptance, positive reframing, withdrawal from the community, denial of the ASD diagnosis, increasing social interactions, and accessing information.

Resilience in Parents of Children With ASD

Only two studies examined the psychological resilience of parents. Dababnah and Parish (2013) reported that Palestinian parents in the West Bank demonstrated remarkable resilience in raising children with ASD. Furthermore, Alshahrani and Algashmari (2021) found high levels of resilience among parents and caregivers of children with ASD in Saudi Arabia.

Discussion

This systematic review was conducted to identify studies that addressed the impact of ASD on parents in Arab countries. The included studies were reviewed in terms of participants, general characteristics, methodology used, and the main findings. This review found that the impact of ASD on parents and caregivers has only recently gained traction among researchers in some Arab countries. Approximately 80% of the studies included in this review were conducted in Saudi Arabia, Jordan, Egypt, Kuwait, and Bahrain. Most of these studies used cross-sectional study designs and included non-random samples. Furthermore, the study participants of the included studies comprised more mothers than fathers. Moreover, most of the included studies did not distinguish between the different subtypes of ASD.

The majority of studies found that ASD has a significant negative impact on the mental health and wellbeing of Arab parents. This finding is consistent with previous studies conducted in several countries, suggesting that parents of children with ASD experience significant levels of stress, depression, and anxiety (Loukisas and Papoudi, 2016; Reddy et al., 2019; Papadopoulos, 2021). Consistent with previous research, this review also showed that parents of children with ASD in Arab countries have poorer QoL (Lee et al., 2008; Vasilopoulou and Nisbet, 2016). Thus, parents of children with ASD face an increased risk of developing psychological disorders in contrast to parents of both typically developing children and children with other developmental disorders (Karst and Van Hecke, 2012; Schnabel et al., 2020; Papadopoulos, 2021). In addition, several studies found that these parents reported a high caregiver burden (e.g., Estes et al., 2013; Picardi et al., 2018).

Studies exploring the factors associated with stress in parents and caregivers of children with ASD are limited in Arab countries. These factors include the severity of ASD, social support, economic status, maternal education, financial hardship, marital status, parental age, and the gender of the child. Overall, these results are consistent with literature indicating a relationship between the impact of ASD on parents and various characteristics among the child and extended family (Karst and Van Hecke, 2012; Rivard et al., 2014; Iadarola et al., 2019).

Furthermore, studies addressing the coping strategies used by parents raising children with ASD are even more limited in Arab countries. Although limited, these studies found that the most common coping strategy used by parents was religious coping followed by acceptance, positive reframing, withdrawal from the community, denial of the ASD diagnosis, increasing social interactions, and accessing information. Moreover, two studies found high levels of resilience in parents and caregivers. However, since the studies are limited, these results should be interpreted with caution. Moreover, most of the studies used self-report questionnaires and lacked a qualitative measurement. As a result, socially desirable responses may have been provided by the parents and caregivers, underscoring the limitations of the data collection methods used.

The findings of this systematic review have several important implications for future research in Arab countries. Parents that have a child with ASD are severely impacted (Picardi et al., 2018). Despite the evidence provided by published studies about the impact of ASD on parents in Arab countries, there are still several knowledge gaps. For example, studies identified in this review provided minimal or no information about the impact of ASD on parental self-efficacy, physical health problems, marital relationships, or family socialization.

Furthermore, further research is required to underscore the difference in the experience of the burden associated with raising a child with ASD between mothers and fathers. While several studies have indicated that mothers of children with ASD suffer from increased levels of mental health challenges and burdens compared to fathers, some studies have yielded mixed results (Picardi et al., 2018; Al Khateeb et al., 2019; Rudelli et al., 2021). Thus, further research is required to enhance the understanding of the different challenges experienced by parents raising children with ASD in Arab countries, particularly qualitative studies (Leko et al., 2021).

Moreover, the majority of the studies included in this review used small non-random samples based on a limited number of countries. Consequently, this limited the generalizability of the findings to all parents in the Arab region. Thus, future research including larger random samples is required.

Limitations

Several limitations should be considered when interpreting the findings of the current review. First, only studies published in English in peer-reviewed journals were included in this review. The researchers excluded literature published in the Arabic language due to the severe lack of Arabic electronic databases. Furthermore, conducting a comprehensive manual search would have been a formidable task (Alkhateeb and Alhadidi, 2019). As a result, the included studies may not be representative of all the evidence (Morrison et al., 2012). Second, narrow search parameters were applied resulting in the exclusion of other potential sources of information such as conference papers and theses or dissertations that could uncover other relevant literature. Third, this review did not include a critical appraisal of the identified studies. Although the review was confined to studies published in peer-reviewed journals (71% of which had an Impact Factor >1.0), this does not necessarily guarantee the methodological quality of reviewed studies. Therefore, some of the included studies may be of low quality, warranting further research. Despite these limitations, this systematic review facilitates the understanding of the impact of ASD on parents in Arab countries.

Conclusion

This systematic review summarized the results of studies underscoring the impact of ASD on parents in Arab countries. Twenty-four studies met inclusion criteria and most of the included studies were quantitative studies that were conducted within the last 5 years in Saudi Arabia, Jordan, Egypt, Kuwait, and Bahrain. Furthermore, most of the identified studies found that ASD has a significant negative impact on the mental health and wellbeing of Arab parents. Moreover, significant gaps were found in the evidence base, including research on coping strategies and interventions aimed at reducing stress and burden among parents and caregivers. However, this review contributes valuable insights for future studies on parents of children with ASD in Arab countries.

Publisher's Note

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