Abstract
Introduction: Autism spectrum disorder (ASD) is a common and prevalent neurodevelopmental condition. While the impact of ASD on the child’s well-being is well-documented, there has been limited research on the impact of caring for an autistic child on the sleep patterns and quality of life (QoL) of parents and caregivers. This cross-sectional study aimed to investigate the effects of having an autistic child on the QoL and sleep patterns of parents and caregivers in Medina, Saudi Arabia.
Methods: The study used validated questionnaires to assess sleep quality and QoL, with a sample of 89 participants. The questionnaire was distributed among parents and caregivers of autistic children at local healthcare centers.
Result: The study revealed that the majority of respondents are mothers (70.8%), with children aged 5-7 years being the most common (39.3%), and 67.4% of children are males. Speech problems (47.2%) are the most prevalent issue among autistic children, followed by sleep disorders (20.2%), while a significant portion of parents experience anxiety symptoms (10.1%), depression symptoms (4.5%), and co-occurrence of depression and anxiety symptoms, seen in 5.6% of cases. Parents and caregivers of autistic children experienced moderate levels of sleep disturbance, as indicated by a mean Pittsburgh Sleep Quality Index (PSQI) score of 6.74 ± standard deviation 2.89, with 44.9% of respondents reporting not feeling rested.
Conclusion: The analysis of sleep quality and QoL measures highlighted significant challenges faced by the participants, emphasizing the need for comprehensive support strategies to address the well-being of families affected.
Keywords: autism spectrum disorder (asd), caregiver's mental health, quality of life (qol), quality of sleep, saudi arabia
Introduction
Autism spectrum disorder (ASD) is a frequently occurring, lifelong neurodevelopmental disorder marked by continuous difficulties with social communication, as well as by restricted and repetitive behaviors [1]. The global prevalence of ASD in children between two and four years old is estimated at one in 100 globally and 25 out of 1000 among Saudi children in Riyadh [2,3]. However, the manifestations of ASD are continuous and typically appear in the first three years of life. Clinical manifestations vary in presentation and severity between different patients; however, the majority of autistic children experience some continuous sleep difficulty, such as insomnia and circadian sleep-wake rhythm disorders (CSWRDs) [4]. The prevalence of sleep disorders in autistic children is estimated to be up to 86% compared to 25-40% in neurotypically developing (NT) children. Moreover, half of autistic children have at least one experience of sleep difficulty that appears to be chronic [5,6]. Consequently, parents of autistic children have a higher prevalence of reporting previous sleep difficulties of their children, which is estimated to be around 83% compared to 20-50% of parents of NT children [7]. These lifelong behaviors and sleep problems of autistic children have a negative impact on the quality of sleep (QoS) and psychological well-being of the parents [8]. The number of studies investigating the QoS among parents of autistic children compared to parents of NT children is limited; however, the studies that have been carried out found that parents of autistic children have poorer sleep quality than parents of NT children [9,10]. As was mentioned before, studies show that up to 83% of autistic children consistently experience sleep problems, and this may partially account for the poor sleep habits of parents of autistic children [9]. Inadequate sleep is linked to reduced capacity to control emotions, thoughts, and actions, which can lead to poor decision-making, distractibility, sluggish information processing, impatience, and impulsive behaviors, all of which cause stressful experiences [11]. There is strong evidence supporting the existence of a sleep-stress cycle; in particular, studies of the general population show that experiencing stress negatively impacts sleep quality, which in turn negatively impacts stress [12]. These sleep disturbances and behavioral difficulties not only affect stress levels among parents but also influence their overall quality of life (QoL), a multidimensional concept that reflects individuals’ perceptions of their life in relation to their goals, expectations, standards, and concerns. Therefore, these difficulties can be considered key predictors of parents' overall QoL [13-15].
This study is the first of its kind to have been carried out in Medina on parents and caregivers of autistic children and given the high incidence of autism in the Saudi population and the limited amount of research that has been carried out internationally. The study aims to assess how having an autistic child impacts the QOL and sleep of parents and caregivers.
Materials and methods
Study design and setting
This is an analytic cross-sectional questionnaire-based study. A self-administered online questionnaire was distributed among parents or caregivers of autistic children at child clinics of King Salman bin Abdulaziz Medical City (KSAMC) in Medina City who were registered in KSAMC’s electronic medical file. Only one response per participant was collected at a single point in time. Although the data collection occurred over a period of several months (from March to December 2023), this was due to logistical reasons related to recruitment and scheduling. No follow-up or repeated measures were conducted; therefore, the study remains cross-sectional in design.
Study population and sampling
The study population consisted of parents or caregivers of autistic children in Medina who were receiving care at centers in the city. The sampling method used was nonprobability convenience sampling. The aim was to obtain the maximum possible number of samples within the available population, based on available data indicating 128 child follow-ups. However, the actual sample size obtained was 89 participants. The inclusion criteria were parents of children diagnosed with ASD and main caregivers of autistic children, including siblings, grandparents, and other relevant caregivers. The inclusion criteria covered all nationalities. The exclusion criteria were parents of autistic children or their caregivers living outside Medina, and autistic children aged over 18 years. The dependent variable was parents and caregivers of autistic children, and the independent variables were QoL and QoS.
Data collection tool
A cross-sectional study was carried out using a self-administered electronic questionnaire (Google Form) distributed to parents of autistic children at the Developmental and Behavioral Disorders Center and Child Psychiatry Department at KSAMC and Taiba Medical Specialist Center in Medina City. We used the PubMed database to search for prior related studies using the keywords “quality of life,” “ASD,” and “quality of sleep,” filtering for studies published in the last five years in the Western region of Saudi Arabia. The study used a structured, validated self-administered online questionnaire designed by Google Forms in the Arabic language and distributed among parents and caregivers of autistic children at the Developmental and Behavioral Disorders Center and Child Psychiatry Department at KSAMC and Taiba Medical Specialist Center in Medina, using short message service (SMS) messages to collect the information. The questionnaire is divided into three sections based on closed-ended questions. The first section requested informed consent and focused on personal data of the child and caregiver, including sociodemographic data (consanguinity, age, gender, residency and current educational status of the autistic child, marital status of the parents, and income of the family); the child’s medical history (previous diagnoses of psychiatric/developmental disorder, current treatment status), and family history of the child (number of child siblings, previous psychiatric and medical diagnoses of siblings, previous psychiatric diagnoses of the child’s parents). The second section focuses on the Pittsburgh Sleep Quality Index (PSQI), which is a reliable method to assess the quality and quantity of sleep [16,17]. The third section concentrates on the QoL, which was measured using the Arabic version of the World Health Organization’s Quality of Life Brief Version Questionnaire (WHOQOL-BREF) [18,19].
Validity and reliability of the measurement instrument
We used a validated Arabic version of the PSQI, which is a 19-item self-reported questionnaire that asks for information on seven indicators of sleep, including subjective sleep quality, sleep latency, sleep length, habitual sleep efficiency, sleep disruption, use of sleeping pills, and daytime dysfunction, using a scale rated from 0 (no difficulty) to 3 (extreme difficulty, severe difficulty). Also, certain questions have particular arrangements from zero (not during the past month) to three (three or more times a week). A total sleep quality score that ranges from 0 (excellent sleep quality) to 21 (poor sleep quality) is derived by averaging component scores. The overall score that separates “good sleepers” from “poor sleepers” is the total of the scores on the seven subscales. The researchers utilized a cut-off of >5 on the overall PSQI score to differentiate between parents who were “excellent sleepers” and those who were “poor sleepers.” The PSQI has been verified with sufficient psychometric properties in more than 52 distinct languages. The PSQI’s psychometric performance was found to be satisfactory for the Arabic-speaking population in the current study [16,17]. Furthermore, the Arabic version of the WHOQOL-BREF instrument was used to ensure that patients could understand the questions. The WHO Quality of Life Questionnaire has 26 items. Items 1 and 2 can be used to examine a person’s perception of their general health and QoL. Items 3-26 represent four domains, which are subdivided into social relationships (three items), physical health (seven items), psychological health (six items), and environment (eight items). Responses for each item are on a scale of 1 to 5, with 1 indicating the lowest agreement and 5 indicating the highest agreement with that particular item. Items 3, 4, and 26 are negatively formulated and are turned around during analysis [18,19].
Data management and analysis plan
Statistical Analysis
An appropriate statistical analysis was performed using IBM SPSS Statistics for Windows, Version 26 (Released 2018; IBM Corp., Armonk, New York, United States) to calculate QoL and QoS levels. Other statistical analyses were carried out based on the preliminary results.
Data Collection
All participants were asked to fill in the questionnaire.
Method
We conducted tests for data distribution using both the Shapiro-Wilk and Kolmogorov-Smirnov tests. A data distribution was deemed normal if the p-value exceeded 0.05, leading to rejection of the null hypothesis. For quantitative variables, we utilized mean and standard deviation (SD) to provide descriptions, while nonparametric variables were characterized using median and interquartile range (IQR). Categorical variables were summarized using counts and percentages. Pearson's correlation was used to measure the correlation between normally distributed numerical variables. The Mann-Whitney U test and Kruskal-Wallis test were employed to compare the ranks of nonnormally distributed variables.
Ethical considerations
Ethical approval for the study was obtained from the ethical committee of KSAMC (Medina, Saudi Arabia) with IRB Number: IRB23-03 and also from Taibah University, IRB 00010143. Informed consent, in electronic form, was obtained from the participants after explaining the purpose of the research to them. They were informed that participation is voluntary and that all participants will have the option of withdrawing from the study at any time, and they were assured that refusal to participate or withdrawal would not affect the healthcare services provided to them. To ensure the privacy and confidentiality of participants, the data will be accessible only to the primary investigator and co-investigators.
Results
The “Relation to child” variable shows that mothers represent the majority of the sample, at 70.8%, while fathers constitute 29.2%. Regarding child age, the highest share is between five and seven years (39.3%). Regarding monthly income, nearly a quarter of the participants (25.8%) earn more than 10,000 SAR (approximately 2,667 USD), while a significant portion (22.5%) fall within the 7,500-10,000 SAR range (about 2,000-2,667 USD). In terms of child gender, males constitute 67.4% of the sample, whereas females represent 32.6%. The number of siblings varies, with the largest proportion having one or two siblings (47.2%). Regarding living arrangements, the majority (93.3%) reside with both parents, while only a small percentage live exclusively with either the father (1.1%) or mother (5.6%). Additionally, 11.2% of children do not attend school, and 39.3% follow a daily program (Table 1).
Table 1. Demographic characteristics of the studied population.
| Studied variable (n = 89) | N (%) | |
| Relation to child | Father | 26 (29.2%) |
| Mother | 63 (70.8%) | |
| Child age | Five years or less | 18 (20.2%) |
| 5-7 years | 35 (39.3%) | |
| 8-11 years | 23 (25.8%) | |
| 12-15 years | 6 (6.7%) | |
| 15-18 | 7 (7.9%) | |
| Monthly income | Less than 2500 SAR (less than 667 USD) | 13 (14.6%) |
| 2500-5000 SAR (approximately 667-1,333 USD) | 14 (15.7%) | |
| 5000-7500 SAR (approximately 1,333–2,000 USD) | 19 (21.3%) | |
| 7500-10000 SAR (approximately 2,000–2,667 USD) | 20 (22.5%) | |
| More than 10000 SAR (more than 2,667 USD) | 23 (25.8%) | |
| Child gender | Female | 29 (32.6%) |
| Male | 60 (67.4%) | |
| Number of siblings | One to two | 42 (47.2%) |
| Three to four | 30 (33.7%) | |
| Five to six | 8 (9.0%) | |
| More than six | 3 (3.4%) | |
| No siblings | 6 (6.7%) | |
| Living | Father | 1 (1.1%) |
| Mother | 5 (5.6%) | |
| Both parents | 83 (93.3%) | |
| Going to school | Do not go to school | 10 (11.2%) |
| Daily program | 35 (39.3%) | |
| Integration school | 13(14.6%) | |
| Rehabilitation schools | 29 (32.6%) | |
| Public schools | 5(6.0%) |
Figure 1 shows that speech difficulties emerge as the most prevalent problem, affecting 47.2% of autistic children, indicating a substantial challenge to communication development. Sleep difficulties, identified in 20.2% of cases, suggest a significant impact on sleep patterns and quality of rest. Mental retardation, depression, and anxiety symptoms were also notable, though less prevalent, affecting 9.0%, 6.7%, and 6.7% of autistic children, respectively.
Figure 1. Prevalence of associated mental and developmental disorders in autistic children.
Figure 2 provides insights into the prevalence of mental health problems among parents of autistic children. The data suggests that a majority, comprising 77.5%, report no identified mental health issues. However, anxiety symptoms emerge as the most prevalent condition among those who do report issues, affecting 10.1% of parents. Co-occurrence of depression and anxiety symptoms is observed in 5.6% of cases, while depression symptoms alone are reported by 4.5% of parents. Panic attack symptoms and strokes are relatively less common, each affecting 1.1% of parents.
Figure 2. The associated mental health problems among parents.
Figure 3 presents the prevalence of various conditions among siblings within the population. The majority, constituting 78.7%, do not report any identified conditions. However, among those who do report conditions, the absence of brothers is reported by 5.6% of respondents. Mental disorders and autism are each reported by 4.5% of siblings, indicating notable occurrence within this group. Attention deficit hyperactivity disorder (ADHD) and Down syndrome are each observed in 2.2% of cases, while bronchial asthma and cerebral palsy each affect 1.1% of siblings.
Figure 3. The associated health problems among siblings of the studied children.
As shown in Figure 4, participants were asked to report the types of treatment their autistic children were receiving. The most commonly utilized interventions included speech therapy and cognitive behavioral intervention, both reported by 55.1% of caregivers. These treatments focus on improving communication skills and behavior management. Less commonly used were medical treatments (7.9%), such as pharmacological support, and functional therapy (2.2%), aimed at enhancing daily living skills. These findings reflect current trends in ASD management.
Figure 4. Different treatment modalities that were provided to autistic children.
Most respondents (67.4%) reported having a bed partner, while a smaller percentage indicated having a partner in the same room but not in bed (20.2%), or in another room (5.6%). The frequency of loud snoring varied among respondents, with a significant portion (61.8%) reporting not experiencing loud snoring during the last month. Similarly, a majority (76.4%) reported not experiencing long pauses between breaths while asleep during the last month. Most respondents (67.4%) reported not experiencing leg twitching or jerking while sleeping during the last month, and 60.7% reported not experiencing episodes of disorientation or confusion during sleep during the last month. Finally, a significant portion of respondents (44.9%) reported not feeling rested during the last month (Table 2).
Table 2. Sleep habits and disturbances survey results: insights into bed partners, snoring, breathing patterns, and rest quality.
| Question (N = 89) | Responses | N(%) |
| Do you have a bed partner or roommate? | Partner in bed | 60 (67.4%) |
| No partner in bed or never share a room | 6 (6.7%) | |
| Partner in the room, not in bed | 18 (20.2%) | |
| Partner in another room | 5 (5.6%) | |
| Loud snoring | Less than once per week | 13 (14.6%) |
| 1-2 times per week | 9 (10.1%) | |
| Three times or more | 7 (7.9%) | |
| Not during the last month | 55 (61.8%) | |
| Long pauses between breaths while asleep | Less than once per week | 9 (10.1%) |
| 1-2 times per week | 4 (4.5%) | |
| Three times or more | 3 (3.4%) | |
| Not during the last month | 68 (76.4%) | |
| Legs twitching or jerking while you sleep | Less than once per week | 9 (10.1%) |
| 1-2 times per week | 10 (11.2%) | |
| Three times or more | 5 (5.6%) | |
| Not during the last month | 60 (67.4%) | |
| Episodes of disorientation or confusion during sleep | Less than once per week | 11 (12.4%) |
| 1-2 times per week | 10 (11.2%) | |
| Three times or more | 6 (6.7%) | |
| Not during the last month | 54 (60.7%) | |
| Feeling no rest | Less than once per week | 21 (23.6%) |
| 1-2 times per week | 10 (11.2%) | |
| Three times or more | 12 (13.5%) | |
| Not during the last month | 40 (44.9%) |
Table 3 shows the mean score of different domains of PSQI. Sleep efficiency shows a mean of 0.45 (SD +/-0.93). Similarly, sleep latency, sleep disturbance, and daytime dysfunction present moderate means of 1.44 (SD +/-0.72), 1.49 (SD +/-0.74), and 0.70 (SD +/-0.82). Sleep duration and use of sleep medication reveal means of 0.97 (SD +/-0.78) and 0.34 (SD +/-0.75). Sleep quality shows a mean of 1.36 (SD +/-1.00). The global PSQI score, with a mean of 6.74 (SD +/-2.89), indicates a moderate level of overall sleep disturbance in the sample.
Table 3. Analysis of sleep parameters: mean and variability across domains among parents of autistic children .
PSQI: Pittsburgh Sleep Quality Index; SD: standard deviation; Q1: first quartile; Q3: third quartile
Values are presented as n (%). (a) PSQI score. (b) SD. (c) Q1. (d) Q3
| Domains of sleep | Mean | SD(b) | Min | Max | Median | Q1(c) | Q3(d) |
| Sleep efficiency | 0.45 | 0.93 | 0.0 | 3.0 | 0.0 | 0.0 | 0.0 |
| Sleep latency | 1.44 | 0.72 | 0.0 | 2.0 | 2.0 | 1.0 | 2.0 |
| Sleep duration | 0.97 | 0.78 | 0.0 | 3.0 | 1.0 | 0.5 | 1.0 |
| Sleep disturbance | 1.49 | 0.74 | 0.0 | 3.0 | 1.0 | 1.0 | 2.0 |
| Use of sleep medication | 0.34 | 0.75 | 0.0 | 3.0 | 0.0 | 0.0 | 0.0 |
| Daytime dysfunction | 0.70 | 0.82 | 0.0 | 3.0 | 1.0 | 0.0 | 1.0 |
| Sleep quality | 1.36 | 1.00 | 0.0 | 3.0 | 1.0 | 1.0 | 2.0 |
| Global PSQI score(a) | 6.74 | 2.89 | 0.0 | 16.0 | 7.0 | 5.0 | 9.0 |
Figure 4 shows common health problems among autistic children: 3.37% had enuresis, 11.24% had dental caries, 12.36% complained of gastrointestinal (GIT) problems, and 16.85% had sensory problems.
Figure 5. Health problems among autistic children.
For QoL assessment (Table 4), participants report a mean score of 3.09 (SD +/-0.96), indicating a moderate level of perceived QoL. General health scores are slightly higher with a mean of 3.28 (SD +/-1.11), suggesting a relatively positive perception of overall health among participants. In specific domains, physical well-being demonstrates a mean of 56.94 (SD +/-20.98), indicating a moderately positive assessment, while psychological and social relations exhibit means of 51.50 (SD +/-18.15) and 51.12 (SD +/-28.13), respectively, indicating moderate levels of psychological and social well-being. The environment domain, with a mean of 48.10 (SD +/-18.70), indicates a moderate satisfaction level with environmental factors.
Table 4. Quality of life assessment: domain-specific analysis among parents of autistic children.
SD: standard deviation; (a) QoL: quality of life
Values are presented as n (%)
| Domains of QoL(a) | Mean | SD | Min | Max | Median | Q1 | Q3 |
| General QoL | 3.09 | 0.96 | 1.0 | 4.0 | 3.0 | 3.0 | 4.0 |
| General health | 3.28 | 1.11 | 1.0 | 5.0 | 4.0 | 2.0 | 4.0 |
| Physical | 56.94 | 20.98 | 10.7 | 96.4 | 60.7 | 42.9 | 71.4 |
| Psychological | 51.50 | 18.15 | 4.2 | 83.3 | 54.2 | 41.7 | 66.7 |
| Social relations | 51.12 | 28.13 | 0.0 | 100.0 | 58.3 | 25.0 | 75.0 |
| Environment | 48.10 | 18.70 | 0.0 | 87.5 | 50.0 | 37.5 | 62.5 |
Regarding sleep quality across age, sex of the child, and relation of the caregiver, whether father or mother, male or female, the data showed that there were no statistically significant differences with p-values > 0.05.
Regarding the QoL across age, sex of the child, and the relationship of the caregiver, whether father or mother, male or female. The study found that there were no statistically significant differences, with all p-values > 0.05.
Discussion
The current study sheds light on the effect of multiple life aspects of autistic children on their caregivers’ QoL and QoS. Previous research showed that in most cases, the primary caregivers of autistic children were mothers, reflecting demographic characteristics of the population [13]. This finding is consistent with our findings that most caregivers (70.8%) were mothers. The gender gap in caregiving obligations may be ascribed to cultural norms and expectations, as well as the greater frequency of ASD among male children (67.4%) in the sample, which aligns with the well-established gender disparity in ASD diagnosis [20].
According to the study, speech issues were the most common additional condition observed in autistic children, affecting 47.2% of them. Sleep abnormalities were the second most prevalent, affecting 20.2% of the children. The results of this study align with previous research that has emphasized the elevated prevalence of communication challenges and sleep disruptions in autistic children [4,6]. Deficiencies in communication can significantly impact a child’s ability to explain their needs, interact with others, and engage in daily activities, which can lead to increased stress and frustration for both the child and their caregivers [21]. Autistic children may exhibit worsening of their behavioral and emotional difficulties if they experience sleep disturbances such as sleeplessness and issues with the body’s natural sleep-wake cycle [4]. Furthermore, according to Herrmann, these disturbances can also result in sleep deprivation and fatigue among the parents of autistic children [5].
Approximately 77.5% of parents indicated that they did not have any discernible mental health issues. The most prevalent mental health difficulties reported in the study population were anxiety symptoms, which affected 10.1% of individuals. Additionally, 5.6% of the sample reported the co-occurrence of depression and anxiety symptoms, while 4.5% reported depressive symptoms alone.
The results emphasize the considerable emotional burden of taking care of an autistic child, as well as the heightened likelihood of parents and caregivers developing mental health difficulties. Persistent stress, which can emerge as anxiety and depression symptoms, can be caused by several factors, including the responsibilities of maintaining continual monitoring, addressing problematic behaviors, and navigating sophisticated healthcare and educational systems [18,22]. Furthermore, social disapproval and isolation that are associated with autistic children may exacerbate the feelings of isolation and psychological suffering that their parents experience [12].
The analysis of sleep parameters revealed that parents had moderate levels of sleep disturbance, as evidenced by a mean PSQI score of 6.74 (SD +/- 2.89). This finding corroborates previous research that discovered lower sleep quality in parents of autistic children compared to parents of typically developing children [9-10]. Autistic children often have sleep disturbances, including trouble falling asleep, frequent awakenings during the night, and waking up early in the morning. According to a previous study, these interruptions might interfere with parents’ sleep habits and lead to sleep deprivation over a more extended period [6]. Inadequate sleep can substantially influence parents’ physical health, cognitive ability, and emotional control, reducing their capacity to bear parenting obligations and increasing the amount of stress that they experience [12,23].
The QoL survey indicated moderate levels of well-being in several aspects. Among these, physical well-being had the highest rating, 56.94 (SD +/- 20.98), while the environment had the lowest score, 48.10 (SD +/- 18.70). The results suggest that even if parents have good physical health, taking care of an autistic child may negatively affect their emotional, social, and environmental well-being [14,24-25]. The low scores in the environment domain may indicate the challenges parents have in accessing suitable resources, accommodation, and support in their communities, as well as the financial strain of caring for an autistic child [13]. According to Mihaila and Hartley, average scores in the domains of psychological and social connection can be taken as an indicator of the emotional and social implications of ASD for parents. These effects include feelings of isolation, stigma, and strain in relationships [8].
The study's findings revealed no statistically significant changes in QoL or sleep quality associated with demographic data, including age, child's gender, or caregiver connection (father or mother). This might suggest that different subgroups of parents and caregivers experience the same difficulties and results when they are caring for an autistic child. Nevertheless, it is essential to recognize that individual experiences might differ significantly. According to the qualitative interviews done in this Riyadh study, the obstacles faced by these caregivers of autistic children ranged from interpersonal to economic, social, institutional, and psychological [25].
Limitations and recommendations
This study has certain limitations, primarily due to the sample size, which was informed by the available population data from the developmental disorder center at KSAMC, where 128 children receive follow-up care. Conducting research within this specific population posed challenges, including limited accessibility to participants and time constraints, especially given the scarcity of developmental centers in Medina. We were ultimately able to include 89 participants, which, while modest, provides preliminary insights into the QoL and sleep patterns of parents and caregivers of autistic children in Medina. Additionally, this study relied on self-reported questionnaires, which, despite being validated and widely used, may be subject to recall bias and subjectivity. The ASD diagnoses were made by qualified clinicians based on the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5 criteria); however, gold-standard diagnostic tools such as the Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R) were not consistently used, and ASD severity was not assessed. Objective sleep assessments, such as actigraphy or polysomnography, were also not incorporated. Future studies should consider longitudinal designs including standardized diagnostic instruments, ASD severity stratification, and objective sleep measures to provide a more comprehensive understanding of the long-term impact of ASD on caregiver well-being.
Conclusions
This study examines the impact of having an autistic child on the QoL and sleep quality of parents and caregivers in the city of Medina in Saudi Arabia. The results suggest that parents, especially mothers, of autistic children have substantial challenges, including low sleep quality and psychological strain. The issues are exacerbated by the behavioral and sleep difficulties often associated with ASD, leading to a greater prevalence of sleep disorders among parents of autistic children compared to parents of NT children. The study highlights the need for customized treatments and support systems to reduce stress and improve the QoS for parents of autistic children. This is crucial not just for the parents’ welfare but also for the appropriate nurturing and supervision of their children.
Acknowledgments
Our sincere thanks to the King Salman bin Abdulaziz Medical City (KSAMC), Medina, Saudi Arabia, for their assistance in providing access to the facilities and resources necessary for this research.
Disclosures
Human subjects: Informed consent for treatment and open access publication was obtained or waived by all participants in this study. Ethical Committee of Taibah University issued approval IRB 00010143.
Animal subjects: All authors have confirmed that this study did not involve animal subjects or tissue.
Conflicts of interest: In compliance with the ICMJE uniform disclosure form, all authors declare the following:
Payment/services info: All authors have declared that no financial support was received from any organization for the submitted work.
Financial relationships: All authors have declared that they have no financial relationships at present or within the previous three years with any organizations that might have an interest in the submitted work.
Other relationships: All authors have declared that there are no other relationships or activities that could appear to have influenced the submitted work.
Author Contributions
Concept and design: Ramzi Alsheraimi, Abeer Al-Lihabi, Marwa Alofi, Shouq T. Alharbi, Abdulrahman M. Alharbi
Acquisition, analysis, or interpretation of data: Ramzi Alsheraimi, Shouq T. Alharbi, Abdulrahman M. Alharbi, Shurouq Azouni, Anfal Albaidani
Drafting of the manuscript: Ramzi Alsheraimi, Abeer Al-Lihabi, Shouq T. Alharbi, Abdulrahman M. Alharbi, Shurouq Azouni, Anfal Albaidani
Critical review of the manuscript for important intellectual content: Ramzi Alsheraimi, Abeer Al-Lihabi, Marwa Alofi, Shouq T. Alharbi, Abdulrahman M. Alharbi, Shurouq Azouni, Anfal Albaidani
Supervision: Abeer Al-Lihabi
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