Assessing the Burden and Coping Strategies of Parents of Adolescents with the Autism Spectrum Disorder

Assessing the Burden and Coping Strategies of Parents of Adolescents with the Autism Spectrum Disorder | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Assessing the Burden and Coping Strategies of Parents of Adolescents with the Autism Spectrum Disorder Cherif Farah, Nadia Bouattour, Rabeb Jbir, Guermazi Fatma, Ines Feki, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7199865/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Adolescence is a unique life stage, both for the teenagers, facing physical and mental changes, and for their parents who must deal with the challenges related to their child's development and the disorder. This period, can represent a burden leading to exhaustion and deterioration of their psychological health. We aimed to assess the level of burden and coping strategies adopted by the parents and to investigate the associated factors. We conducted a cross-sectional study among parents of adolescents with autism spectrum disorder. The questionnaire collected sociodemographic information for both parents and adolescents, and included the Zarit Burden Inventory to assess caregiver burden as well as the Brief‑COPE to evaluate coping strategies. We included 43 parents with an average age of 50.6 years. Mothers represented 86% of the respondent (n = 37). The average age of the adolescents was 17.79 years. Male adolescents were predominant (sex ratio = 3.7). The parental burden was severely intense in 62.8% of the respondents. The burden was significantly associated to parents suffering from at least one somatic illness (p = 0.03) and those with more than two children (p = 0.02). Sibling rivalry was associated to severe level of burden (p = 0.04). Emotion-focused coping was the most commonly used mechanism by parents, followed by problem-focused coping and social support. A significant association was found between the level of burden and the humor-based coping mechanism (p = 0.02). Our findings highlight the necessity of supporting parents of adolescents with autism spectrum disorder to alleviate their caregiving burden and enhance their coping strategies. Parent Adolescent Autism Spectrum Disorder Burden Coping 1. Introduction The autism spectrum disorder (ASD) is a neurodevelopmental disorder that appears since early childhood. The diagnosis is based on the association of two clinical characteristics: the alteration of social communication domain, and the limited and repetitive character of behavior, activities and interests [ 1 , 2 ]. Adolescence, for young people with ASD is a particular life stage, for these young people facing physical, biological and mental changes, and for their parents, who have to cope with the challenges related to their child's development. Parents play a fundamental caregiving role for these teenagers, requiring increased availability, effort, social support, and financial resources [ 3 ]. These factors can disrupt family routines and adversely affect caregivers’ physical and mental health [ 4 ]. The effect of these different stressors on caregivers is called burden [ 3 , 5 ]. Burden is defined as “all the physical, psychological, emotional, social and financial consequences borne by caregivers” [ 6 ]. To cope with this burden and manage the daily challenges associated with parenting an adolescent with ASD, parents rely on various coping strategies. Given the crucial role of parental psychological health in caregiving for adolescents with ASD, we conducted this study to assess parents’ levels of burden and the coping strategies they adopt, as well as to identify factors associated with both. 2. Methods This is a cross-sectional, descriptive, and analytical study conducted via a survey during the month of May 2024. It involved parents of adolescents with ASD who were receiving care at the Erraihan therapeutic farm in Sfax, Tunisia. The Erraihan therapeutic farm is a center run by the Ibn-Sina association. It provides daytime services for adolescents aged 13 and over with ASD. 2.1 Study design and participants We included parents of children diagnosed with autism according to DSM-5 diagnostic criteria, aged between 13 and 20 years old, who had regular contact with the adolescent for at least ten hours per week. We excluded parents with limited intellectual abilities or severe psychiatric disorders that prevented them from understanding the questions, as well as those who did not provide informed consent. 2.2 Data collection The questionnaire was administered following an invitation to parents by the center director. For each adolescent, only one parent (father or mother) responded to the questionnaire. This work was carried out while ensuring the anonymity of the participants. The evaluation was based on: -The Assessment of socio-biographical characteristics. -A structured, hetero-questionnaire was conducted using a pre-established form by the same investigating physician to collect data on both the parent and adolescent. Psychometric assessment was then performed using validated scales: The “Zarit Burden Inventory” 12-item scale in its Arabic version- was used [7]. This instrument evaluates the impact of the disease on the caregiver's quality of life: psychological and moral suffering, financial difficulties, shame, difficulties in social and family relationships, and guilt [8]. Each item is scored on a 5-point Likert scale (0 = “never” to 4 = “nearly always”). The total score is obtained by adding up the scores for the 12 items. Total scores range from 0 to 48, with higher scores indicating greater caregiver burden This score allows the burden to be classified according to the following interpretation: 0-10: no burden or slight burden Between 10 and 20: slight to moderate burden > 20: severe burden. Participants with scores corresponding to ‘no to mild burden’ and ‘mild to moderate burden’ were combined into a single category, termed the 'no to moderate burden' group. The “Brief-COPE” scale: In our study, we used the Arabic version of the Brief-COPE [9]. It is a multidimensional measurement tool that assesses 14 commonly used coping strategies for dealing with stress according to 14 scales, each with two items. The scales of the tool refer to the following four coping mechanisms: Problem-focused mechanisms: planning and active suppression. Avoidance-focused mechanisms: behavioral disengagement, denial, substance use, mental disengagement (distraction). Social support-focused mechanisms: seeking instrumental social support, seeking emotional social support, expressing feelings. Emotion-focused mechanisms: positive reinterpretation, humor, acceptance, religion, blame. The 28 items are rated on a scale from 1 (not at all) to 4 (very much). The responses obtained are added up for each scale. Higher scores on a scale indicate increased use of that coping mechanism. 2.3 Statistical data analysis The statistical analysis was performed using Statistical Package for Social Sciences (SPSS 20) software for Windows. Quantitative variables were expressed as means and standard deviations, while qualitative variables as frequencies. Associations between categorical variables were evaluated using Pearson’s chi-square (χ²) test, or Fisher’s exact test when expected cell frequencies were less than five. Comparisons of means were conducted using Student's t-test. The difference between results was considered significant for p< 0.05. 3. Results 2.1 Descriptive analysis A total of 43 parents of adolescents with ASD were included in our study, including 37 mothers (86%) and six fathers (14%). The average age of the parents surveyed was 50.6 years (min=36; max=81; and standard deviation=7.93) (Table I), and 33 lived as a couple. The majority lived in urban areas (n=34; 79.1%), and 17 (39.5%) had a higher education level. Fourteen parents (32.6%) suffered from at least one chronic illness. More than half of the parents (55.8%) reported sibling rivalry. For the adolescent group, males were predominant in the studied population, with 79.1% (n=34), and had an average age of 17.79 years (min=13, max=20 years). The adolescents had siblings in 97.1% of cases. They were the eldest in 48.8% of cases, the middle child in 23.3% of cases, and the youngest in 24.9% of cases. A history of somatic disorders was found in 44.2% of adolescents (n=19). These included epilepsy (n=17), hemophilia (n=1), and blindness (n=1). Psychiatric comorbidity was found in 55.8% of adolescents: mental retardation (n=22) and psychosis (n=2). Regarding diagnosis, the average age of adolescents at the first consultation was 1 year and 6 months (min=1 year and max=4 years). The age of the adolescent at the time of diagnosis ranged from 3 to 6 years, with an average of 3 years and 3 months. The time to treatment ranged from 0 to 24 months, with an average of 5 months. Twenty-three adolescents (53.5%) communicated using speech that was difficult to understand. The majority of adolescents (72.1%) exhibited behavioral disorders. These disorders included auto- and/or hetero-aggression, disruptive masturbatory behaviors, and debilitating stereotypies. Sphincter control had been achieved in 69.8% of adolescents. Almost half of the adolescents in the study, 44.2%, had attended kindergarten at an early age, and only 14% had begun formal schooling. At the time of the study, none of the participants were enrolled in school. Medication was prescribed in 62.8% of cases. The molecules prescribed were mainly risperidone (44.2%), chlorpromazine (16.3%), and promethazine (11.6%). Table I: Sociodemographic characteristics of parents Number Frequency % Gender Female Male 37 6 86 14 Geographic Origin Urban Rural 34 9 79.1 20.9 Educational level Illiteracy Primary Secondary High 2 12 12 17 4.7 27.9 27.9 39.5 Socioeconomic status Low Medium High 7 33 3 16.3 76.7 7 Professional status Active Inactive 23 22 51.2 48.8 Marital status Married Divorced Widow(er) 33 4 6 76.7 9.3 14 Number of kids in the family One Two Three Four Five 4 21 14 2 2 9.3 48.8 32.6 4.7 4.7 The average burden score according to the Zarit scale was 24.6, with extremes ranging from 0 to 48 and a standard deviation of 20.14. In our population, 62.80% of the parents surveyed had a severe burden. The study of coping strategies among parents using the Brief-COPE revealed that emotion focus (average score = 2.54, see table) was the coping mechanism most used by parents, followed by problem focus (average score = 2.50) and then social support (average score = 2.45). Avoidance was the least used coping mechanism (average score = 1.63). (Table II) Table II: Mean score of the coping mechanisms adopted by parents according to the Brief Coping Inventory Strategy Mean score Standard deviation Emotion focused coping 2 .54 0.78 Acceptance Religion Positive Reframing Self-blame Humor 2.87 3.23 2.58 2.24 1.79 0.87 0.85 0.85 0.90 0.83 Problem Focused strategies 2.50 0.38 Planning Active Coping 2.96 2.31 0.86 0.85 Social Support 2.45 0.63 Instrumental Support Emotional Support Venting 2.59 2.54 2.23 0.93 0.89 0.86 Dysfunctional Strategies 1.63 0.35 Self-Distraction Behavioral Disengagement Denial Substance Abuse 1.95 1.84 1.67 1.06 0.72 0.86 0.84 0.38 3.2 Analytical study 3.2.1 Relationship between parental characteristics and level of burden In our study, severe burden level was significantly associated with the parent’s history of at least one somatic illness (p=0.03). Similarly, a severe level of burden was significantly associated with having more than two children in the family (p=0.02) and the presence of sibling rivalry (p=0.04) (Table III). We found no statistical association between the level of burden and the following parental characteristics: age, gender, marital status and professional status. Table III: Relationship between parental characteristics and level of burden Level of burden P Absent to moderate Severe Mean age of the mothers (SD) Mean age of the fathers (SD) 46.62yo (7.7) 56.79yo (7.25) 49.79yo (4.92) 59.78yo (7.3) 0.99 Interrogated parent Father Mother 33.3% 37.8% 66.7% 62.2% 0.82 Marital Status Married Divorced 40.6% 27.3% 59.4% 72.7% 0.42 Professional Status Active Inactive 31.8% 42.9% 68.2% 57.1% 0.45 History of somatic illness Yes No 28.6% 41.4% 71.4% 58.6% 0.03 Number of kids >2 Yes No 36% 38.9% 64% 61.1% 0.02 Fraternal rivalry Yes No 44.4% 75% 55.6% 25% 0.04 SD: standard deviation 3.2.2 Relationship between the sociodemographic characteristics of the adolescent and the level of burden felt by the parent The level of severe burden was significantly associated with the male gender of the adolescent with ASD (p=0.03) and their rank as the eldest sibling (p=0.01) (Table IV). Table IV: Relationship between adolescents sociodemographic characteristics and the level of burden on parents Level of burden P Absent to moderate Severe Mean age (SD) 18.25 yo (2.35) 17.67 yo (2.07) 0.4 Gender Male Female 35.3% 44.4% 64.7% 55.6% 0.01 The eldest sibling No Yes 40.9% 33.3% 59.1% 66.7% 0.04 SD: standard deviation 3.2.3 Link between the clinical and therapeutic characteristics of the adolescent and the level of burden on the parent The presence of a severe burden in parents was significantly associated with the presence of self-harming behavioral disorders in adolescents (p=0.02). With regard to therapeutic characteristics, the use of risperidone and sodium valproate was significantly associated with an absent to moderate level of burden, with p=0.01 for both cases. Similarly, the adolescent's previous integration into school was significantly associated with an absent to moderate level of burden in the parent (p=0.01). 3.2.4 Relationship between the level of burden and the coping mechanisms used by the parent In our study, no significant association was found between overall parent burden and the range of coping mechanisms used, except for humor-based coping, which showed a statistically significant association (p = 0.02; Table V). Parents who use humor-based coping mechanisms reported burden levels ranging from absent to moderate, while those who do not use it reported a more severe level of burden. Table V: Correlations between burden level and average coping mechanism scores among parents Coping Mechanism Level of Burden P Absent to moderate Severe Emotion focused coping 2.50 2.56 0.7 Acceptance Religion Positive Reframing Self-blame Humor 3.03 3.18 2.62 2.12 1.98 2.77 3.25 2.55 2.25 1.41 0.89 0.79 0.88 0.81 0.02 Problem Focused strategies 2.59 2.45 0.51 Planning Active Coping 2.71 2.46 2.68 2.22 0.09 0.36 Social Support 2.47 2.44 0.88 Instrumental Support Emotional Support Venting 2.61 2.62 2.22 2.56 2.5 2.25 0.87 0.66 0.94 Dysfunctional Strategies 1.65 1.62 0.8 Self-Distraction Behavioral Disengagement Denial Substance Abuse 1.96 1.37 1.71 1 1.97 1.34 1.64 1.11 0.91 0.77 0.79 0.52 4. Discussion 4.1 Evaluation of the level of burden In our study, the mean caregiver burden score—measured using the 12-item Zarit Burden Interview—was 24.6 (SD 20.14). A severe burden level was observed in 62.8% of cases. This is consistent with the findings of Roper et al. [ 10 ], which highlight that parents of children with (ASD) experience a greater caregiver burden compared to parents of typically developing children. Furthermore, adolescence is a period of major changes, causing concern for both adolescents with ASD and their families. Consequently, these families face a double challenge: navigating typical adolescent developmental tasks while concurrently supporting their child’s ASD-related. Our study fits within this context, illustrating the extent of the parental burden and gender-specific issues in the care of adolescents with ASD. Several authors have examined the experiences and concerns of parents during this period [ 11 ]. According to Gillberg [ 12 ], the main concern of parents of adolescents with ASD during puberty is that their child's behavior may be misinterpreted as sexual. In addition, parents of boys with autism fear that their sons may be abused by someone of the same sex, while parents of girls with autism fear that their daughters may be abused by someone of the opposite sex. Research also indicates significant differences between the experiences of mothers and fathers. The work of Jones et al. [ 13 ] and Bitsika et al. [ 14 ] show that mothers are more likely to be affected psychologically, with higher levels of stress, anxiety, and depression than fathers. In fact, mothers push themselves harder and seem to feel the burden more intensely. In his qualitative study on the differences between fathers and mothers of children with ASD, Gray [ 15 ] highlighted the fact that mothers often sacrificed themselves to care for their child and associated this role with an intense and sometimes disproportionate burden. In our study, parents with at least one chronic somatic illness were more likely to experience severe burden (p = 0.03). In fact, a chronic illness itself contributes to burden, which is further compounded by the demands of caregiving. This finding aligns with previous research showing that caregivers of individuals with chronic conditions report significantly higher burden, poorer health, and increased emotional strain than their counterparts without chronic illness [ 16 , 17 ]. This link appears to be bidirectional. On the one hand. the stress caused by the burden of caregiving seems to have negative effects on the caregiver's physical health [ 18 ]. These effects include high blood pressure and increased cardiovascular reactivity. On the other hand, caregivers who are overwhelmed by caregiving may neglect their own health, forget their medical appointments, and stop taking care of themselves [ 19 ]. In addition, characteristics inherent to adolescents seem to influence this burden. In our study, a significant association was found between the level of burden and the presence of self-harming behavioral disorders in adolescents (p = 0.02). This is consistent with data from the literature. Studies have shown that the severity of behavioral disorders, their unpredictability, and their violence help explain the specific nature of the significant difficulties observed in these families, compared to those with a child with Down syndrome or Fragile X syndrome [ 20 , 21 ]. With regard to therapeutic characteristics, parents of adolescents receiving risperidone or sodium valproate had a significantly lower level of burden (p = 0.01 in both cases). Both medications are known for their effectiveness in managing behavioral disorders commonly associated with autism such as irritability, aggression, hyperactivity, and stereotypy [ 22 , 23 ], thereby reducing parental stress and burden. Our results contrast with those of Émilie Cappe et al [ 24 ], who reported that parents of children receiving pharmacological treatment exhibit lower satisfaction and poorer quality of life than those whose children are not medicated. For them, these prescriptions are intended to alleviate serious behavioral disorders. Consequently, it would be obvious that these children had violent behaviors that were more difficult to manage on a daily basis for everyone living with them or working with them. 4.2 Coping strategies adopted by parents Focusing on emotions (average score = 2.54) was the coping mechanism most used by parents. followed by focusing on the problem (average score = 2.50) and then social support (average score = 2.45). Avoidance was the least used coping mechanism (average score = 1.63). These results are consistent with those in the literature, since “emotion-focused coping” followed by “problem-focused coping” and then “seeking social support” were the coping mechanisms most commonly adopted by parents [ 24 , 25 ]. However, a study similar to ours in terms of female predominance highlighted the preferential use by mothers of strategies focused on religion, emotions, and seeking social support [ 26 ]. Religion was the most commonly used coping strategy within the emotion-focused mechanism, with the highest average among the various coping mechanisms. Some authors have demonstrated the protective effect of religious practices on family caregivers' perception of burden [ 27 ]. Indeed, for some spirituality is a source of hope and courage and a refuge that helps to reduce the level of burden felt. 4.3 Link between parental burden and coping strategies adopted Many researchers have examined the factors that predict well-being and adjustment in these parents. One commonly studied coping strategy is the use of social support, which is typically defined as the perceived availability of assistance from family and friends. A Canadian study involving 283 mothers of children with ASD suggest that high levels of social support are associated with lower levels of parental stress [ 28 ]. In our study, only the emotion-focused coping strategy of humor was significantly more prevalent among parents with no or moderate levels of burden compared to those with severe burden (1.98 versus 1.41; p = 0.02). In other words, parents who used more frequently emotion-focused coping strategies involving humor had significantly lower levels of burden. This strategy may help them gain psychological distance from stressful situations and promote a positive perception. For other coping strategies. no significant association was found with the level of burden. which is consistent with the results of an Iranian study published in 2023 [ 25 ] where no significant relationship was found between the level of burden and the coping mechanism. In our study, social support scores were similar between parents with no or moderate burden and those with severe burden. This lack of significance regarding social support can be explained by the family and social stigma felt due to the violence and suddenness of the adolescent's behavioral disorders. Ultimately, ASD would generate a great deal of stigma for the parent, further overwhelming them and creating an even more severe burden. They avoid talking about the condition with those around them. expressing their feelings, or asking for support, for fear of suffering this stigma. This vicious circle in which the caregiver finds themselves may partly explain the lack of correlation between the level of burden and coping strategies focused on social support in our study [ 29 ]. 5. Conclusion In conclusion, it is essential to recognize that the burden experienced by parents of adolescents with autism spectrum disorder (ASD) is complex and multidimensional. The results highlight the importance of promoting coping strategies among parents of adolescents with autism. Holistic care, which includes support for both parents and adolescents, is essential to improving the quality of life of families affected by ASD. As such, targeted interventions should be promoted that take into account the specificities of the parental experience and the individual needs of each family, while strengthening access to adequate resources to better cope with daily challenges. It is therefore legitimate to pay more attention to parents of adolescents with ASD in order to lighten their burden, enable them to better adapt to this role with the aim of optimizing the quality of care for these adolescents, and flourish in their parental role while supporting their adolescent's development. Declarations Ethics statement This study received approval from the Ethics Committee of the University of Medicine of Sfax, Tunisia. All participants were fully informed about the purpose, procedures, benefits, and potential risks of the research, and parental consent was obtained for participation. Participation was entirely voluntary, and confidentiality and anonymity of responses were maintained throughout. Participants were informed of their right to withdraw from the study at any time without any consequences. Data collection and analysis were conducted in accordance with ethical principles, including respect for persons, beneficence and justice, with particular care taken to communicate in clear, accessible language suited to the study population. We certify that the study was performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. Compliance with Ethical Standards Funding No funding was received to assist with the preparation of this manuscript. Competing interests The authors declare that they have no competing interests. Ethics approval and consent to participate Written informed consent to participate was obtained from all adult participants prior to enrollment. We certify that the study was performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. Patient consent Informed consent was obtained from all individual participants included in the study. Additional informed consent was obtained from all individual participants for whom identifying information is included in this article. Availability of data and materials The authors confirm that the data supporting the findings of this study are available within the article and/or its Supplementary Materials. If you need any additional information or data, please feel free to contact us. References Crocq M-A. Guelfi JD. DSM-5 : manuel diagnostique et statistique des troubles mentaux - Bibliothèque médicale du CHU de Québec-Université Laval. 5e éd. Issy-les-Moulineaux: Elsevier Masson. 2015. Greer JMH. Sood SSM. Metcalfe DR. Perceptions of autism spectrum disorder among the Swahili community on the Kenyan coast. Research in Developmental Disabilities 2022;131:104370. https://doi.org/10.1016/j.ridd.2022.104370. Deeken JF. Taylor KL. Mangan P. Yabroff KR. Ingham JM. 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Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism 2017;21:155–66. https://doi.org/10.1177/1362361316633033. Danko M. Perception et vécu subjectif de stigmatisation familiale chez le proche aidant d’une personne ayant reçu le diagnostic de maladie d’Alzheimer (MA). Université Paul Valery Montpellier III. 2017. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7199865","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":490205642,"identity":"16fd6220-758b-45b9-a20e-a3224ba15fca","order_by":0,"name":"Cherif Farah","email":"data:image/png;base64,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","orcid":"","institution":"Hedi Chaker Teaching Hospital","correspondingAuthor":true,"prefix":"","firstName":"Cherif","middleName":"","lastName":"Farah","suffix":""},{"id":490205644,"identity":"6e3570fc-8e1d-443d-a24b-d13763afd3ea","order_by":1,"name":"Nadia Bouattour","email":"","orcid":"","institution":"Hedi Chaker Teaching Hospital","correspondingAuthor":false,"prefix":"","firstName":"Nadia","middleName":"","lastName":"Bouattour","suffix":""},{"id":490205646,"identity":"15c1100f-acd4-4a3a-bdeb-bfd4f28429b2","order_by":2,"name":"Rabeb Jbir","email":"","orcid":"","institution":"Hedi Chaker Teaching Hospital","correspondingAuthor":false,"prefix":"","firstName":"Rabeb","middleName":"","lastName":"Jbir","suffix":""},{"id":490205647,"identity":"1ee5e4b8-cac5-4cc1-8669-f8a4b7c5ad5b","order_by":3,"name":"Guermazi Fatma","email":"","orcid":"","institution":"Hedi Chaker Teaching Hospital","correspondingAuthor":false,"prefix":"","firstName":"Guermazi","middleName":"","lastName":"Fatma","suffix":""},{"id":490205648,"identity":"d5aeffbb-6139-4631-875a-43bcc5409901","order_by":4,"name":"Ines Feki","email":"","orcid":"","institution":"Hedi Chaker Teaching Hospital","correspondingAuthor":false,"prefix":"","firstName":"Ines","middleName":"","lastName":"Feki","suffix":""},{"id":490205649,"identity":"abcdd480-d3a2-4ca9-8f24-f0de134df73f","order_by":5,"name":"Jawaher Boudabbous","email":"","orcid":"","institution":"Hedi Chaker Teaching Hospital","correspondingAuthor":false,"prefix":"","firstName":"Jawaher","middleName":"","lastName":"Boudabbous","suffix":""},{"id":490205650,"identity":"fe043d26-8b96-4a87-9e7d-930ca438607f","order_by":6,"name":"Rim Masmoudi","email":"","orcid":"","institution":"Hedi Chaker Teaching Hospital","correspondingAuthor":false,"prefix":"","firstName":"Rim","middleName":"","lastName":"Masmoudi","suffix":""},{"id":490205651,"identity":"633d61c5-3ac8-43a0-af74-f34d02be5a04","order_by":7,"name":"Jawaher Masmoudi","email":"","orcid":"","institution":"Hedi Chaker Teaching Hospital","correspondingAuthor":false,"prefix":"","firstName":"Jawaher","middleName":"","lastName":"Masmoudi","suffix":""}],"badges":[],"createdAt":"2025-07-23 22:08:16","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7199865/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7199865/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":88012501,"identity":"282f9010-8dfa-4e73-a8ab-06cb9d3ddaa2","added_by":"auto","created_at":"2025-07-31 12:21:08","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1262754,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7199865/v1/6e79ab53-9488-4a24-ba53-c4e9336fc0d9.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Assessing the Burden and Coping Strategies of Parents of Adolescents with the Autism Spectrum Disorder","fulltext":[{"header":"1. Introduction","content":"\u003cp\u003eThe autism spectrum disorder (ASD) is a neurodevelopmental disorder that appears since early childhood. The diagnosis is based on the association of two clinical characteristics: the alteration of social communication domain, and the limited and repetitive character of behavior, activities and interests [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e].\u003c/p\u003e\u003cp\u003e Adolescence, for young people with ASD is a particular life stage, for these young people facing physical, biological and mental changes, and for their parents, who have to cope with the challenges related to their child's development.\u003c/p\u003e\u003cp\u003eParents play a fundamental caregiving role for these teenagers, requiring increased availability, effort, social support, and financial resources [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. These factors can disrupt family routines and adversely affect caregivers\u0026rsquo; physical and mental health [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eThe effect of these different stressors on caregivers is called burden [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Burden is defined as \u0026ldquo;all the physical, psychological, emotional, social and financial consequences borne by caregivers\u0026rdquo; [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eTo cope with this burden and manage the daily challenges associated with parenting an adolescent with ASD, parents rely on various coping strategies.\u003c/p\u003e\u003cp\u003e Given the crucial role of parental psychological health in caregiving for adolescents with ASD, we conducted this study to assess parents\u0026rsquo; levels of burden and the coping strategies they adopt, as well as to identify factors associated with both.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cp\u003eThis is a cross-sectional, descriptive, and analytical study conducted via a survey during the month of May 2024. It involved parents of adolescents with ASD who were receiving care at the Erraihan therapeutic farm in Sfax, Tunisia.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe Erraihan therapeutic farm is a center run by the Ibn-Sina association. It provides daytime services for adolescents aged 13 and over with ASD.\u003c/p\u003e\n\u003ch3\u003e2.1 Study design and participants\u003c/h3\u003e\n\u003cp\u003eWe included parents of children diagnosed with autism according to DSM-5 diagnostic criteria, aged between 13 and 20 years old, who had regular contact with the adolescent for at least ten hours per week.\u003c/p\u003e\n\u003cp\u003eWe excluded parents with limited intellectual abilities or severe psychiatric disorders that prevented them from understanding the questions, as well as those who did not provide informed consent.\u003c/p\u003e\n\u003ch3\u003e2.2 Data collection\u003c/h3\u003e\n\u003cp\u003eThe questionnaire was administered following an invitation to parents by the center director. For each adolescent, only one parent (father or mother) responded to the questionnaire.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis work was carried out while ensuring the anonymity of the participants.\u003c/p\u003e\n\u003cp\u003eThe evaluation was based on:\u003c/p\u003e\n\u003cp\u003e-The Assessment of socio-biographical characteristics.\u003c/p\u003e\n\u003cp\u003e-A structured, hetero-questionnaire was conducted using a pre-established form by the same investigating physician to collect data on both the parent and adolescent. Psychometric assessment was then performed using validated scales:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eThe “Zarit Burden Inventory” 12-item scale in its Arabic version- was used [7].\u0026nbsp;This instrument evaluates the impact of the disease on the caregiver's quality of life: psychological and moral suffering, financial difficulties, shame, difficulties in social and family relationships, and guilt [8]. Each item is scored on a 5-point Likert scale (0 = “never” to 4 = “nearly always”). The total score is obtained by adding up the scores for the 12 items. Total scores range from 0 to 48, with higher scores indicating greater caregiver burden\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eThis score allows the burden to be classified according to the following interpretation:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003e0-10: no burden or slight burden\u003c/li\u003e\n \u003cli\u003eBetween 10 and 20: slight to moderate burden\u003c/li\u003e\n \u003cli\u003e\u0026gt; 20: severe burden.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eParticipants with scores corresponding to ‘no to mild burden’ and ‘mild to moderate burden’ were combined into a single category, termed the 'no to moderate burden' group.\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eThe “Brief-COPE” scale: In our study, we used the Arabic version of the Brief-COPE\u0026nbsp;[9]. It is a multidimensional measurement tool that assesses 14 commonly used coping strategies for dealing with stress according to 14 scales, each with two items.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eThe scales of the tool refer to the following four coping mechanisms:\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eProblem-focused mechanisms:\u003c/em\u003e\u003c/strong\u003e planning and active suppression.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAvoidance-focused mechanisms:\u003c/em\u003e\u003c/strong\u003e behavioral disengagement, denial, substance use, mental disengagement (distraction).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eSocial support-focused mechanisms:\u003c/em\u003e\u003c/strong\u003e seeking instrumental social support, seeking emotional social support, expressing feelings.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eEmotion-focused mechanisms:\u003c/em\u003e\u003c/strong\u003e positive reinterpretation, humor, acceptance, religion, blame.\u003c/p\u003e\n\u003cp\u003eThe 28 items are rated on a scale from 1 (not at all) to 4 (very much). The responses obtained are added up for each scale. Higher scores on a scale indicate increased use of that coping mechanism.\u003c/p\u003e\n\u003ch3\u003e2.3 Statistical data analysis\u0026nbsp;\u003c/h3\u003e\n\u003cp\u003eThe statistical analysis was performed using Statistical Package for Social Sciences (SPSS 20) software for Windows.\u003c/p\u003e\n\u003cp\u003eQuantitative variables were expressed as means and standard deviations, while qualitative variables as frequencies. Associations between categorical variables were evaluated using Pearson’s chi-square (χ²) test, or Fisher’s exact test when expected cell frequencies were less than five. Comparisons of means were conducted using Student's t-test. The difference between results was considered significant for p\u0026lt; 0.05.\u003c/p\u003e"},{"header":"3. Results","content":"\u003ch3\u003e2.1 Descriptive analysis\u0026nbsp;\u003c/h3\u003e\n\u003cp\u003eA total of 43 parents of adolescents with ASD were included in our study, including 37 mothers (86%) and six fathers (14%). The average age of the parents surveyed was 50.6 years (min=36; max=81; and standard deviation=7.93) (Table I), and 33 lived as a couple. The majority lived in urban areas (n=34; 79.1%), and 17 (39.5%) had a higher education level. Fourteen parents (32.6%) suffered from at least one chronic illness. More than half of the parents (55.8%) reported sibling rivalry.\u003c/p\u003e\n\u003cp\u003eFor the adolescent group, males were predominant in the studied population, with 79.1% (n=34), and had an average age of 17.79 years (min=13, max=20 years). The adolescents had siblings in 97.1% of cases. They were the eldest in 48.8% of cases, the middle child in 23.3% of cases, and the youngest in 24.9% of cases. A history of somatic disorders was found in 44.2% of adolescents (n=19). These included epilepsy (n=17), hemophilia (n=1), and blindness (n=1). Psychiatric comorbidity was found in 55.8% of adolescents: mental retardation (n=22) and psychosis (n=2). Regarding diagnosis, the average age of adolescents at the first consultation was 1 year and 6 months (min=1 year and max=4 years). The age of the adolescent at the time of diagnosis ranged from 3 to 6 years, with an average of 3 years and 3 months. The time to treatment ranged from 0 to 24 months, with an average of 5 months. Twenty-three adolescents (53.5%) communicated using speech that was difficult to understand. The majority of adolescents (72.1%) exhibited behavioral disorders. These disorders included auto- and/or hetero-aggression, disruptive masturbatory behaviors, and debilitating stereotypies. Sphincter control had been achieved in 69.8% of adolescents. Almost half of the adolescents in the study, 44.2%, had attended kindergarten at an early age, and only 14% had begun formal schooling. At the time of the study, none of the participants were enrolled in school.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMedication was prescribed in 62.8% of cases. The molecules prescribed were mainly risperidone (44.2%), chlorpromazine (16.3%), and promethazine (11.6%).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u003cu\u003eTable I: Sociodemographic characteristics of parents\u003c/u\u003e\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"480\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 217px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003eNumber\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 168px;\"\u003e\n \u003cp\u003eFrequency %\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 217px;\"\u003e\n \u003cp\u003eGender\u003c/p\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e37\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e6\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 168px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e86\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e14\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 217px;\"\u003e\n \u003cp\u003eGeographic Origin\u003c/p\u003e\n \u003cp\u003eUrban\u003c/p\u003e\n \u003cp\u003eRural\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e34\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e9\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 168px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e79.1\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e20.9\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 217px;\"\u003e\n \u003cp\u003eEducational level\u003c/p\u003e\n \u003cp\u003eIlliteracy\u0026nbsp;\u003c/p\u003e\n \u003cp\u003ePrimary\u003c/p\u003e\n \u003cp\u003eSecondary\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHigh\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e2\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e12\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e12\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e17\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 168px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e4.7\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e27.9\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e27.9\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e39.5\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 217px;\"\u003e\n \u003cp\u003eSocioeconomic status\u003c/p\u003e\n \u003cp\u003eLow\u003c/p\u003e\n \u003cp\u003eMedium\u003c/p\u003e\n \u003cp\u003eHigh\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e7\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e33\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e3\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 168px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e16.3\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e76.7\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e7\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 217px;\"\u003e\n \u003cp\u003eProfessional status\u003c/p\u003e\n \u003cp\u003eActive\u003c/p\u003e\n \u003cp\u003eInactive\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e23\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e22\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 168px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e51.2\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e48.8\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 217px;\"\u003e\n \u003cp\u003eMarital status\u003c/p\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003cp\u003eDivorced\u003c/p\u003e\n \u003cp\u003eWidow(er)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e33\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e4\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e6\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 168px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e76.7\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e9.3\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e14\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 217px;\"\u003e\n \u003cp\u003eNumber of kids in the family\u003c/p\u003e\n \u003cp\u003eOne\u003c/p\u003e\n \u003cp\u003eTwo\u003c/p\u003e\n \u003cp\u003eThree\u003c/p\u003e\n \u003cp\u003eFour\u003c/p\u003e\n \u003cp\u003eFive\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e4\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e21\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e14\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e2\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e2\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 168px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e9.3\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e48.8\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e32.6\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e4.7\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e4.7\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eThe average burden score according to the Zarit scale was 24.6, with extremes ranging from 0 to 48 and a standard deviation of 20.14. In our population, 62.80% of the parents surveyed had a severe burden.\u003c/p\u003e\n\u003cp\u003eThe study of coping strategies among parents using the Brief-COPE revealed that emotion focus (average score = 2.54, see table) was the coping mechanism most used by parents, followed by problem focus (average score = 2.50) and then social support (average score = 2.45). Avoidance was the least used coping mechanism (average score = 1.63). (Table II)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u003cu\u003eTable II: Mean score of the coping mechanisms adopted by parents according to the Brief Coping Inventory\u003c/u\u003e\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"604\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 293px;\"\u003e\n \u003cp\u003eStrategy \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eMean score\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003eStandard deviation\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 293px;\"\u003e\n \u003cp\u003e\u003cem\u003eEmotion focused coping\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003e2\u003c/em\u003e\u003c/strong\u003e\u003cstrong\u003e\u003cem\u003e.54\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003e0.78\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 293px;\"\u003e\n \u003cp\u003eAcceptance\u003c/p\u003e\n \u003cp\u003eReligion\u003c/p\u003e\n \u003cp\u003ePositive Reframing\u003c/p\u003e\n \u003cp\u003eSelf-blame\u003c/p\u003e\n \u003cp\u003eHumor\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e2.87\u003c/p\u003e\n \u003cp\u003e3.23\u003c/p\u003e\n \u003cp\u003e2.58\u003c/p\u003e\n \u003cp\u003e2.24\u003c/p\u003e\n \u003cp\u003e1.79\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e0.87\u003c/p\u003e\n \u003cp\u003e0.85\u003c/p\u003e\n \u003cp\u003e0.85\u003c/p\u003e\n \u003cp\u003e0.90\u003c/p\u003e\n \u003cp\u003e0.83\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 293px;\"\u003e\n \u003cp\u003e\u003cem\u003eProblem Focused strategies\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003e2.50\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003e0.38\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 293px;\"\u003e\n \u003cp\u003ePlanning\u003c/p\u003e\n \u003cp\u003eActive Coping\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e2.96\u003c/p\u003e\n \u003cp\u003e2.31\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e0.86\u003c/p\u003e\n \u003cp\u003e0.85\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 293px;\"\u003e\n \u003cp\u003e\u003cem\u003eSocial Support\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003e2.45\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003e0.63\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 293px;\"\u003e\n \u003cp\u003eInstrumental Support\u003c/p\u003e\n \u003cp\u003eEmotional Support\u003c/p\u003e\n \u003cp\u003eVenting\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e2.59\u003c/p\u003e\n \u003cp\u003e2.54\u003c/p\u003e\n \u003cp\u003e2.23\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e0.93\u003c/p\u003e\n \u003cp\u003e0.89\u003c/p\u003e\n \u003cp\u003e0.86\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 293px;\"\u003e\n \u003cp\u003e\u003cem\u003eDysfunctional Strategies\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003e1.63\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003e0.35\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 293px;\"\u003e\n \u003cp\u003eSelf-Distraction\u003c/p\u003e\n \u003cp\u003eBehavioral Disengagement\u003c/p\u003e\n \u003cp\u003eDenial\u003c/p\u003e\n \u003cp\u003eSubstance Abuse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e1.95\u003c/p\u003e\n \u003cp\u003e1.84\u003c/p\u003e\n \u003cp\u003e1.67\u003c/p\u003e\n \u003cp\u003e1.06\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e0.72\u003c/p\u003e\n \u003cp\u003e0.86\u003c/p\u003e\n \u003cp\u003e0.84\u003c/p\u003e\n \u003cp\u003e0.38\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;3.2 Analytical study\u003c/strong\u003e\u003c/p\u003e\n\u003ch3\u003e3.2.1 Relationship between parental characteristics and level of burden\u003c/h3\u003e\n\u003cp\u003eIn our study, severe burden level was significantly associated with the parent\u0026rsquo;s history of at least one somatic illness (p=0.03).\u003c/p\u003e\n\u003cp\u003eSimilarly, a severe level of burden was significantly associated with having more than two children in the family (p=0.02) and the presence of sibling rivalry (p=0.04) (Table III). We found no statistical association between the level of burden and the following parental characteristics: age, gender, marital status and professional status.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u003cu\u003eTable III: Relationship between parental characteristics and level of burden\u003c/u\u003e\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"644\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 292px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u003cu\u003e\u0026nbsp;\u003c/u\u003e\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eLevel of burden\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eP\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 152px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAbsent to moderate\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSevere\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 292px;\"\u003e\n \u003cp\u003eMean age of the mothers (SD)\u003c/p\u003e\n \u003cp\u003eMean age of the fathers (SD)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 152px;\"\u003e\n \u003cp\u003e46.62yo (7.7)\u003c/p\u003e\n \u003cp\u003e56.79yo (7.25)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e49.79yo (4.92)\u003c/p\u003e\n \u003cp\u003e59.78yo (7.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e0.99\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 292px;\"\u003e\n \u003cp\u003eInterrogated parent\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Father\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Mother\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 152px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e33.3%\u003c/p\u003e\n \u003cp\u003e37.8%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e66.7%\u003c/p\u003e\n \u003cp\u003e62.2%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e0.82\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 292px;\"\u003e\n \u003cp\u003eMarital\u0026nbsp;Status\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Married\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Divorced\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 152px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e40.6%\u003c/p\u003e\n \u003cp\u003e27.3%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u003cu\u003e\u0026nbsp;\u003c/u\u003e\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e59.4%\u003c/p\u003e\n \u003cp\u003e72.7%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e0.42\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 292px;\"\u003e\n \u003cp\u003eProfessional\u0026nbsp;Status\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Active\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Inactive\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 152px;\"\u003e\n \u003cp\u003e31.8%\u003c/p\u003e\n \u003cp\u003e42.9%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u0026nbsp;68.2%\u003c/p\u003e\n \u003cp\u003e57.1%\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e0.45\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 292px;\"\u003e\n \u003cp\u003eHistory of somatic illness\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Yes\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;No\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 152px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e28.6%\u003c/p\u003e\n \u003cp\u003e41.4%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e71.4%\u003c/p\u003e\n \u003cp\u003e58.6%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e0.03\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 292px;\"\u003e\n \u003cp\u003eNumber of kids \u0026gt;2\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Yes\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;No\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 152px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e36%\u003c/p\u003e\n \u003cp\u003e38.9%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e64%\u003c/p\u003e\n \u003cp\u003e61.1%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e0.02\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 292px;\"\u003e\n \u003cp\u003eFraternal rivalry\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Yes\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;No\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 152px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e44.4%\u003c/p\u003e\n \u003cp\u003e75%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e55.6%\u003c/p\u003e\n \u003cp\u003e25%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e0.04\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eSD: standard deviation\u003c/strong\u003e\u003c/p\u003e\n\u003ch4\u003e3.2.2 Relationship between the sociodemographic characteristics of the adolescent and the level of burden felt by the parent\u003c/h4\u003e\n\u003cp\u003eThe level of severe burden was significantly associated with the male gender of the adolescent with ASD (p=0.03) and their rank as the eldest sibling (p=0.01) (Table IV).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u003cu\u003eTable IV: Relationship between adolescents sociodemographic characteristics and the level of burden on parents\u003c/u\u003e\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"536\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 268px;\"\u003e\n \u003cp\u003eLevel of burden\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 83px;\"\u003e\n \u003cp\u003eP\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 165px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAbsent to moderate\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 103px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSevere\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003eMean age (SD)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 165px;\"\u003e\n \u003cp\u003e18.25 yo (2.35)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 103px;\"\u003e\n \u003cp\u003e17.67 yo (2.07)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 83px;\"\u003e\n \u003cp\u003e0.4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003eGender\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Male\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Female\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 165px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e35.3%\u003c/p\u003e\n \u003cp\u003e44.4%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 103px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e64.7%\u003c/p\u003e\n \u003cp\u003e55.6%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 83px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e0.01\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003eThe eldest sibling\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;No\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Yes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 165px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e40.9%\u003c/p\u003e\n \u003cp\u003e33.3%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 103px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e59.1%\u003c/p\u003e\n \u003cp\u003e66.7%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 83px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e0.04\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u003cstrong\u003eSD: standard deviation\u003c/strong\u003e\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003ch4\u003e3.2.3 Link between the clinical and therapeutic characteristics of the adolescent and the level of burden on the parent\u003c/h4\u003e\n\u003cp\u003eThe presence of a severe burden in parents was significantly associated with the presence of self-harming behavioral disorders in adolescents (p=0.02). With regard to therapeutic characteristics, the use of risperidone and sodium valproate was significantly associated with an absent to moderate level of burden, with p=0.01 for both cases. Similarly, the adolescent\u0026apos;s previous integration into school was significantly associated with an absent to moderate level of burden in the parent (p=0.01).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;3.2.4 Relationship between the level of burden and the coping mechanisms used by the parent\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn our study, no significant association was found between overall parent burden and the range of coping mechanisms used, except for humor-based coping, which showed a statistically significant association (p = 0.02; Table V). Parents who use humor-based coping mechanisms reported burden levels ranging from absent to moderate, while those who do not use it reported a more severe level of burden.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u003cu\u003eTable V: Correlations between burden level and average coping mechanism scores among parents\u003c/u\u003e\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"604\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 246px;\"\u003e\n \u003cp\u003eCoping Mechanism\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 274px;\"\u003e\n \u003cp\u003eLevel of Burden\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003eP\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAbsent to moderate\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSevere\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 246px;\"\u003e\n \u003cp\u003e\u003cem\u003eEmotion focused coping\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e2.50\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e2.56\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e0.7\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 246px;\"\u003e\n \u003cp\u003eAcceptance\u003c/p\u003e\n \u003cp\u003eReligion\u003c/p\u003e\n \u003cp\u003ePositive Reframing\u003c/p\u003e\n \u003cp\u003eSelf-blame\u003c/p\u003e\n \u003cp\u003eHumor\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e3.03\u003c/p\u003e\n \u003cp\u003e3.18\u003c/p\u003e\n \u003cp\u003e2.62\u003c/p\u003e\n \u003cp\u003e2.12\u003c/p\u003e\n \u003cp\u003e1.98\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e2.77\u003c/p\u003e\n \u003cp\u003e3.25\u003c/p\u003e\n \u003cp\u003e2.55\u003c/p\u003e\n \u003cp\u003e2.25\u003c/p\u003e\n \u003cp\u003e1.41\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e0.89\u003c/p\u003e\n \u003cp\u003e0.79\u003c/p\u003e\n \u003cp\u003e0.88\u003c/p\u003e\n \u003cp\u003e0.81\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e0.02\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 246px;\"\u003e\n \u003cp\u003e\u003cem\u003eProblem Focused strategies\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e2.59\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e2.45\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e0.51\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 246px;\"\u003e\n \u003cp\u003e\u0026nbsp;Planning\u003c/p\u003e\n \u003cp\u003eActive Coping\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e2.71\u003c/p\u003e\n \u003cp\u003e2.46\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e2.68\u003c/p\u003e\n \u003cp\u003e2.22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e0.09\u003c/p\u003e\n \u003cp\u003e0.36\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 246px;\"\u003e\n \u003cp\u003e\u003cem\u003eSocial Support\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e2.47\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e2.44\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e0.88\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 246px;\"\u003e\n \u003cp\u003eInstrumental Support\u003c/p\u003e\n \u003cp\u003eEmotional Support\u003c/p\u003e\n \u003cp\u003eVenting\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e2.61\u003c/p\u003e\n \u003cp\u003e2.62\u003c/p\u003e\n \u003cp\u003e2.22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e2.56\u003c/p\u003e\n \u003cp\u003e2.5\u003c/p\u003e\n \u003cp\u003e2.25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e0.87\u003c/p\u003e\n \u003cp\u003e0.66\u003c/p\u003e\n \u003cp\u003e0.94\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 246px;\"\u003e\n \u003cp\u003e\u003cem\u003eDysfunctional Strategies\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e1.65\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e1.62\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e0.8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 246px;\"\u003e\n \u003cp\u003eSelf-Distraction\u003c/p\u003e\n \u003cp\u003eBehavioral Disengagement\u003c/p\u003e\n \u003cp\u003eDenial\u003c/p\u003e\n \u003cp\u003eSubstance Abuse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e1.96\u003c/p\u003e\n \u003cp\u003e1.37\u003c/p\u003e\n \u003cp\u003e1.71\u003c/p\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e1.97\u003c/p\u003e\n \u003cp\u003e1.34\u003c/p\u003e\n \u003cp\u003e1.64\u003c/p\u003e\n \u003cp\u003e1.11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e0.91\u003c/p\u003e\n \u003cp\u003e0.77\u003c/p\u003e\n \u003cp\u003e0.79\u003c/p\u003e\n \u003cp\u003e0.52\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"},{"header":"4. Discussion","content":"\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003e4.1 Evaluation of the level of burden\u003c/h2\u003e\u003cp\u003eIn our study, the mean caregiver burden score\u0026mdash;measured using the 12-item Zarit Burden Interview\u0026mdash;was 24.6 (SD 20.14). A severe burden level was observed in 62.8% of cases.\u003c/p\u003e\u003cp\u003eThis is consistent with the findings of Roper et al. [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e], which highlight that parents of children with (ASD) experience a greater caregiver burden compared to parents of typically developing children. Furthermore, adolescence is a period of major changes, causing concern for both adolescents with ASD and their families. Consequently, these families face a double challenge: navigating typical adolescent developmental tasks while concurrently supporting their child\u0026rsquo;s ASD-related. Our study fits within this context, illustrating the extent of the parental burden and gender-specific issues in the care of adolescents with ASD.\u003c/p\u003e\u003cp\u003eSeveral authors have examined the experiences and concerns of parents during this period [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. According to Gillberg [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e], the main concern of parents of adolescents with ASD during puberty is that their child's behavior may be misinterpreted as sexual. In addition, parents of boys with autism fear that their sons may be abused by someone of the same sex, while parents of girls with autism fear that their daughters may be abused by someone of the opposite sex.\u003c/p\u003e\u003cp\u003eResearch also indicates significant differences between the experiences of mothers and fathers. The work of Jones et al. [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e] and Bitsika et al. [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e] show that mothers are more likely to be affected psychologically, with higher levels of stress, anxiety, and depression than fathers. In fact, mothers push themselves harder and seem to feel the burden more intensely. In his qualitative study on the differences between fathers and mothers of children with ASD, Gray [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] highlighted the fact that mothers often sacrificed themselves to care for their child and associated this role with an intense and sometimes disproportionate burden.\u003c/p\u003e\u003cp\u003eIn our study, parents with at least one chronic somatic illness were more likely to experience severe burden (p\u0026thinsp;=\u0026thinsp;0.03). In fact, a chronic illness itself contributes to burden, which is further compounded by the demands of caregiving. This finding aligns with previous research showing that caregivers of individuals with chronic conditions report significantly higher burden, poorer health, and increased emotional strain than their counterparts without chronic illness [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eThis link appears to be bidirectional. On the one hand. the stress caused by the burden of caregiving seems to have negative effects on the caregiver's physical health [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. These effects include high blood pressure and increased cardiovascular reactivity. On the other hand, caregivers who are overwhelmed by caregiving may neglect their own health, forget their medical appointments, and stop taking care of themselves [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eIn addition, characteristics inherent to adolescents seem to influence this burden. In our study, a significant association was found between the level of burden and the presence of self-harming behavioral disorders in adolescents (p\u0026thinsp;=\u0026thinsp;0.02). This is consistent with data from the literature. Studies have shown that the severity of behavioral disorders, their unpredictability, and their violence help explain the specific nature of the significant difficulties observed in these families, compared to those with a child with Down syndrome or Fragile X syndrome [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eWith regard to therapeutic characteristics, parents of adolescents receiving risperidone or sodium valproate had a significantly lower level of burden (p\u0026thinsp;=\u0026thinsp;0.01 in both cases).\u003c/p\u003e\u003cp\u003eBoth medications are known for their effectiveness in managing behavioral disorders commonly associated with autism such as irritability, aggression, hyperactivity, and stereotypy [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e], thereby reducing parental stress and burden.\u003c/p\u003e\u003cp\u003eOur results contrast with those of \u0026Eacute;milie Cappe et al [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e], who reported that parents of children receiving pharmacological treatment exhibit lower satisfaction and poorer quality of life than those whose children are not medicated. For them, these prescriptions are intended to alleviate serious behavioral disorders. Consequently, it would be obvious that these children had violent behaviors that were more difficult to manage on a daily basis for everyone living with them or working with them.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003e4.2 Coping strategies adopted by parents\u003c/h2\u003e\u003cp\u003eFocusing on emotions (average score\u0026thinsp;=\u0026thinsp;2.54) was the coping mechanism most used by parents. followed by focusing on the problem (average score\u0026thinsp;=\u0026thinsp;2.50) and then social support (average score\u0026thinsp;=\u0026thinsp;2.45). Avoidance was the least used coping mechanism (average score\u0026thinsp;=\u0026thinsp;1.63).\u003c/p\u003e\u003cp\u003eThese results are consistent with those in the literature, since \u0026ldquo;emotion-focused coping\u0026rdquo; followed by \u0026ldquo;problem-focused coping\u0026rdquo; and then \u0026ldquo;seeking social support\u0026rdquo; were the coping mechanisms most commonly adopted by parents [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eHowever, a study similar to ours in terms of female predominance highlighted the preferential use by mothers of strategies focused on religion, emotions, and seeking social support [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eReligion was the most commonly used coping strategy within the emotion-focused mechanism, with the highest average among the various coping mechanisms. Some authors have demonstrated the protective effect of religious practices on family caregivers' perception of burden [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Indeed, for some spirituality is a source of hope and courage and a refuge that helps to reduce the level of burden felt.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\u003ch2\u003e4.3 Link between parental burden and coping strategies adopted\u003c/h2\u003e\u003cp\u003e Many researchers have examined the factors that predict well-being and adjustment in these parents. One commonly studied coping strategy is the use of social support, which is typically defined as the perceived availability of assistance from family and friends. A Canadian study involving 283 mothers of children with ASD suggest that high levels of social support are associated with lower levels of parental stress [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. In our study, only the emotion-focused coping strategy of humor was significantly more prevalent among parents with no or moderate levels of burden compared to those with severe burden (1.98 versus 1.41; p\u0026thinsp;=\u0026thinsp;0.02). In other words, parents who used more frequently emotion-focused coping strategies involving humor had significantly lower levels of burden. This strategy may help them gain psychological distance from stressful situations and promote a positive perception.\u003c/p\u003e\u003cp\u003eFor other coping strategies. no significant association was found with the level of burden. which is consistent with the results of an Iranian study published in 2023 [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e] where no significant relationship was found between the level of burden and the coping mechanism. In our study, social support scores were similar between parents with no or moderate burden and those with severe burden. This lack of significance regarding social support can be explained by the family and social stigma felt due to the violence and suddenness of the adolescent's behavioral disorders. Ultimately, ASD would generate a great deal of stigma for the parent, further overwhelming them and creating an even more severe burden. They avoid talking about the condition with those around them. expressing their feelings, or asking for support, for fear of suffering this stigma. This vicious circle in which the caregiver finds themselves may partly explain the lack of correlation between the level of burden and coping strategies focused on social support in our study [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e].\u003c/p\u003e\u003c/div\u003e"},{"header":"5. Conclusion","content":"\u003cp\u003eIn conclusion, it is essential to recognize that the burden experienced by parents of adolescents with autism spectrum disorder (ASD) is complex and multidimensional. The results highlight the importance of promoting coping strategies among parents of adolescents with autism.\u003c/p\u003e\u003cp\u003eHolistic care, which includes support for both parents and adolescents, is essential to improving the quality of life of families affected by ASD. As such, targeted interventions should be promoted that take into account the specificities of the parental experience and the individual needs of each family, while strengthening access to adequate resources to better cope with daily challenges.\u003c/p\u003e\u003cp\u003e It is therefore legitimate to pay more attention to parents of adolescents with ASD in order to lighten their burden, enable them to better adapt to this role with the aim of optimizing the quality of care for these adolescents, and flourish in their parental role while supporting their adolescent's development.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics statement\u003c/p\u003e\n\u003cp\u003eThis study received approval from the Ethics Committee of the University of Medicine of Sfax, Tunisia. All participants were fully informed about the purpose, procedures, benefits, and potential risks of the research, and parental consent was obtained for participation. Participation was entirely voluntary, and confidentiality and anonymity of responses were maintained throughout. Participants were informed of their right to withdraw from the study at any time without any consequences. Data collection and analysis were conducted in accordance with ethical principles, including respect for persons, beneficence and justice, with particular care taken to communicate in clear, accessible language suited to the study population. We certify that the study was performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eCompliance with Ethical Standards\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNo funding was received to assist with the preparation of this manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWritten informed consent to participate was obtained from all adult participants prior to enrollment.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWe certify that the study was performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePatient consent\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eInformed consent was obtained from all individual participants included in the study.\u003c/p\u003e\n\u003cp\u003eAdditional informed consent was obtained from all individual participants for whom identifying information is included in this article.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors confirm that the data supporting the findings of this study are available within the article and/or its Supplementary Materials.\u003c/p\u003e\n\u003cp\u003eIf you need any additional information or data, please feel free to contact us.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eCrocq M-A. 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Psychiatric Ment Health Nurs 2003;10:592\u0026ndash;607. https://doi.org/10.1046/j.1365-2850.2003.00623.x.\u003c/li\u003e\n\u003cli\u003eCoid JW. Ullrich S. Kallis C. Keers R. Barker D. Cowden F. et al. The Relationship Between Delusions and Violence: Findings From the East London First Episode Psychosis Study. JAMA Psychiatry 2013;70:465. https://doi.org/10.1001/jamapsychiatry.2013.12.\u003c/li\u003e\n\u003cli\u003eSwanson JW. Holzer CE. Ganju VK. Jono RT. Violence and Psychiatric Disorder in the Community: Evidence From the Epidemiologic Catchment Area Surveys. PS 1990;41:761\u0026ndash;70. https://doi.org/10.1176/ps.41.7.761.\u003c/li\u003e\n\u003cli\u003eYirmiya N. Shaked M. Psychiatric disorders in parents of children with autism: a meta‐analysis. Child Psychology Psychiatry 2005;46:69\u0026ndash;83. https://doi.org/10.1111/j.1469-7610.2004.00334.x.\u003c/li\u003e\n\u003cli\u003eAbbeduto L. Seltzer MM. Shattuck P. Krauss MW. Orsmond G. Murphy MM. 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Ital J Pediatr 2023;49:53. https://doi.org/10.1186/s13052-023-01465-0.\u003c/li\u003e\n\u003cli\u003eLenoire P. Malvy J. Bodier C. L\u0026rsquo;autisme et les troubles du d\u0026eacute;veloppement psychologique. deuxi\u0026egrave;me. Elseiver; 2007.\u003c/li\u003e\n\u003cli\u003eZouitni K. L\u0026rsquo;aidant familial marocain \u0026agrave; l\u0026rsquo;\u0026eacute;preuve de la maladie mentale : fardeau. stigmatisation et strat\u0026eacute;gies de coping. Sciences sociales et sant\u0026eacute; 2020;38:85\u0026ndash;112. https://doi.org/10.1684/sss.2020.0185.\u003c/li\u003e\n\u003cli\u003eZaidman-Zait A. Mirenda P. Duku E. Vaillancourt T. Smith IM. Szatmari P. et al. Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism 2017;21:155\u0026ndash;66. https://doi.org/10.1177/1362361316633033.\u003c/li\u003e\n\u003cli\u003eDanko M. Perception et v\u0026eacute;cu subjectif de stigmatisation familiale chez le proche aidant d\u0026rsquo;une personne ayant re\u0026ccedil;u le diagnostic de maladie d\u0026rsquo;Alzheimer (MA). Universit\u0026eacute; Paul Valery Montpellier III. 2017.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Parent, Adolescent, Autism Spectrum Disorder, Burden, Coping","lastPublishedDoi":"10.21203/rs.3.rs-7199865/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7199865/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e Adolescence is a unique life stage, both for the teenagers, facing physical and mental changes, and for their parents who must deal with the challenges related to their child's development and the disorder. This period, can represent a burden leading to exhaustion and deterioration of their psychological health.\u003c/p\u003e\u003cp\u003e We aimed to assess the level of burden and coping strategies adopted by the parents and to investigate the associated factors.\u003c/p\u003e\u003cp\u003e We conducted a cross-sectional study among parents of adolescents with autism spectrum disorder. The questionnaire collected sociodemographic information for both parents and adolescents, and included the Zarit Burden Inventory to assess caregiver burden as well as the Brief‑COPE to evaluate coping strategies.\u003c/p\u003e\u003cp\u003eWe included 43 parents with an average age of 50.6 years. Mothers represented 86% of the respondent (n\u0026thinsp;=\u0026thinsp;37). The average age of the adolescents was 17.79 years. Male adolescents were predominant (sex ratio\u0026thinsp;=\u0026thinsp;3.7). The parental burden was severely intense in 62.8% of the respondents. The burden was significantly associated to parents suffering from at least one somatic illness (p\u0026thinsp;=\u0026thinsp;0.03) and those with more than two children (p\u0026thinsp;=\u0026thinsp;0.02). Sibling rivalry was associated to severe level of burden (p\u0026thinsp;=\u0026thinsp;0.04). Emotion-focused coping was the most commonly used mechanism by parents, followed by problem-focused coping and social support. A significant association was found between the level of burden and the humor-based coping mechanism (p\u0026thinsp;=\u0026thinsp;0.02).\u003c/p\u003e\u003cp\u003eOur findings highlight the necessity of supporting parents of adolescents with autism spectrum disorder to alleviate their caregiving burden and enhance their coping strategies.\u003c/p\u003e","manuscriptTitle":"Assessing the Burden and Coping Strategies of Parents of Adolescents with the Autism Spectrum Disorder","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-07-31 11:57:01","doi":"10.21203/rs.3.rs-7199865/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"0490e2a6-099e-4df4-b224-5ca0570051c5","owner":[],"postedDate":"July 31st, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-08-29T12:08:37+00:00","versionOfRecord":[],"versionCreatedAt":"2025-07-31 11:57:01","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7199865","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7199865","identity":"rs-7199865","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}