الفهرس 
INTRODUCTION AND AIM OF THE STUDYOnly 14 pages are availabe for public view
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Abstract
Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that has been considered a major public health challenge due to its significantly rising prevalence affecting around 1 in 160 children worldwide, in addition to its life long devastating impact on both children and their entire families. Children with ASD had a higher rate of comorbid physical, psychiatric as well as behavioral problems which affect more than half of them. Facing unique challenges related to ASD characteristics and its associated conditions, in addition to uncertainty on how to manage these conditionscreated a subgroup of parents experiencing more psychological distress than other parents.
Considering the major impact of behavioral problems in children with ASD on children themselves as well as their parents illustrates arising need for an effective culturally sensitive multi-component parent focused intervention program.
The aim of the present study was to assess the effectiveness of a culturally sensitive multi-component parent focused intervention program (psychoeducation, parent training (PT) and brief CBT) for caregivers of children with ASD attending Alexandria University Specialized Children’s Hospital. Specific objectives included: identifying and describing pattern of behavioral problems among children with ASD attending the mentioned setting; assessing emotional status (depression, anxiety, and stress) of caregivers of children with ASD and behavioral problems; designing and implementing a parent focused intervention program for these caregivers; and finally evaluating the effect of the intervention program on child’s behavioral problems, caregiver’s ASD related knowledge and emotional status.
The present study targeted children with ASD with their parents/caregivers (parent/caregiver-child dyads) attending the neurology out-patient clinic of Alexandria University Specialized Children’s Hospital and the outpatient mental health clinic of the High Institute of Public Health.The targeted sampled parent/caregiver-child dyads were those parent/caregiver of children 3 years old or older diagnosed with ASD according to DSM-5 diagnostic criteria nominating at least one target problem reflecting disruptive or noncompliant behavior.
A quasi-experimental design with control group was used to assess the effectiveness of the intervention program. 92 parent/caregiver-child dyads were recruited using a structured interview to collect demographic and socio-economic data of parent/caregiver-child dyads, psychiatric history, medical history of chronic diseases or physical disabilitiesof the child, current history of behavioral problems, and history of parents’ enrollment in previous structured PT programs. Eligible dyads were further subjected to psychological tools; “ASD knowledge self-report questionnaire”, “The Arabic Version of Child Autism Rating Scale (CARS)”, “The Arabic Version of Strengths and Difficulties Questionnaire (SDQ Parent-form)”, “The Arabic Version of Home Situation Questionnaire for ASD (HSQ-ASD)” and “The Arabic Version of Depression Anxiety Stress Scales (DASS-21)”. Eligible parents/caregivers were contacted to be assigned to the intervention group according to order of taking the screening tools and appropriateness of the assigned day of the group to them. An equal number was set for control. Participants of the intervention phase (intervention and non-intervention groups) were subjected to another structured interview using the same psychological tools at the end of the program and three months later for follow up.
The multi-component parent focused intervention program was composed of 10 sessions, 60-90 minutes each. Sessions were intended to; raise parent’s knowledge and understanding regarding common behavioral problems in children with ASD; improve parent’s skills to manage different behavioral problems in their children; and to improve parent’s emotional status, i.e. to reduce depression, anxiety and stress symptoms.
Evaluation of the program was carried out twice (for intervention and non-intervention groups); immediately after the program completion and three months later.
The study revealed the following important results:
The majority of the sampled children with ASD were males (58.7% of the intervention group and 93.5% of the non-intervention one) with a mean age of 7.13 ± 1.60 years of the intervention group compared to 6.56 ± 1.83years of the non-intervention one with no statistically significant difference between the two groups.
The largest portion of both the intervention and the non-intervention groups were in play school (50% and 60.9% respectively), and living with both parents (73.9% and 87% respectively).
The highest percentage of both the intervention and the non-intervention groups (82.6% and 76.1% respectively) had a 3 - <7 years duration of illness with no statistically significant difference revealed between the two groups.
The vast majority of both the intervention and the non-intervention groups (100% and 91.3% respectively) reported receiving treatment in the form of behavioral/ psychological sessions, speech sessions (84.8% and 87% respectively), and medications (67.4% and 50% respectively) with no statistically significant difference between the two groups.
Nearly half of both the intervention and the non-intervention groups (50% and 52.2% respectively) reported having a history of comorbid ADHD with no significant difference between the two groups.
Negative history of any chronic physical illness was reported by the majority of both the intervention and the non-intervention groups (84.8% and 82.6% respectively) with no statistically significant difference between the two groups.
Regarding the total mean CARSscore, the intervention group recorded slightly lower mean total scores (29.57 + 6.46) compared to the non-intervention group (30.89 + 4.50) with no statistically significant difference between the two groups. As for severity of symptoms, half of the sampled intervention group had minimal to no symptoms of ASD compared to about 39% of the non-intervention group, while mild to moderate symptoms rated 32.6% among the intervention group compared to 43.5% among the non-intervention group. Yet, the difference between the two groups was statistically insignificant.
Concerning number of reported behavioral problems, the highest percentage of both the intervention and the non-intervention groups had 2-3 problems (67.4% and 47.8% respectively), with a lower mean number of child behavioral problems reported by caregivers in the intervention group (2.37 + 1.06 versus 2.87 + 2.14). No statistically significant difference between the two groups was encountered.
As regards types of behavioral problems, the intervention group rated higher on non-compliance behavior compared to the non-intervention group (56.5% versus 32.6%) with statistically significant difference between both groups. On the other hand, the non-intervention group outnumbered the intervention group regarding food refusal, producing annoying sounds, sleep refusal, temper tantrums, self-injury and violence towards others, with no statistically significant difference revealed between the two groups except for food refusal and sleep refusal.
The majority of caregivers in both the intervention and the non-intervention groups responded to their children behavioral problems by trying to stop them (84.8% and 89.1 % respectively) while the least percentage responded by leaving the place (13% and 4.3% respectively). No statistically significant difference was revealed between the two groups.
All the intervention group was identified with abnormal total problem scores of SDQ at baseline compared to 93.5% of the non-intervention group. The intervention group total mean problem scores of SDQ slightly exceeded that of the non-intervention group (20.91 + 3.04 versus 19.93 + 2.60), with no statistically significant difference revealed between the two groups.
Regarding different subscales of SDQ at baseline, the vast majority of both the intervention and the non-intervention groups had abnormal scores of peer problems and impact subscales (93.5% each versus 91.3% each respectively). Half of the sampled intervention group had abnormal scores of conduct problems and prosocial subscales compared to 43.5% and 67.4% of the non-intervention group respectively. About half of both the intervention and the non-intervention group had abnormal scores of emotional problems subscale (56.5% versus 47.8% respectively) while about third of both groups had abnormal scores of hyperactivity subscale (32.6% versus 41.3% respectively). No statistically significant difference was found between the two groups regarding any of the different subscales of SDQ at baseline.
Both intervention and non-intervention groups recorded nearly equal mean scores on HSQ at baseline (30.11 + 13.17 versus 30.02 + 15.71) with no statistically significant difference between the two groups.
The majority of children in both the intervention and non-intervention groups were cared by their mothers (73.9% and 95.7% respectively) with a mean age of 39.87 + 10.80 years for the intervention caregivers compared to 36.87 + 6.65 of the non-intervention ones.
Most of the sampled biological mothers were married (82.6% of the intervention group and 95.7% non-intervention group), where most families were composed of 3-5 members (87% of the intervention group and 93.5% of the non-intervention group). No statistically significant difference was found between the two groups.
Concerning father’s education and occupation, the highest percentage of the intervention group (41.3%) were university graduates or higher compared to 50% of the non- intervention group. As well, the highest percentage of the intervention group were manual workers (41.3%), while that of the non-intervention group were clerks (39.1%).
More than one third of the intervention group mothers (37%) were university graduates or higher compared to about half of the non- intervention group (47.8%). The highest percentage of both the intervention and the non-intervention group mothers were housewives (73.9% and 58.7% respectively) with no statistically significant difference between the two groups.
More than half of the sampled caregivers of the intervention and the non-intervention groups reported having enough income (76.1% and 52.2% respectively) with statistically insignificant difference between the two groups.
As regards emotional status of caregivers, very severely depressed caregivers were equally presented in both the intervention and the non-intervention groups (41.3% each). Severe depression was more encountered among the non-intervention group (21.7%) versus 15.2% of the intervention group, while mild and moderate depression were higher among the intervention group (26.1% and 17.4% versus 10.9% and 15.2% respectively). Mild and moderate anxiety and stress were more encountered among the intervention group compared to the non-intervention group (0% and 26.1%, 17.4% and 26.1% versus 4.3% and 17.4%, 6.5% and 15.2% respectively), while the reverse was true for very severe anxiety and stress (52.2% versus 41.3% and 41.3% versus 30.4% respectively). No statistically significant difference was found between the two groups.
Regarding ASD related knowledge, on basal assessment 19.6% of the intervention group and 26.1% of the non-intervention group had highly satisfactory knowledge, while 80.4% and 65.2% of the intervention group and non- intervention group respectively had satisfactory knowledge. No statistically significant difference was found between the two groups at baseline. Directly after the intervention program, highly satisfactory level of knowledge increased to 71.7% among the intervention group compared to 28.3% of the non-intervention group.These results showed statistically significant increase in ASD related knowledge level in the intervention group compared to the non- intervention group, as well as the positive effect of the intervention program in improving ASD related knowledge among the intervention group across time (p=0.00).
Concerning child’s behavioral problems,a statistically significant decrease in total SDQ mean scores was reported at first and second follow up assessments in the intervention group compared to the non-intervention group. The intervention group mean score decreased to 15.30 + 5.27 at first assessment, and 10.98 + 3.54 at second assessment compared to 20.91 + 3.04 at the base line with statistically significant DROP across time (p=0.00). As well, a statistically significant decrease across time was encountered among different subscales of SDQ including; emotional problems, conduct problems, hyperactivity, peer problems and impact subscales, while a statistically significant increase across time was encountered among prosocial subscale.
Similarly, positive effect of the program on child’s behavioral problems was evidenced by a statistically significant consistent decrease in number of reported behavioral problems in the home setting across time in the intervention group evidenced by decrease in HSQ mean scores from 30.11 + 13.17 at baseline to 17.11 + 11.21 at post-1 and 14.11 + 10.86 at post-2 (p=0.00).
As for caregivers’ emotional status, depression, anxiety and stress symptom of the intervention group showed statistically significant decline in their rates manifested by significant DROP in DASS subscales mean scores at post intervention-1 and post intervention-2. As regards depression, mean scores decreased to 12.78 + 9.02 at post-1 and 13.65 + 9.32 at post-2 after being 24.26 + 10.28 at baseline, this DROP in severity of depressive symptoms across time was statistically significant (p=0.00). Baseline mean anxiety scores was 19.80 + 10.90 which decreased significantly to 11.78 + 9.48 at post-1, and 8.63 + 6.54 at post-2 indicating a statistically significant DROP in severity of anxiety symptoms across time (p=0.00). For stress, a consistent statistically significant decrease in mean stress scores of the intervention group was evident across time (25.91 + 10.01 at baseline, 15.70 + 10.43 at post-1 and 16.65 + 11.65 at post-2 - p=0.00). On the other side, no statistically significant change was noticed across time in the non-intervention group regarding severity of depression, anxiety or stress symptoms with statistically significant difference between the two groups at both follow up assessments.
Improvement in child’s behavioral problems was significantly predicted by; being a female child, absence of comorbid psychiatric disorders, less number of reported behavioral problems, higher baseline score of SDQ, younger age of caregivers, married mothers, higher family income, and higher post-2 score of knowledge scale. Whereas improvements in caregiver’s depressive, anxiety and stress symptoms were significantly predicted by; parenting a female child; unmarried mothers; large family size; higher mother education and working mothers. Additional positive predictor for improvement in severity of depressive symptom included longer duration of child’s illness while for anxiety symptoms included more severe ASD symptoms.
The program showed a significant improvement in the outcome measures of child’s behavioral problems, caregivers’ ASD related knowledge, as well as caregivers’ depression, anxiety and stress measures after the program termination. The intervention group recorded significant negative percentage mean change on child’s behavioral problems, caregivers’ depression, anxiety and stress measures, meanwhile, they recorded significant positive percentage mean change on caregivers’ ASD related knowledge measure. The highest change was reported in caregivers’ anxiety symptoms outcome (-63.64), followed by percentage mean changes in caregivers’ depression symptoms, child’s behavioral problems and caregivers’ stress symptoms (-52.63, -45.64 and -38.18 respectively) and the least percentage mean change was recorded on knowledge (30.03).