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Research Article - ASEAN Journal of Psychiatry (2022)

Parent of a child with autism spectrum disorder's Quality of Life during COVID-19 pandemic in Taif KSA

1Department of Nursing, Taif University, Riyadh, Saudi Arabia

*Corresponding Author:

Suheir Sayed, Department of Nursing, Taif University, Riyadh, Saudi Arabia, Email: [email protected]

Received: 19-Apr-2022, Manuscript No. AJOPY-22-65304; Editor assigned: 25-Apr-2022, Pre QC No. AJOPY-22-65304 (PQ); Reviewed: 09-May-2022, QC No. AJOPY-22-65304; Revised: 16-May-2022, Manuscript No. AJOPY-22-65304 (R); Published: 23-May-2022, DOI: 10.54615/2231-7805.47330.

Abstract

Background: COVID-19 pandemic, the new panorama that we are facing makes it difficult for many people to grasp and assimilate all that is going on. This challenge can become severe in people with autism, both in children and in adults around 10% of autistic individuals have co-occurring physical conditions. Parents of children with ASD in Saudi Arabia face several challenges. Aim: To Assess Autism Spectrum Disorder Parental Quality of Life During Covid 19. Method: Descriptive community base study was conducted at the city of Al-Taif using semi-structured questionnaire during Feb. 2022 , A total of 76 parents living in Al-Taif participated in the study. Results: The study shows that the most frequency of effect of the emerging corona virus Covid 19 on making the lives of children with autism more isolated distributed among study sampling parents of autism children was to a certain extent, the percentage 31, the most frequency of effect of the emerging corona virus Covid 19 on health condition of children with autism distributed among study sampling parents of autism children was disagree, the percentage 32.8, the most frequency effect distribution of emerging coronavirus Covid 19 pandemic on aggressive of children with autism was disagree and the percentage 32.8, and the most frequency effect distribution of emerging coronavirus Covid 19 pandemic on learning of children with autism was strongly agree and the percentage 44.8. Conclusion: The Corona epidemic has doubled the suffering of children with special needs, as the quarantine period and the reduction in the movement to go out to schools and movement have been an incomprehensible thing for them, and it is difficult for them to realize its risks, and the deterioration of their health condition has increased in light of their failure to follow the treatment and follow-up sessions in the Autism House and clinics for months Also. Children of this category are unable to express what is going on inside them towards the ongoing developments of people wearing masks and social distancing, which has been imposed in varying proportions for weeks and months, even for a short period. ASEAN Journal of Psychiatry, Vol. 23(5) May, 2022; 1-11.

Keywords

Autism Spectrum Disorder, Parent, Quality of Life and Coved 19

Introduction

The global prevalence of autism in the population is around 1 percent [1]. With the COVID-19 pandemic, the new panorama that we are facing makes it difficult for many people to grasp and assimilate all that is going on. This challenge can become severe in people with autism, both in children and in adults Around 10% of autistic individuals have co-occurring physical conditions [2]. In people with autism, an elevated incidence of different chronic disorders and medical problems has been observed [3]. And atypical immune reactions are also seen [4]. The susceptibility to COVID-19 can be increased by all these factors It indicates that there are signs of anxiety, depression, and posttraumatic stress disorder when witnessing a pandemic [5]. Since autistic individuals are overwhelmingly likely to suffer mental illness [6] and nine times more likely to die by suicide than the general population the mental health consequences of COVID-19 may be devastating [7,8]. A systematic analysis of the epidemiology of autism in the Gulf countries showed a prevalence ranging from 1.4 to 29/10,000 people. HY» The approximate prevalence of autism in primary school children aged 7-12 years was 0.035 percent in a study in Taif, Saudi Arabia. HY» No new prevalence figures for children with autism/ASD in Saudi Arabia have been revealed in a study of the available literature [9]. The Ministry of Health of Saudi Arabia has confirmed that one in every 160 children has ASD.

The Saudi health authority provides and assists its families with resources for the treatment of autistic children. Funding from the Saudi government funds private institutions to care for ASD children, although the services given are insufficient. Special education is offered to students with disabilities.

However, because of the conservative nature of the community and the amount of training time needed more than 30 hours almost every week, parents of children with ASD in Saudi Arabia face several challenges [10]. Very few studies have described the QOL of parents of autistic children in Arab countries to the best of our knowledge, and few studies have been carried out in Saudi Arabia to describe the QOL level of parents of children with ASD [11].

Research Design and Methods

Study Design

The study analyzed cross-sectional parental-reported data and was used to examine the Parental Quality of Life (QoL) in Autism Spectrum disorder (ASD) during COVID-19 [12].

Setting

The study was conducted at the city of Al-Taif using semi-structured online questionnaire during Feb. 2021.

Study population

Criterion sampling was used to determine the possible participants of the study. The criteria in the study were determined for the parents who have a child diagnosed with ASD according to DSM-5 criteria, providing accepting to participate in the study voluntarily.

Sample size

A total of 76 parents living in Al-Taif participated in the study in line with the criteria.

Sampling procedure

The aim and participation process of the study was explained to the parents on the phone by the primary researchers. Then, the parents fill consent forms via email and it was planned when to make phone calls with each parent.

Study period

Over the period between Jan. 30 and Feb. 28

Study variables

Personal information form: demographic information about parents Age, Gender, income level, educational Background and their children Gender, Age, Diagnosis. A semi-structured questionnaire forms at the Arabic version of the short form 36 to assess their QoL It has 8 domains on general health, physical functioning, physical role limitation, role limitation resulting from emotional issues, energy fatigue, bodily pain, emotional well-being and social function part; participants were asked to respond to questions according to how they had felt during the whole period of the Covid-19 pandemic [13].

Data Collection Technique and Tools

Data was collected by: semi-structured online questionnaire.

Data analysis and processing

The collected data were coded and analyzed using the Statistical Package for the Social Science (SPSS, IBM, Corporation Armonk, New York, USA [14-16]. Qualitative data were expressed as numbers and percentage whereas quantities data were presented as the mean and standard error. Data were compared by use of Chi-square test. The tools were being tested and modified accordingly.

Data presentations

Data was represented in the form of simple frequency, tools, graphs, statistical significance [17].

Ethical consideration

Written informed consent was taken from all participants [18,19]. Before the start of the interview, participants were assured that collected data would be treated with the greatest degree of confidentiality and would be used for research purposes only [20-22].

Results

The study shows that the most frequency of age group distributed among study sampling parents of autism children between 31-40 and 40 and more, the percentage 44.8, the most frequency of relationship distributed among study sampling parents of autism children was the parents, the percentage 82.8, the most frequency of educational qualification distributed among study sampling parents of autism children was the collectors, the percentage 55.2, and the most frequency of presence of job distributed among study sampling parents of autism children don’t have job, the percentage 51.7 (Table 1).

Table 1: The distribution of demographic data for parents who have children with autism during the Covid epidemic (n=100)

Age Frequency Percent
20-30 6 10.3
31-40 26 44.8
40 and more 26 44.8
Relationship
Parents 48 82.8
Grandparents 2 3.4
Brother or sister 8 13.8
Educational qualification
Uneducated 5 8.6
Diploma 18 31
Collectors 32 55.2
Postgraduate 3 5.2
Presence of job
Yes 28 48.3
No 30 51.7
Total 58 100

The study shows that the most frequency of symptoms severity distributed among study sampling parents of autism children was moderate, the percentage 50 (Table 2).

Table 2: Symptoms severity among study sampling parents of autism children (n=100)

Symptoms severity Frequency
Mild 24
Moderate 29
Severe 5
Total 58

The study shows that the most frequency of presence of chronic disease distributed among study sampling parents of autism children don’t have chronic disease, the percentage 89.7 (Table 3).

Table 3: Presence of chronic disease among study sampling parents of autism children (n=100)

Presence of chronic disease Frequency
Yes 6
No 52
Total 58

The study shows that the most frequency of effect of the emerging corona virus Covid 19 on making the lives of children with autism more isolated distributed among study sampling parents of autism children was to a certain extent, the percentage 31, the most frequency of effect of the emerging corona virus Covid 19 on health condition of children with autism distributed among study sampling parents of autism children was disagree, the percentage 32.8, the most frequency effect distribution of emerging coronavirus Covid 19 pandemic on aggressive of children with autism was disagree and the percentage 32.8, and the most frequency effect distribution of emerging coronavirus Covid 19 pandemic on learning of children with autism was strongly agree and the percentage 44.8 (Table 4).

Table 4: The distribution of effect of emerging coronavirus (Covid 19) pandemic on lives of children with autism

More Isolated Frequency Percent
Strongly agree 16 27.6
Agree 10 17.2
To a certain extent 18 31
Disagree 13 22.4
Strongly disagree 1 1.7
Health condition
Strongly agree 15 25.9
Agree 7 12.1
To a certain extent 13 22.4
Disagree 19 32.8
Strongly disagree 4 6.9
Aggressive behaviour
Strongly agree 12 20.7
Agree 9 15.5
To a certain extent 14 24.1
Disagree 19 32.8
Strongly disagree 4 6.9
Effect on learning
Strongly agree 26 44.8
Agree 10 17.2
To a certain extent 11 19
Disagree 8 13.8
Strongly disagree 3 5.2
Total 58 100

The study shows that the most frequency of the distribution of enjoyable lives for parents with autistic children was to a certain extent, percentage of 39.7, the most frequency of the distribution of meaning lives for parents with [23,24] autistic children was agree, percentage of 41.4, the most frequency of the distribution of medical treatment needed for parents with autistic children was disagree, percentage of 50, the most frequency of the distribution of get supported for parents with autistic children was to a certain extent, percentage of 44.8, the most frequency of the distribution of perform duty without need help for parents with autistic children was to a certain extent, percentage of 36.2, the most frequency of the inability to access health services cause in reduced quality of life for parents with autistic children was to a certain extent, percentage of 32.8, the most frequency of the distribution of feeling physical pain for parents with autistic children was to a certain extent, percentage of 46.6, the most frequency of the concentration affected for parents with autistic children was to a certain extent, percentage of 37.9, the most frequency of the distribution of having enough energy for parents with autistic children was to a certain extent, percentage of 44.8, most frequency of the distribution of presence of enough money for daily life for parents with autistic children was to a certain extent, percentage of 43.1, the most frequency of the distribution of information availability for parents with autistic children was agree, percentage of 39.7, the most frequency of the distribution of effect of quarantine on the quality of life for parents with autistic children was to a certain extent, percentage of 43.1,most frequency of the distribution of feeling of negative emotion for parents with autistic children was to a certain extent, percentage of 41.4, the most frequency of the presence of autistic child affect the quality of life for parents with autistic children was to a certain extent, percentage of 32.8, and the most frequency of the effect of pandemic existence quality of life for parents with autistic children was agree, percentage of 32.8 (Table 5).

Table 5: The distribution of quality of life of parents who have autistic children during the Corona pandemic (n=100)

Enjoying life Frequency Percent
Strongly agree 7 12.1
Agree 14 24.1
To a certain extent 23 39.7
Disagree 5 8.6
Strongly disagree 9 15.5
Meaningful life
Strongly agree 14 24.1
Agree 24 41.4
To a certain extent 12 20.7
Disagree 3 5.2
Strongly disagree 5 8.6
Medical treatment need
Strongly agree 5 8.6
Agree 9 15.5
To a certain extent 11 19
Disagree 29 50
Strongly disagree 4 6.9
Get support
 Strongly agree 6 10.3
Agree 10 17.2
To a certain extent 26 44.8
Disagree 12 20.7
Strongly disagree 4 6.9
Perform the duty
Strongly agree 12 20.7
Agree 16 27.6
To a certain extent 21 36.2
Disagree 4 6.9
Strongly disagree 5 8.6
Access to health services
Strongly agree 2 3.4
Agree 15 25.9
To a certain extent 19 32.8
Disagree 18 31
Strongly disagree 4 6.9
Physical pain
Strongly agree 9 15.5
Agree 7 12.1
To a certain extent 27 46.6
Disagree 12 20.7
Strongly disagree 3 5.2
Effect on concentration
Strongly agree 7 12.1
Agree 12 20.7
To a certain extent 22 37.9
Disagree 15 25.9
Strongly disagree 2 3.4
Enough energy
Strongly agree 9 15.5
Agree 19 32.8
To a certain extent 26 44.8
Disagree 1 1.7
Strongly disagree 3 5.2
Enough money
Strongly agree 7 12.1
Agree 19 32.8
To a certain extent 25 43.1
Disagree 4 6.9
Strongly disagree 3 5.2
Information availability
Strongly agree 11 19
Agree 23 39.7
To a certain extent 21 36.2
Disagree 1 1.7
Strongly disagree 2 3.4
Quarantine effect on quality of life
Strongly agree 4 6.9
Agree 17 29.3
To a certain extent 25 43.1
Disagree 9 15.5
Strongly disagree 3 5.2
negative emotion
Strongly agree 8 13.8
Agree 6 10.3
To a certain extent 24 41.4
Disagree 12 20.7
Strongly disagree 8 13.8
Effect of presence autistic child
Strongly agree 15 25.9
Agree 9 15.5
To a certain extent 19 32.8
Disagree 10 17.2
Strongly disagree 5 8.6
Effect of existence of pandemic
 Strongly agree 15 25.9
Agree 19 32.8
To a certain extent 15 25.9
Disagree 3 5.2
Strongly disagree 6 10.3
Total 58 100

The study shows that the more frequency of distribution of reason that affected on quality of life during (Tables 6 and 7). The Corona pandemic among study sampling parents of autism children was Fear of disease, anxiety from gatherings with relatives and loneliness, which led to isolation and the percentage 24 [25,26].

Table 6: Distribution of reasons that affected on quality of life during the Corona pandemic among study sampling parents of autism children (n=100)

Reasons Frequency Percent
Close educational centers and external flights 2 3.4
Self-reliance, strength, confronting the pandemic and ability to save money 1 1.7
Fear of disease, anxiety from gatherings with relatives and loneliness, which led to isolation 14 24.1
The presence of the family and the closeness of each other 1 1.7
The reason for the emergence of child's behaviors and autism in significant and caring for him all the time 2 3.4
The inability to go to work because it’s self employment and lack of income 2 3.4
The strict laws, lifestyle change and lack of entertainment 8 13.8
Stress, stopping energy and positive feelings 2 3.4
Difficult access to medical help 1 1.7
Lack of communication skills, failure to develop dialogue and difficult learn sufficient skills academically, professionally and gain experience 4 6.9
Lack of exercise, training and difficulty adapting to quarantine 10 17.2
Distance education and relapse of autistic children 2 3.4
No causes 9 15.5
Total 58 100

 

Table 7: Quantitative research for analyzing the relationship between age and how having an autistic child affect the quality of life. N=100

Case Processing Summary
N  Valid percent N Cases missing percent N Total percent
Age  * Does having an autistic child affect your quality of life? 58 100.00% 0 0.00% 58 100.00%
Age  * Does having an autistic child affect your quality of life? Cross tabulation
Count  14-Does having an autistic child affect your quality of life?
Totally agree Agree Partly Don’t agree Totally don’t agree Total
Age ( 20-30) 0 0 2 1 3 6
31-40 6 5 10 4 1 26
41 and more 9 4 7 5 1 26
Total 15 9 19 10 5 58
Chi-Square Tests
Value df Asymptotic significance (2-sided)
Pearson Chi-Square 17.497a 8 0.025
Likelihood ratio 13.921 8 0.084
Linear-by-linear Association 5.841 1 0.016
N of valid cases 58

a. 11 cells (73.3%) have expected count less than 5. The minimum expected count is 52 (Table 8).

Table 8: Quantitative research for analyzing the relationship between academic qualifications and how the existence of the pandemic affect on the quality of life. N=100

Case Processing Summary
N  Valid Percent N Cases missing Percent N Total Percent
Academic qualifications  * Does having an autistic child affect your quality of life? 58 100.00% 0 0.00% 58 100.00%
Academic qualifications * Does the existence of the pandemic affect your quality of life? Cross tabulation
Count  14-Does having an autistic child affect your quality of life?
Totally agree Agree Partly Don’t agree Totally don’t agree Total
Academic qualifications (High school) 0 0 2 1 3 6
Diploma 6 5 10 4 1 26
College 9 4 7 5 1 26
Postgraduate 0 1 1 1 0 3
Total 15 9 19 10 5 58
Chi-Square Tests
Value df Asymptotic Significance (2-sided)
Pearson Chi-Square 14.805a 12 0.025
Likelihood Ratio 15.688 12 0.206
Linear-by-Linear Association 3.902 1 0.048
N of Valid Cases 58

b. The results indicate a statistically significant relationship (0.02) between age and the extent to which quality of life affects the presence of autistic children [27,28].

a. 16 cells (80.0%) have expected count less than 5. The minimum expected count is 16.

b. The results indicate a statistically significant relationship (0.03) between educational qualifications and assessment the quality of life in the presence of Covid-19 epidemic [29,30].

Discussion

The study shows that the more frequent the age group distributed among the parents of the study of autistic children between the ages of 31-40 and 40 and over, the more frequent the relationship distributed between the parents of the study sample of children with autism are the parents [31]. The previous studies mentioned parents’ perceptions of family support, the predictability of ASD symptoms, and treatment able to "control" ASD linked to parenting stress. However, the positive coping did not dilute the relationship between these perceptions and parental tension [32]. Present study showed that The study shows that the most frequency of age group distributed among study sampling parents of autism children between 31-40 and 40 and more (44.8%) , the most frequency of relationship distributed among study sampling parents of autism children was the parents. the percentage 82.8, the most frequency of educational qualification distributed among study sampling parents of autism children was the collectors (55.2%) and the most frequency of presence of job distributed among study sampling parents of autism children don’t have job, the percentage 51.7%. Another study: About effect of autism on parental quality of life in Arar city, Saudi Arabia of 84 caregivers, 63.1% had impaired QOL. The main domains affected were energy/fatigue and role [33,34].

Current study Showed that Symptoms severity among study sampling parents of autism children, The study shows that the most frequency of symptoms severity distributed among study sampling parents of autism children was moderate,( 50%). Another study: Quality of Life in Parents of Young Adults with ASD: EpiTED Cohor 38.1% of parents perceived a high impact of ASD on their QoL, 28.6% a moderate impact and 33.3% no impact. As regards subdomain scores, the daily disturbance QoL was highly impacted in 41.9% of parents, moderately impacted in 31.4% of parents, and not impacted in 26.7% of parents.

The study shows that the most frequency of effect of the emerging corona virus Covid 19 on making the lives of children with autism more isolated distributed among study sampling parents of autism children was to a certain extent, the percentage 31, the most frequency of effect of the emerging corona virus Covid 19 on health condition of children with autism distributed among study sampling parents of autism children was disagree, the percentage 32.8, the most frequency effect distribution of emerging coronavirus Covid 19 pandemic on aggressive of children with autism was disagree and the percentage 32.8, and the most frequency effect distribution of emerging coronavirus Covid 19 pandemic on learning of children with autism was strongly agree and the percentage 44.8.

Another study: Stress and emotional wellbeing of oldsters’ thanks to change in routine for youngsters with Autism Spectrum Disorder (ASD) reception during COVID-19 pandemic in Saudi Arabia. Research in Developmental Disabilities) 37 caregivers of the children/adolescent group completed the questionnaire and survey [35,36]. In the adult group, a complete of 35 ASD adults completed the questionnaire and survey, and 32 informants completed the survey. The mean evaluation window was estimated at 14.07 months SD=7.58; 95% CI in the children/ adolescent group and 9.41 months SD=4.42; 95% CI 7.95, 10.9 in the adult group. No significant differences.

And another study talk about the main areas affected are energy / fatigue and a limited role due to emotional problems. Female sex, unemployment, and low income for caregivers were important factors associated with poor quality of life. Children with autism from first-order birth who had a prolonged period of illness were more likely to be associated with poor parental quality. Sex, income, occupation, and disease duration were associated with poorer quality of life, but this was not statistically significant. Just under two-thirds of the caregivers had a poor QOL. Caregivers of children with autism need social and emotional support to help them cope with this disability.

Conclusion

The Corona epidemic has doubled the suffering of children with special needs, as the quarantine period and the reduction in the movement to go out to schools and movement have been an incomprehensible thing for them, and it is difficult for them to realize its risks, and the deterioration of their health condition has increased in light of their failure to follow the treatment and follow-up sessions in the Autism House and clinics for months Also. Children of this category are unable to express what is going on inside them towards the ongoing developments of people wearing masks and social distancing, which has been imposed in varying proportions for weeks and months, even for a short period.

The economic situation of poor families worsened the situation, as many of their heads lost work temporarily or throughout the last period, which made them live under economic and social pressures that accumulated with the epidemic, and this matter reflected, as Noura Auntung Wasito said. on the psychological state of children who did not enroll in the studies and treatment sessions and did not They mix with their friends for months, and that is why the Foundation for Care for Children with Autism. and People with Special Needs decided to reopen its doors, realizing that these children are different from other general children who follow study remotely through visual communication applications.

Limitations

• The data presented here consist of a subset of a much larger study, which aims to study the developmental pathway of Autism Spectrum Disorder.

• It was interesting to have more information on other parental variables that may be related to quality of life such as coping, depression and parental stress, and to include them in the multivariate model.

• Among the limitations, a small number of participants can be detrimental to generalizability of results.

• The improvement in this score may not be directly related to the onset of lockdown.

References

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