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Caregiving for individuals with autism spectrum disorders (ASDs) during COVID-19 lockdown was a challenge for parents. Daycare centers were closed, and parents had to provide 24-hour caregiving. Parents and children spent more time together during the pandemic. This study aimed to understand the impacts of online systems as parental support and to comprehend the parental perception regarding this type of service. Eight weeks of training were provided for the volunteer daycare centers. The centers covered a sizable group of parents of children with ASD in different age levels. A mixed-method approach for data collection was considered to understand the impacting factors. Telecommunication facilities enable daycare service providers to continue their support from a distance by enabling parents to provide care for a longer period and in a wider range during the pandemic. Parental feedback after the training course was collected. A low dropout rate was reported. Parents, in general, were satisfied with the course. Different contributing factors contributed to this satisfaction. Results also indicate that the use of online parental support is a good choice for parents in emergencies and times of lockdown. To understand the advantage and shortcomings of online parents’ training services, further studies are needed.
Institute of Nursing and Health Research, Northern Ireland
The Bahoz Center for Children with Developmental Disabilities, Iraq
*Address all correspondence to: s.samadi@ulster.ac.uk
1. Introduction
There are different applications for technology in the field of healthcare and training [1]. The electronic technologies as a flexible modality provided different forms of application ranging from ordinary day-to-day applications of messaging, phone calls, emails, voice messages, video recording to high technologies such as programs for special purposes, complex equipment to reduce the likelihood of reducing educational, administrative, and fiscal resources, and extend the coverage of the knowledge with a more reasonable effort. Smartphones and other mobile devices technology are more accessible because of their widespread availability and flexibility for being applied by different groups of people with different levels of knowledge [2]. Using available technologies cost-effectively provides a unique platform to healthcare, engagement, and intervenes with a different group of individuals such as people with special needs. As Camden et al. [3] concluded in their review, “Available communication technology can be particularly well suited to implementing best practices for children with disabilities when the focus of the therapies is on supporting the children and their families, problem-solving with them to foster the child’s development and functioning.” Hence, the application of telecommunication facilities has rarely been studied for children with developmental disabilities, a promising result has been reported for groups such as children with autism spectrum disorders (ASDs) based on the available data. Additionally, there is evidence for using communication technology for individuals with ASD at different age levels. Pilot findings indicate improved aspects of the services and potential benefits [4]. Parents are deemed active agents in this approach and through accessing proper training and continuous supervision; they can deliver the intervention more effectively [5]. Improving parent knowledge, increasing the level of fidelity in parent intervention, and improving reciprocity and communication abilities for children with ASD are reported in a review on different studies about parent-mediated online training [6, 7]. The term “online parental support services” is a general term to indicate the application of electronic technology in delivering training services to boost parental knowledge in caregiving for their children as a way for delivering professional caregiving services at a distance through connecting the service provider to parents. This type of service is also used for online supervising the activities such as intervention, assessment, and consultation [8].
Different forms of online services have previously been available for parents of children with various types of developmental disabilities; hence, this approach has been brought to attention after the lockdown due to the COVID-19 pandemic and its potential brought to attention from different perspectives. This approach was substituted with the traditional face-to-face approach to provide several services from diagnosis to rehabilitation, training, and caregiving for different types of developmental disabilities. This newly focused approach has advantages over previously practiced methods of service and support provision and might be added to the list of publicly accessible services for individuals with developmental disabilities and their families and parents even after the lockdown.
A part of the finding of this study has already been published in the form of a feasibility study in 2020 [9], but in this chapter, extensive findings of this study will be presented in more detail.
A series of studies from 2010 to 2013 was undertaken in Iran to understand parental knowledge needs and to address these needs [10, 11, 12]. The outcome was a tailored parent-focused program [13, 14]. A biopsychosocial model of disability is considered for the program. There were different booklets on different aspects of ASD in a lay language on different issues regarding ASD and a toolkit consisting of a set of practical advice in the printed form to boost parental knowledge through activities of daily living and play. The printed matters offer practical information and applicable advice to improve communication and to extend its levels at different stages of child development. Parents are prepared with basic knowledge on the understanding of their child’s level of abilities and disabilities employing simple self-completed checklists. Modifying environments to address the child’s sensory preferences and various strategies to impact different developmental areas were also considered in the preparation of the booklets. It was also expected that the booklets would enable and empower parents to make decisions about what their child needs to learn.
Based on the WHO [15] and UNESCO [16] recommendation, care providing centers for individuals with ASD similar to all other caregiving centers stopped their routine services and adopted self-induced lockdown. This recommendation was a general obligation for all educational and daycare centers around the world. Lockdown in Iran lasted over 2 months from March to May 2020. Application of telecommunication facilities to deliver different services at a distance and connecting caregiving centers to parents were the most applicable approach during this time. There are over a hundred caregiving centers for individuals with ASD in Iran that provide daily care for children with ASD in an age range from 3 to 14 years old. These centers are under the umbrella of the Iranian Social Welfare Organization (ISWO). Daily educational and rehabilitation services are provided by these centers and are they are active for 4 hours in the morning to provide these services. The government pays for most of the services. Caregiving centers have the right to provide afternoon services that include rehabilitation, vocational and extracurricular services through expenses paid by parents.
1.1 Iran profile
The ISWO and Ministry of Health have been considered as the ASD services providers while the Iranian Special Education Organization (ISEO) is responsible for educational services. Almost 90% of healthcare services for individuals with ASD are provided through governmental services [17]. These services are recently improved to cover a bigger group of this population [18]. ISWO provides clinical and vocational training services to preschoolers with physical and intellectual disabilities and individuals with severe forms of developmental disabilities who are considered by educational services as not being able to benefit special or mainstream schools. While a group of financially able parents pay for parts of the services or the extra needed support, the government pays for most of the individuals’ expenses. A group of individuals with developmental disabilities who are registered in mainstream schools also attend these centers after graduation from their schools because of the available services such as vocational or another type of special training or rehabilitation. Families contribute to these costs.
From an electronic and telecommunication services perspective and in terms of numbers, Iran ranked first in the Middle Eastern area concerning satisfactory Internet infrastructures and 43 million users [19], similar to other countries, widespread use of smartphones, social media [20], and computers throughout the country daycare centers was able to provide some aspects of online parental supports through video conference to deliver some types of educational services and providing consults and instructions [21].
Although other studies logically stress the crucial rule of different organizational characteristics and processes for providing the support and resources for preparing therapists and practitioners to implement new models of practices, at the COVID-19-imposed situation, it seemed that the only possible way to survive was shortcutting all the previously mentioned factors such as funding the time and cost of consistent and qualified supervision, organizational support for evidence-based practice [22], and starting the training with the minimal necessary factors. One of the most important factors for successful dissemination of the online courses and application of telecommunication for children with ASD was that their parents who were already reluctant in being engaged in direct service provisions for their children were asked the closed daily caregiving centers for a practical solution and have different queries regarding pieces of advice for keeping them active and fruitful for their children with ASD at home. The most important element in the successful dissemination of these newly developing models is to consider training facilities for parents according to their needs [23].
The ISWO decided to provide online services to parents through their daycare centers during the 3-month lockdown in time of pandemic COVID-19. Staying active and being able to service provision for parents who were urgently needed to assist with their continuous caregiving was one of the aims. Assisting parents and extending their abilities to become active participants in service providing made the different types of training facilities a must for them. This is a difficult aim to attain because of the lack of highly trained professionals in different filed of services for individuals with ASD.
Hence, the most important advantage for children with ASD was the emphasis on the implementation of different strategies in their natural environment, where they spend most of the time, and where strategies can be applied over different available opportunities.
Caregiving centers and parents were not well prepared for the shift of services, but the most practical solution for a potential group of nearly 10,000 children who were registered in these centers and 14,000 staff members who were working in different units of these centers based on ISWO’s report. They were all in danger of being negatively impacted due to the unpredictable serious health-threatening situation, which forced them to keep distancing for an unclear period. Telecommunication was an accessible solution. Care-providing centers already used different social media platforms to contact parents. The contacts were on their way and in a passive form of sharing various information.
During the lockdown, parents can use mobile-based technology, to keep in contact with the professional caregiving centers, while interacting with their child under the remote supervision and coaching of the professionals. The information that is provided is interactively based on the need of the individuals, which is filtered by supervisors who are assisting key persons who in turn act under the supervision of a senior consultant in ISWO on ASD research and training courses. Parents receive guidance to be able to provide services for their children at their home using functional daily activities. This approach can save money and time to both caregivers and parents while offering relief to ISWO as the main service provider for individuals with developmental disabilities. To understand the applicability of online services for parent training under the supervision of the caregiving center during the COVID-19 lockdown in an area with limited caregiving centers and professional services for individuals with ASD.
This chapter reports findings of a study that set out to examine the ease with which online training can be implemented in the home setting through the continuous supervision from the daycare centers and the needed levels of engagement that parents need to perceive to find the service satisfactory through their self-rating reports and caregiving centers’ judgment.
For the present reported finding, an online model was developed. In this model daily training sessions, for parents, are administered by the caregiving centers, with direct daily remotely supervision and coaching by a professional senior consultant in the field of ASD considered. It was decided to provide information for parents through online sources, which cover different areas of caregiving with the main focus on play as a modality to facilitate communication and to understand behavioral challenges and the way they could be managed and considering functional daily living skills using different types of play, exercises, and tasks. For each part, there were separate tutorial video clips along with written and oral information and rubrics that parents might find useful. (See the following link)
The main aim for developing an online parental training under the supervision of the daycare centers was to act with parents of children with ASD based on the following finding reports from Schmidt and Taylor [24]: (a) freeing up time from other clinical work for training; (b) access to reading materials; (c) high-quality supervision and comprehensive training; (d) peer-learning working groups; and (e) program evaluation support adoption of empirically supported interventions. All these items are considered as factors that identified to be critical for therapists and practitioners to adopt a model for intervention into practical usage. Parsons et al., [6] in a review suggest that compared with the texts and written information, video-based parental training intervention was reported to be more effective. Furthermore, answering parental questions by professional and coaching provision based on a daily or weekly schedule compared with a self-directed program proved to be more effective in the following areas: (1) intervention appropriateness, (2) program completion, (3) parent intervention fidelity, (4) parent engagement, and (5) parent’s positive perception of their child condition.
To understand the daycare service providers’ ideas about the possible parental information needs, five 1-hour online group sessions are held. The focus group consisted of the head of the 50 selected active daycare centers based on their experience and ISWO’s criteria. The final output of the session was to recruit active and eager centers and to answer the following questions:
Is it possible to provide a parental support program through the online system for parents of individuals with ASD in developing countries?
How the contributing factors of parents’ positive attitudes toward the online service provision for them and their children with ASD in the absence of in-person daycare center services are understood?
How the implication and effectiveness of online training courses for parents could be increased?
This study aims to determine the uptake by daycare centers and parents in an online course and understand the reason for any negative attitudes and possible dropouts of the parents. The impacts of online parental training on the center staff, their reactions to the program and monitoring the work undertaken by parents and center staff are focused as well.
To allow for a more thorough understanding of the variables, a mixed-methods approach for data collection and analysis was used. A critical and necessary step that prepares bases for collaborative problem-solving, which allows for regarding supports to enhance a health innovation’s perceived fit within community settings, is to adopt a mixed approach to data collection and analysis [25]. Currently, the available wealth of data focuses on quantitative aspects of impacts of online training for parents and parent-mediated intervention, parents and practitioners’ perceptions as the main stakeholders of this service delivery model have yet to be examined as a primary outcome variable [26], which is possible to understand concerning the qualitative aspect of the programs. This study used both parents and online training provider centers personnel as key stakeholders and a mixed-methods approach to examine their perceptions of the presented online course. Overall, the parents and staff involved in the 30 daycare centers were volunteered to participate in 2 months of online service provision for parents in which the provided information is used. The withdrawn centers were reluctant to participate and mostly preferred to standby and wait for the center reopening and going back to their usual routine of face-to-face services.
The following resources are made available to the centers who then share with parents.
Preparing the child and environment (scales to check to evaluate parents, children, and environment) consisting of general rules regarding items they should check with their children before the session and one 12-item checklist for considering the environment. Over a hundred pictures and video clips were shared from parents before considering the items and right after they reordered, it was checked as the first step of the process with the center key persons sending feedback to each parent. They had one 11-item checklist to consider while checking parental clips and pictures.
Evaluating the child (different easy to administer checklists for different purposes). Parents had 12 checklists to evaluate the different abilities of their children based on the training domain that caregivers wish to consider their child’s abilities (attention, play, preferred reinforcement, sensory issues, …). They had all the checklists but were supervised by the key person during the evaluation.
Considering a task to follow (activity, exercise, play). Based on different booklets and online sources, parents are encouraged to make different activities, exercises, play suitable for their children.
Making easy-to-use tools, toys, and content. To attain the desired goal in different sensory/motor, cognitive, and communicational domains, parents are encouraged to make suitable tools
Evaluating the attainment of the goal (evaluating the child and parental task administration), which is done online for each aim based on parental impression and the centers tracking system (graphs)
The main source for all the above activities was the Omid program [13, 14] for parents and caregivers. Each center prepared one special individual schedule for each individual with two daily 45 minutes virtual meeting sessions (one in the morning, one in the evening).
General data regarding each step were shared in each center’s parental group, and each individual was tracked by the key person individually through daily contacts that each center had with the caregivers.
Data were shared from each center with the course coordinator, each center received feedback and suggestions based on the information they provided.
A key person’s level of activities in the group based on meeting the deadlines, providing the requested information, and the number of shared documents (videos, voices, and pictures) from their centers was also rated.
The present data were collected over 8 weeks of consecutive daily service provision for 30 centers for children with ASD in different geographical areas of the country. In the beginning, parents were asked about their main challenges regarding their child’s caregiving at the time of lockdown. They also rated parental perception of the severity of ASD symptoms from the parents to understand the way that parental understanding regarding the ASD severity in their child by using self-rated scales also considered. Online training provider centers were also tried to rate parental engagement in the caregiving process through their online activities, attained objectives, shared data, and provided the demanded documents. Parental satisfaction with caregiving was also evaluated. Parents’ and daycare centers’ attitudes on the online course were also evaluated before the course.
During the training sessions, centers were trying to improve interaction among child and parent in a modified home setting employing behavioral techniques and structured teaching strategies by pictures and objects and considering daily routines. The sessions were developed considering a weekly curriculum focusing on communication, sensory, and cognitive domains. Parents were coached through sharing short video clips, pictures, and online sources and encouraged to imitate a similar approach and video application of the information at home. All the home-based session was monitored by the centers’ key person, and the biweekly data were prepared and transferred by the key person to the course supervisor. Telecommunication facilities such as mobile phones and tablets or similar devices, home Internet access, the freeware program (in this study, WhatApp version 4.0.0 with the free calling feature applied) for document and link sharing, online video callings, observing the home session, and coaching the parent were used. The centers’ key person provided feedback, prompts, and training for proper application of the recommended strategies. Besides, there was a virtual meeting place for sharing information and contacting the ASD professionals to answer questions. Entire sessions were video-recorded by centers for understanding the parental question and to help with updating the training.
Pre- and post-measures design employed to understand the quantitative impacts of online training and all measurements applied twice over the study period. Assessment measures administered at pre and post-course were as follows:
Demographic questionnaire to collect data on parents and children’s data and associated challenges with caregiving, online course, provision style, and the quality of information and provided support.
A fidelity rubric was also devised to analyze videos considering 10 items that were the most important factor and the most ignored items, which might happen in an online training program; environment modification and consistency with arranging areas that need to be considered for training different subjects, stimulus control, using a visual warning to notify about the presence of the uncontrolled stimulus, giving the choice for the individual and time pausing between the request repetition, flexibility with the places that the individual prefers to stay in time of training, interpretation of the individual’s responses, visually notifying the starting point, flexibility and creativity in play, tool application and toy making, temper control in time of training, applying visual icon to indicate the end of a task or training session.
Parents were asked to rate the course and also caregiving centers tried to score parental engagement in the course using a Likert Scale, the centers and their key persons were also evaluated at the end of the course.
There were 30 active daycare centers in this study located in 19 (61%) provinces out of 31 provinces across the country. Each center introduced a key person as the main person who supervises parents’ daily activities and collects information. The key persons’ demographic information is presented in Table 1.
Psychologist 19 (63%) Occupational Therapist 5 (18%) Speech and Language Therapist 2 (7%) Educational Science 3 (10%) General Health 1 (3%)
Experience with ASD in years
Mean (8.26) SD (3.23) (Max 15, Min 1)
Table 1.
The key persons’ demographic data.
Twenty-one (70%) participants of the daycare centers who were acting as the key person already participated in the professional training courses that ISWO had for its under supervision ASD centers [26, 30], while nine (30%) centers key persons did not participate in these courses previously. A significant statistical relationship was reported between the parental fidelity score and the key persons’ previous participation in ASD professional training course presented by ISWO (df = 2, N = 336) = 8.32, p = .016. While a similar level of significance was not reported between parental fidelity level and key persons’ participation in the professional training courses on ASD.
3.1.2 Parents’ findings
Out of 417 parents, data of 336 who finishes 8 weeks of the online training course were considered for the final analysis. A dropout rate of 19% (81 parents) was reported. The demographic information of this group is cited in Table 2.
Non-university education: 210 (62.5%) University Education: 126 (37.7%)
Parents Profession
Housewife: 216 (64%) Public work: 60 (18%) Technician: 26 (8%) Education: 16 (5%) Medical and Health: 14 (4%) Unemployed: 4 (1%)
assistance with caregiving
Yes: 192 (57%) No: 144 (43%)
Table 2.
Demographic data of parents.
Parents before and after the course were requested to rate their ideas regarding the online training course in choosing one of the three choices of having no ideas, negative, and positive. A comparison of the parents’ attitudes toward the online course using the Pearson product-moment correlations test yield r = −0.261. p < .00. This indicates a low negative correlation, which might impact parental mainly negative attitudes at the beginning of the course changed to a positive. Meanwhile, there were changes in attitudes of parents who had no ideas or showed negative attitudes toward online courses.
There was a statistically significant relationship between the child’s age and level of satisfaction with the online course and younger children’s parents were more satisfied with the online support X2 (df = 2, N = 336) = 1.17, p < .00. Similar statistically significant relationship found between parental age and their satisfaction with the online course before course X2 (df = 2, N = 336) = 10.53, p = .005 and after the course X2 (df = 2, N = 336) = 10.61, p < .00. Younger parents were more satisfied with the course compared with the older ones.
Parents of children with double-diagnosis attitudes toward the online course before (X2 “df = 2 N = 336” =8.43 p = .015) and after the course (X2 “df = 2 N = 336” =9.72 p = .007) were significantly different, and parents of children who had another accompanying diagnosis along with ASD were less satisfied with the online support.
Parents who speculate to have a family member as the assistant were statistically more satisfied with the online course before X2 (df = 2, N = 336) = 1.07, p < .00 and after the course X2 (df = 2, N = 336) = 23.57, p < .00.
The key persons’ and parents’ fidelity in applying the recommended practices was observed using two different rubrics. A comparison of the Chi-square test showed that there is a significant relationship between the two variables of the level of fidelity of key persons and parents. Key persons who gained higher scores in the fidelity rubric are more likely to supervise parents with higher scores of fidelities in the implementation of the suggested items in a different session with their children, X2 (df = 6, N = 336) = 32.46, p < .00.
Regarding parents’ fidelity level and their final attitudes toward the online course (having a positive or negative attitude), the finding indicated a statistically significant relationship (X2 “df =6, N= 336” = 74.18, p < .00). This means that parents who received a higher score for their fidelity in the program administration were more satisfied with the online support. While parents who were less considered the presented information (received a lower score of fidelity) were less satisfied with the program.
Figure 1 shows the parents’ attitudes regarding the course after 8 weeks of the online training course that was in a range from 25 (7.4%) positive to 205 (61%). A comparison of the parents’ attitudes toward the online course yield r = −0.261. p < .00. This indicates a low negative correlation, which might impact parental mainly negative attitudes at the beginning of the course changed to a positive. Meanwhile, there were changes in attitudes of parents who had no ideas or showed negative attitudes toward online courses.
Figure 1.
Parents attitude regarding the online course before and after the course.
Parents’ main complaint about caregiving during the lockdown before and after the online course changed, and the percentage of the items they pointed to as the main problem in continuous caregiving was altered. There was a significant difference between parents’ main complaints about caregiving during the lockdown before and after the online course based on the results of the Pearson product-moment correlations test (r = .36, p = .00).
Each caregiver’s biweekly objectives were considered for the child under the observation and guidance of the key person from the center in which he/she was registered. They also followed the number of attained objectives on a biweekly time interval (this number was in a range between 0 and a maximum of 7). Table 3 shows the objective considered through parents’ suggestion in all for each round of biweekly reporting (the maximum and minimum in each domain are mentioned). Meanwhile, unattained objectives, which were less considered in each round of reporting, are shown in Table 4.
Objective domain
Reporting period
Max.
Min.
Sum
Mean
SD
Cognitive
1st Biweekly
5
0
1153
3.43
0.98
Communication
1st Biweekly
4
0
940
2.79
1.20
Sensory/Motor
1st Biweekly
5
0
1101
3.27
1.42
Cognitive
2nd Biweekly
6
0
1284
3.82
1.42
Communication
2nd Biweekly
5
0
976
2.90
1.42
Sensory/Motor
2nd Biweekly
5
0
1137
3.38
1.51
Cognitive
3rd Biweekly
7
0
1324
3.94
1.52
Communication
3rd Biweekly
6
0
971
2.88
1.54
Sensory/Motor
3rd Biweekly
6
0
1213
3.61
1.64
Cognitive
4th Biweekly
7
0
1496
4.45
1.40
Communication
4th Biweekly
7
0
1154
3.43
1.78
Sensory/Motor
4th Biweekly
7
0
1320
3.92
1.77
Table 3.
Number and range of parents’ considered objectives in each domain based on biweekly reports (N = 336).
Objective domain
Reporting period
Sum
Percentage (%)
Cognitive
1st Biweekly
47
14
Communication
1st Biweekly
168
50
Sensory/Motor
1st Biweekly
121
36
Number of parents with no unattained objectives
1st Biweekly
0
—
Sum
336
Communication
2nd Biweekly
159
47
Sensory/Motor
2nd Biweekly
105
31
Number of parents with no unattained objectives
2nd Biweekly
15
5
Sum
279
Cognitive
3rd Biweekly
57
17
Communication
3rd Biweekly
172
51
Sensory/Motor
3rd Biweekly
103
30
Number of parents with no unattained objectives
3rd Biweekly
4
3
332
Cognitive
4th Biweekly
38
11
Communication
4th Biweekly
154
46
Sensory/Motor
4th Biweekly
101
30
Number of parents with no unattained objectives
4th Biweekly
43
13
Sum
293
Table 4.
Number of parents’ unattained objectives in each domain based on biweekly reports (N = 336).
Analysis indicated that attaining cognitive (learning about color, shape, numbers, and other academic items) objectives were more possible to attain for parents, and the number of unattained cognitive objectives was lower than 15% each biweekly. While attaining communicational objectives through exercises, play, and activities was the most challenging item to attain. Tasks with a sensory-motor nature were at a mid-level of difficulty to attain for parents.
To assess parents’ impression of children’s symptoms severity before and after the online course, they were asked to score the child’s basic ASD features using the screening scale. The correlation between two scorings was r = 0.919, p < .00. Similar comparisons have been done regarding parental impression on their child’s behavioral (r = 0.931, p < .00), communication (r = 0.975, p < .00), and social (r = 0.813, p < .00) aspects using GARS2 scale. Parents were asked to score their satisfaction with caregiving before and after the online course, and the results from the pretest (M = 27.18, SD = 9.05) and posttest (M = 42.72, SD = 14.27) PSCS indicate that caregiving under the supervision of the daycare center for a child with ASD resulted in an improvement in satisfaction with caregiving (t = 21.87, df = 335, p < .000).
Finally, to assess parents’ effectiveness in their children’s engagement in the daily caregiving, their final videos (provided for the final biweekly reporting) were sore by the centers’ key person using a fidelity scale. Ten videos were rescored by the author and the number of agreements/number of agreements plus disagreements were considered and inter-rater reliability was reported as 85%.
Findings indicated that there is a significant and strong correlation between parental satisfaction with caregiving at time two and after the online course and their fidelity score (r = 0.85, p < .00) while this correlation for time 1 was very low (r = 27).
3.2 Qualitative results
This part of the chapter is a descriptive qualitative approach that utilized semistructured online interviews and in-depth content analysis. This is done to assess parents’ attitudes and perceptions of the effectiveness of the online course and using social media and telecommunication technology, after the study they were requested to give feedback. Both groups of parents who participated completely and parents who dropout invited and 50 (eight from parents who dropped out and 42 from parents who finished the online course) responses were sent (20 voice messages and 30 written comments). In a closed question regarding the parental ideas all parents give admitted (ticked yes as their answer) to the question regarding their agreement with parental engagement in the daily caregiving for children with ASD. Parents found the telecommunication application easy and user-friendly. Hence, among 41 parents who continued online course, only three parents (7%) did not want to continue online support; because of the additional financial demands, which this newly developing service forced them to pay for; or the technical issues such as the wideness of the internet band and limitation of the data transferring speed, the rest 38 (93%) parents thought that because they found the online support, they continue to stay tuned for similar opportunities, recommend it to other parents, and consider as a useful service choice.
Nevertheless, all eight dropout parents who agreed to give feedback regarding the online services said that they do not persuade those online services are a sufficient service for children with ASD and their parents. Based on the topics presented in the current literature on online parental training courses, specific but open-ended online interview questions were devised that met the project aim of understanding the entire course participants’ perspective. These were categorized into three main themes: (a) interfering with the duties, (b) extra demands, and (c) lack of understanding parenting (Table 5).
Theme
Subtheme
Definition
Quotation
Category
Interfering of the duties
Distribution of duties
Different stakeholders should have different duties
[Mother no.1]. “I could not find any advantages in this training course. Difficult to say because we had no one to give us a hand and we found it very difficult to get along with our son so we hardly found any advantage in this online service. This is not our job; we are not trainers or therapists.”
Issues with the professional caregiving
Quality of professional caregiving
Parental professional support is not as effective as the therapists
[Father no.2]. “This is not good I am against this approach children with autism do not learn at home. We cannot do what the trainers do. This is why we bring our children to the centers and do not keep them at home.”
Extra demands
Learning new tasks
Parents have different commitments and lack of time
[Mother no.5]. “My son has a sleeping problem. He rarely sleeps. I have to handle different duties and during the lockdown, they have been doubled, I have no extra time to do what has been told to me. If I had more time or assistance at home it would have been more manageable.”
Extending the range of caregiving duties
Financial pressure
Internet expenses
[Father no. 7]. “The internet was a big problem for us. We had to pay extra expenses to top up the system every week. This is important for us to be cautious about the extra expenses in this economically difficult time. I am unemployed because of the various now.”
Lack of understanding parenting
Asking for sharing voice recording, video taking, and picture sharing
Social stigma
[Mother no.5]. “I am reluctant to take a personal video of my child and to share it with others. I wish we could have more substituted ways of getting advice and recommendation instead of asking for videos or pictures.”
Boosting levels of parent understanding Among service providers
limited vision on caregiving
Having no sympathy with parents and caregivers
[Father no.2] “You do not know about being a parent for these children. Have a look at your new style of support, it should cover a wide range of children. What was offered was not suitable for all. We accept the responsibility of sending our children to daycare centers again. This is better for all. We know that you are doing your best but this is not going to be useful and does not work out.” [Mother no.8] “Try to understand our situation. Just make safe places at school and reopen the centers as before.”
Table 5.
Parents who dropped out of the program and their interview extracted themes.
They raised different issues such as putting extra pressure on parents, advantageous for the center because regardless of being closed, using online services caused them to receive governmental financial aid while the responsibilities of child caregiving will remain on parents.
Parents in both satisfied and dissatisfied groups indicated some negative aspects of an online prenatal training program such as videos and pictures sharing of their child although they are guaranteed that documents will be protected and used for this study will not be used or seen by the others.
Parents who did not finish the course were asked about any proposals about the other desired training opportunities for them. They generally requested for centers reopening, or some of them asked for private home teaching services for their children.
Those parents stayed with the online course and finished 8 weeks of support invited to answer an online questionnaire consisting of six open questions: 1. Leading advantages of the online training support, 2. The main shortcoming of the program, 3. Your suggestions for improving the online training opportunity, 4. What part was the most useful for you? 5. What part was less useful for you? 6. Any further comments and suggestions.
Parents mostly said that the greatest advantage of the course was assisting them while they were under pressure for continuous caregiving. A mother said: [No.12] “We got the opportunity of testing our abilities in managing our child and acting as the trainers for the first time.”
Nearly all of them considered entire parts of the online support useful, and some of them mentioned special functional ideas for fine and gross motor improvement or parts of the behavioral suggestions for educating children as the most appropriate part for them. They suggested various issues for improving the online support but mostly recommended receiving hard copies and different video audio resources in the form of training packages. A father said: [No.27] “I do recommend the preparation of parents for similar situations. To supply us with some special packages such as internet access multipurpose training and educational tools.” Similar suggestions and recommendations were repeated in response to the final question. A mother said: [No. 34] “Since most of our children are fascinated by the gadgets it’s better to have some apps and computer software to help us. I recommend the preparation of parents for similar situations. To supply us with some special packages such as internet access multipurpose training and educational tools. It was a perfect opportunity. Thank you very much, but it can be improved.”
In recent years, the availability of online training courses and usage of technologies in service provision and also its impacts on consumers and the level of the acceptance of its application by regulatory agencies alike received attention from the developed societies. It has rarely been studied and developed in developing countries. At present with the forceful lockdown due to the pandemic COVID-19, the only available services seem to be the application of accessible technology to address the growing needs of children with ASD and their families. In addition to reviewing the experience of the developed countries and adopting the research summaries, policymakers in the developing countries are encouraged to understand and to determine what may be useful to them in practice. Results indicate that online training courses for parents training supervised by daycare centers for parents of individuals with ASD could be listed as applicable support for parents of children with ASD as assistance for facilitating continuous caregiving due to conditions such as the imposed lockdown due to pandemic.
Regarding the first question of this study and asking about the feasibility of the online training course, finding indicating that online training course might be a feasible approach and worth developing in developing countries with the lack of professional and restriction of accessible services and supports in distant geographical areas especially the rural parts [31] and for ASD in particular [32]. Findings indicated that prepared and qualified daycare centers’ staff through utilizing telecommunication facilities can enter the parents’ living places virtually and assist them while caring for their offspring in their natural setting. The practice environment is under professional observation without any extra time and expenses. The presented finding indicated that the imposed new online training course-based treatment models in which parents are acting as the main program administrators under the supervisor of the daycare centers might be considered as a feasible approach to consider [33].
Parents are known to be the best and the easiest to access, influential factors in both human and animal child’s development trajectory [34]. For children with an ASD, extensive weekly hours have been recommended for working in most of the approved and recommended approaches of early intervention services [35]. After the pandemic COVID-19 and the forceful shutdown of the daycare centers for children with ASD in most of the countries around the world and the necessity of continuous service provision and round-the-clock service provision from the parents, a new aspect of parents (parental)-based services emerged. The role of parents as the main base in intervention has already been stressed because the care providers are the ones who know the child best and know about his/her needs. On the other hand, children and parents were forcefully kept in the lockdown and parent skill updating and service providing for caregiving are essential in assisting children with ASD to continue their progress toward the highest level of potential functionality during the lockdown period. Parents’ available mobile-based technology enables daycare service providers to continue their services via engaging them more effectively than ever before through the facilities this system offered most of the time free of charge and to promote their child’s development every day [35]. Parents’ general approval of the online support and positive attitudes with the online course and having a low level of dropout might also indicate the viability of this service. They provided an opportunity for information provision boosted parental knowledge regarding the main challenges of caretaking for their children helped them to attribute their child most challenging features to the core symptoms of ASD (communication) and pointed to it as their main source of complaining, which might help them to focus on increasing their augmentative communication approaches and nonverbal-communication skills [36].
The second question of this study regarding the contributing factors for developing successful online support, findings indicate that several factors might contribute to parents’ satisfaction with online services. Factors such as the age of the child, when children with ASD are younger parents, are more optimistic about the course and its impact. This is a reason for the focusing of the present studies of online training and ASD on young children [37]. Younger parents also were more positive regarding the online course, which has been reported in other services for individuals with ASD in a comparable cultural situation to present sample such as Saudi Arabia [38]. It also found that receiving help at home is a powerful predictor of parental satisfaction with online support [26]. It was also found that parents were more successful in attaining academic objectives for their children with ASD, similar findings reported in other studies when regular training opportunities were offered to parents of children with ASD [39]. This is an indicator of the difficulty of gaining and training the communication aims and objectives for individuals with ASD. The online service providers should consider the bases of communication to motivate individuals with ASD to start the collective attention that is a basic skill for social attention and social interaction [40]. Techniques such as Picture Exchange Communication System (PECS) [41] could be a very applicable strategy to consider in developing similar online courses.
Finally, in answering the third question of this study regarding increasing the implication of online training course services and boosting their affectivity, some elements needed to be considered. Parental feedback indicated mostly positive findings regarding the level of comfort using the technology and the perceived benefits of this approach, with some reservations regarding preference for online training course sessions at home versus daycare sessions.
It is of interest to note that the parents differed regarding the perceived benefit of the online session as compared with the face-to-face daycare sessions, and that this difference was correlated with the parents’ fidelity score in administering the suggested activities a finding, which is previously reported [42]. Follow-up study is needed to carefully monitor the level of fidelity of implementation of the strategies used by the parents at home after the round of the online course and data collection period. Regarding the increasing of the implication of online training courses although ISWO admitted that its daycare ASD centers survived and children received their needed services, there are some cost-benefit analyses of the present finding that are needed to conduct in terms of financial, time, and general health system to prove the applicability of this approach. The child with ASD educational setting extension is another benefit of this model. Internet technology has its limitations as well, and not all parents are likely candidates for this type of technology as some of them were seriously commented against and left the course and had their justifications about this. Besides providing a service provision system in the time of emergency remotely, daycare centers might be able to appoint children and parents who might be beneficial candidates to use online training courses.
There are some serious limitations with the present finding first of all the course was prepared in an emergency in which no other services or choices were available. Therefore, the lack of a control group to receive comparable services in a face-to-face setting was a problem that was out of control and could not be addressed. Although online training course applications hold promise as a way of addressing some of the parents’ challenges during a time of continuous caregiving situation, hence, there is still a lack of enough evidence for understanding the probable shortcoming and limitations of the online training course and the way that various rehabilitation, other interventions, assessments, and training protocols may be used through the online training course. Further studies are needed to identify the parents and type of services in which the online training course delivery system is appropriate or is not. Such comparative studies will contribute service providers to selecting an online training course delivery model for the appropriate group who might get more benefit. The versatility of online training courses allows daycare centers and parents to survive during a difficult time, but there are some other interventions or practices that are not compatible with this newly developing modality.
However, with present evidence obtained from a sizable group of parents and increasing the prevalence rate of ASD globally and in developing countries, the service system in the developing countries faces increasing barriers to meet the needs of parents and individuals with ASD. Of all available support and service delivery approaches, the online training course model has provided some basic evidence to support its potential to address many challenges associated with caregiving for people with ASD. Although parents who dropped provide valuable insights regarding financial, technical, and ethical challenges facing online training courses. Application of the online training course and using telecommunication and mobile-based similar services should be strengthened via supervision and guidance of approved ethical considerations and protocols.
For families in the most rural parts of the country, we need a better understanding of whether provider or caregiver training is feasible or effective when delivered entirely through the online training course. Specifically, we need to know whether such families have access to smartphones, computers, webcams, and Internet or clinical sites equipped with such video-conferencing technology to facilitate online training course encounters. Nevertheless, parents should be notified that online training course is not considered to be substituted with the in-person daycare services as it is echoed in the ideas of some parents who dropped out from the course; however, at present addressing parents concerned regarding meeting children with ASD rehabilitation and educational needs in a safe and healthy environment is the main focus of the service providers. The described model for care provision has the purpose of being considered as an effective choice and does not have the purpose of replacing all aspects of the services in which some of them are preferable in-person.
The entire project has been done by my own expanses, and no financial support and assistance are provided by the governmental and nongovernmental organizations.
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Written By
Sayyed Ali Samadi
Submitted: 27 August 2021Reviewed: 31 January 2022Published: 02 April 2022
Open access peer-reviewed chapter
