A total of 62 individuals participated in this study (see Table
2 and Table
3 for participants’ characteristics). After qualitative data synthesis, nine main themes and 23 sub-themes were extracted from the participants’ declarations. Theme trees supporting our results are available as Additional file
3. The results of this study are presented in three main sections: participants’ viewpoints about implementation of ASD screening programs, challenges of ASD universal screening program in, and participants’ recommendations to overcome the challenges. To keep participants anonymous, given that the participants were approximately homogenous in terms of age, education, degree, experience, etc., and their main distinctive feature was their main role, only the main role of the professionals were used at the end of the quotes.
Table 2
Characteristics of the representatives of ASD children (32 participants in the FGDs)
Item | Mean | Standard Deviation |
Age of the participant (parent) | 39.5 | 6.48 |
2003Age of child | 7.5 | 1.9 |
Item | Frequency | Percentage |
Sex of the participant |
Male | 20 | 62.5% |
Female | 12 | 37.5% |
Sex of child |
Male | 25 | 78% |
Female | 7 | 22% |
Education of the participant |
Elementary | 10 | 31% |
Diploma | 10 | 31% |
Bachelor | 11 | 35% |
Master | 1 | 3% |
Occupation of the participant |
Home-maker | 15 | 47% |
Staff | 8 | 25% |
Worker | 3 | 10% |
Self-employed | 2 | 6% |
Physician/Nurse | 3 | 9% |
Retired | 1 | 3% |
Table 3
Characteristics of the representatives of health system (30 participants in the interviews)
1 | Psychiatrist (n = 8) | • Male (n = 6) • Female (n = 2) | • Child & Adolescent Psychiatry (n = 5) • Psychiatry (n = 3) | • Faculty member (n = 8) • Head of a psychiatry clinic/center (n = 3) | • Treatment and diagnosis of children with ASD |
2 | Pediatrist (n = 6) | • Male (n = 6) | • Pediatrics (n = 4) • Pediatrics neurology (n = 2) | • Faculty member (n = 4) • Head of the children hospital/clinic (n = 2) | • Treatment of children with ASD |
3 | Therapist (n = 4) | • Male (n = 4) | • Speech therapy (n = 2) • Occupation therapy (n = 2) | • Faculty member (n = 4) | • Treatment of children with ASD |
4 | Administrator (n = 8) | • Male (n = 6) • Female (n = 2) | • Health services management (n = 2) • General physician (n = 2) • Psychology (n = 3) • Nursing (n = 1) | • Faculty member (n = 2) • Head of a rehabilitation and training center for autism (n = 4) • Top manager in province primary health center (n = 2) • Top manager in state welfare organization (n = 2) | • Administration of ASD services |
5 | Researcher (n = 4) | • Male (n = 2) • Female (n = 1) | • Cognitive neuroscience (n = 1) • Epidemiology (n = 2) | • Faculty member (n= 3) | • Research on ASD |
Participants’ viewpoints about implementation of ASD screening programs
Viewpoints of the participants about ASD screening program are categorized in two main themes included screening children with early signs of ASD and screening all children in a specific age range (see Table
4).
Table 4
Participants’ viewpoints about implementation of ASD screening programs
1. Screening children with early signs of ASD | • Impose lower cost to health system • Voluntary participation of families | • “...Furthermore, passive screening method (Screening the children who have revealed early signs of ASD) has lower cost than active ones (the universal screening). I think, there is no need to screen everyone, therefor, this method of screening (the universal screening) imposes less cost to health system. However, there is a vital need to inform public on signs/symptoms of the disorder.” (Psychiatrist) • “Although we expect to achieve more accurate results while screening based on parents’ concerns compared to the universal screening, in some cases parental over-concern creates bias in diagnosis process.” (Psychiatrist) |
2. Screening all children in a specific age range | • Highlighting the importance of providing ASD services in public sector • As a right for every child • Require necessary infrastructure | • “Current services for children with ASD, particularly in public sector, are not adequate. One reason is that the policy makers do not consider providing these services as a priority. We know the prevalence of this disorder is high among children. It is necessary to understand that children are our country’s future human capital. The universal screening would highlight the importance of providing ASD services in public sector.” (Pediatrist) • “Having access to the universal screening is a right for every child. If I knew that my daughter’s specific behavior was due to her especial condition (ASD), I would have understood her condition earlier, and I would have tried to find a better way to communicate with her.” (Parent 5) • “If the aim of the implementation of ASD screening is solely providing statistics, then the screening would provide some vague results. It would not have a lot of benefits. The greater attention to statistics in recent years has led to an over-diagnosis of autism, while we faced under-diagnosis about 4 to 5 years ago.” (Pediatrist) |
Theme 1: screening children with early signs of ASD
This theme summarizes the pros and cons of screening children with early signs of ASD. In such screening program, parents’ concern regarding their child’s health status is a base for implementing ASD screening.
Sub-theme 1–1: impose lower cost to health system
Professionals declared that screening children after observing the signs of ASD has lower operation costs than the universal screening program.
Sub-theme 1–2: voluntary participation of families
Psychiatrists had different viewpoints on accuracy of parents’ responses in screening children with early signs of ASD. Some psychiatrists believed that greater accuracy of responses is an advantage of screening children based on early signs of ASD compared to the universal screening program, because of the voluntary participation in the program and high motivation of participants.
“When we do screening based on parents’ concern about their child’s abnormal behavior, we achieve more valid responses. (Psychiatrist).
In contrast, some other psychiatrists believed that such screening method may create some biases in the results due to over-report or under-report of symptoms expressed by the parents of children with abnormal behaviors.
Theme 2: screening all children in a specific age range
This theme explains advantages and disadvantages of the universal screening, in which all children in a certain age are screened for ASD.
Sub-theme 2–1: highlighting the importance of providing ASD services in public sector
All types of participants both parents and professionals believed that universal screening has some benefits for children with ASD. For instance, universal screening would contribute to determine the prevalence of ASD in the community and it would encourage policy makers to provide necessary treatment for children with ASD.
Sub-theme 2–2: as a right for every child
All the parents emphasized that the universal screening program should be implemented during the routine child-health visits in PHC centers. They believed that the early diagnosis of the disorder would provide a good opportunity for them to seek the best available treatment in the early stages of the disorder.
“I was seeing my child having difficulties in doing some activities and unusual repetitive habits at the early age, but I didn’t know what it meant precisely! If the healthcare provider had informed me of my child’s disorder in child-care visits, my son’s health status could have been better by now.” (Parent 7).
All the parents believed that the implementation of a universal screening program is inevitable despite these children’s other issues like access to health services, quality of services, and effectiveness of services.
“Having access to the universal screening is a right for every child. If I knew that my daughter’s specific behavior was due to her especial condition (ASD), I would have understood her condition earlier, and I would have tried to find a better way to communicate with her.” (Parent 5).
Sub-theme 2–3: require necessary infrastructure
Although most participants from health system had positive opinion regarding the screening per se, they did not agree to implement universal screening program due to shortages of financial and human resources for providing appropriate rehabilitation services for children with ASD. Every participant had different rationale why it is not an appropriate time to implement the universal screening program. However, there was a consensus among the participants about the implementation of screening when parents reach out them with any concern about their children’s abnormal behaviors.
“In my opinion, screening should be conducted based on parents’ concerns regarding their children’s condition. I don’t agree with the universal screening in current circumstances.” (Therapist).
Moreover, most of the participants from health system agreed that the implementation of the universal screening program by itself does not create any value. In fact, the universal screening program is valuable if it is conducted following by early treatment and rehabilitation services.
Challenges in implementation of the universal screening program
Entirely, four main themes including: shortcomings of screening tools, weakness of the health system, lack of coordination among ASD service providers, and social and ethical issues, sub-grouped to 11 sub-themes, were extracted to point out the challenges of the implementation of the universal screening program in Iran (see Table
5).
Table 5
Challenges in implementation of the universal screening program in Iran
3. Shortcomings of screening tools | • Lack of reliable screening tool • Judgmental bias and lack of valid diagnostic assessment | • “I always use M-CHAT but I don’t get correct results. There is an essential need for cultural adaptation of screening tools (for ASD) in our region.” (Psychiatrist) • “Autism screening is very similar to using ASQ for developmental screening. ASQ is the same. For example, when we use ASQ for 1-year-old children, we expect to find 10–12% failed results, but our failures are much less than expected rate! It is approximately 1%!” (Psychiatrist) |
4. Weakness of the health system | • Shortages of healthcare providers in the field of ASD • Lack of standard treatment protocols • Deficiencies in qualified screeners for ASD | • “We definitely cannot say that the improvement of a child’s health condition is related to the services provided for him/her, or is related to the cycle of disease itself. A population-based screening program (universal screening program) could not be the best option while these issues remain unaddressed.” (Pediatrist) • “Currently, there are very few therapists who are following the standards of treatment. First, we need to make sure that healthcare providers follow treatment standards, and then we can think about the implementation of screening.” (Psychiatrist) • “Screening is a main focus of the district health centers, and we have no qualified staff in our health centers.” (Administrator) |
5. Lack of coordination among service providers | • Lack of integrated system for ASD • Problem of referrals | • “...Many children come to my clinic with several unnecessary medical test results including MRI, metabolic tests, and so on.” (Pediatrist) • “The referral system of autism is not performing well. For example, I referred a child with autism to his hometown, nevertheless, after some time, I realized that no service had been provided for him, and nobody had followed the referred child. These problems would be intensified after the implementation of the universal screening program.” (Psychiatrist) |
6. Social and ethical issues | • People’s negative attitudes towards the autism • Unawareness of community about ASD • Uncertainty about the competence of autism centers • Lack of strong rational to implement the universal screening program | • “In one case, after discussing with me (as a psychiatrist), the Behvarz contacted the father of the child and told him about probability of his son’s autism disorder. The father became so angry and used offensive language against the Behvarz. Because the father was thinking his son was healthy and she (Behvarz) was labelling his son wrongly! In my opinion, the universal screening program should not be implemented till the adequate awareness and information being provided in the society about autism.” (Psychiatrist) • “Most people do not want to accept their child’s illness. It is very difficult to convince a parent to admit that his/her child has autism. For instance, I know a man whose son has autism too. When I started to talk about our children’s condition as a same problem, he slipped away. He said that my son doesn’t have autism, he is only a few hyperactive!” (Parent 6) • Most of the autism rehabilitation centers are private organizations or are affiliated to state welfare organization. We don’t know how these centers perform well in provision of services to children with ASD! (Administrator) • “The diagnosis of the disorder by itself cannot encourage families to seek an appropriate treatment. Currently, only few numbers of children with ASD have access to appropriate health care. How many of the families can afford their children’s treatment?! Screening is not ethical without having therapeutic and educational interventions for children who would be diagnosed with ASD.” (Therapist) |
Theme 3: shortcomings of screening tools
This theme highlights the problems regarding the screening tools in Iran. ASD screening tools are instruments designed to help identify children with ASD. Screening tools could be specified for being used in medical centers, schools, or in other settings. Screening tools do not conclusively result in diagnosis, and a follow-up assessment should be conducted in each positive screening result.
Sub-theme 3–1: lack of reliable screening tools
Most of the participants, especially psychiatrists and therapists, agreed that the commonly used screening tools (M-CHAT and Q-CHAT) do not satisfy users in Iran. Participants with higher experience in ASD diagnosis declared that they use M-CHAT, however, they cannot reach accurate results in most of the cases.
“Commonly used screening tools are not adapted in Azeri or other local languages (in Iran). This makes it difficult to use them appropriately with accurate results.” (Researcher).
Sub-theme 3–2: judgmental bias and lack of valid diagnostic assessment
Psychiatrists and therapists declared that screening and diagnosis process differs from one health provider to another; because, they use different screening tools. Even when two clinicians use the same tool (M-Chat for instance), they usually obtain different results for the same case. On the other hand, the result of screening procedure entirely depends on screener and parent’s subjective judgment. Therefore, reliable results are not obtained in most cases.
“Screening should be done by very precise criteria; however, case (child with ASD) detection depends extremely on individual judgments.” (Therapist).
Another important challenge in screening is related to the large number of false-positive and false-negative results. Because of the judgmental nature of ASD diagnosis, the rate of false-positive and false-negative results are high. This issue highlights the importance of diagnostic assessment and tools, which interrupts the connection between screening and treatment consequently.
“… We need to conduct more researches in terms of the development of a reliable diagnostic tool.” (Psychiatrist).
Theme 4: weakness of the health system
This theme refers to the concerns about therapeutic system as one of the most important challenges in ASD screening program. This theme demonstrates that health system is not ready to provide effective and appropriate services for children with ASD.
Sub-theme 4–1: shortages of healthcare providers in the field of ASD
Participants from health system were critical regarding the large volume of patients in autism centers. ASD services, especially speech and occupational therapy, are pretty time consuming. Obviously, the autism centers do not have enough human resources to provide services for all children with ASD.
“The number of therapists who provide rehabilitation and treatment services for children with ASD are limited. We currently suffer from limited resources, both financial and human resources. If the universal screening program is implemented more children with ASD is detected, therefore, such problems are exacerbated.” (Psychiatrist).
All specialists with experience in the treatment of children with ASD had consensus that one major problem in providing services for these children is shortcomings of skills and knowledge among healthcare providers. Currently, most healthcare providers are beginners and treatment of children with ASD is their first work experience. Additionally, there is no specific course about ASD in their university education period.
Sub-theme 4–2: lack of standard treatment protocols
All participants from health system argued that one of the most important problems in provision of ASD services is related to lack of standard treatment protocols. They emphasized that implementation of universal screening program requires having the standard protocols to diagnose, treat, educate, and empower the children with ASD.
Sub-theme 4–3: deficiencies in qualified screeners for ASD
This theme indicates the concerns about the screeners’ low capability as one of the main challenges in the process of the universal screening program, particularly in rural areas. Screening programs require the screeners to have formal training about screening tools, content of questions, and the way questions should be asked. In Iran, primary health system is responsible for planning and conducting screening programs. In rural areas, Behvarzes (rural health-workers), who have a low-level of educations- mostly elementary degree, should conduct the screening, and this is an issue raised by the professionals regarding the capability of Behvarzes to implement the screening accurately.
“… Screening is a specialized procedure, and it needs special skills. Behvarzes with low-level of education would not be able to perform it correctly, even after passing the special training courses!” (Therapist).
Most of the participants from health system argued that community health workers either in rural or urban areas are not qualified to implement the screening. In fact, they believed that Behvarzes and other community health workers not only do not have an experience of treating or dealing with children with ASD, but also, they have not taken theoretical and practical courses in the fields of ASD.
Theme 5: lack of coordination among service providers
This theme remarks the concerns of the professionals regarding the problems in stratification of services as a challenge in ASD screening program. Currently, the stratification of services is not clear in terms of ASD services in public health system in Iran.
Sub-theme 5–1: lack of integrated system for ASD
Professionals declared that provision of services for children with ASD is completely vague in Iran’s health system. Such services are not provided in primary health system, and because of the specific and unknown characteristics of ASD, most of the parents do not know where to seek the diagnosis or treatment services for their children with abnormal behavior.
‘Some of our colleagues say that they magically treat autism! Because of that, some families from rural areas, where their home, relatives and source of income are located, come to Tabriz (the capital of East-Azerbaijan province) to receive those miraculous treatments. However, wasting a lot of time, they do not see any significant improvement (in their child’s condition) after receiving the services. Therefore, these families realize that they have lost everything! If there was a stratification of services, this would have not been happened for such families.” (Psychiatrist).
Sub-theme 5–2: problem of referrals
Furthermore, professionals believed that referral system is not efficient for ASD. Referrals are carried out without any specific criteria, getting routine feedback, and proper control by a superior.
Theme 6: social and ethical issues
This theme describes the challenges regarding the community’s attitudes towards autism and ethical issues that should be taken into consideration before the implementation of the universal screening program.
Sub-theme 6–1: People’s negative attitudes towards the autism
One of the most important issues highlighted by the participants from health system is related to cultural environment. They thought that people in Iran do not have enough information about the autism; therefore, their reaction is unpredictable after hearing about their child’s condition.
Sub-theme 6–2: unawareness of community about ASD
Parents of children with ASD expressed that most parents do not know anything about autism. They do not want to accept that their child has ASD; instead, they prefer to believe that their child is relatively hyperactive.
“When my child was diagnosed with autism, I had not heard anything about autism. I had no idea about that. As a result, I did not start looking for any appropriate treatment at the beginning stages of the disorder.” (Parent 11).
Sub-theme 6–3: uncertainty about the competence of autism centers
Autism services are mainly provided by private sector and rehabilitation centers affiliated to state welfare organization; however, health system has no authority to evaluate the competence of these centers. According to professionals, implementation of the universal screening will be unethical if the issues related to competence of centers are not approved.
“There is an ethical issue. We assume that the universal screening program is easy to implement. We think that the process of screening starts by diagnosing the disorder and continues well by referring a child with ASD to an autism center. But we do not know the answer of some serious questions; for example, are these autism centers able to meet the children’ needs? And, can we measure the competency of these centers?” (Psychiatrist).
Sub-theme 6–4: lack of strong rational to implement the universal screening program
All the participants from health system agreed that the implementation of the universal screening is not ethically correct without having a plan for providing accessible and effective treatment for any child would be diagnosed with ASD, and a reliable and valid screening tool.
“.. Implementation of the universal screening program for only providing some numbers (statistics) is unethical!” (Pediatrist).
Participants’ recommendations to overcome the challenges
After synthesizing the data, three themes and seven sub-themes were extracted explaining the participants’ recommendations for better implementation of ASD screening and overcoming the aforementioned challenges. Main themes include development of supportive programs, improvement of ASD services, to provide better coordination between policy making, resource allocation, and service provision. (see Table
6).
Table 6
Participants’ recommendations to overcome the challenges
7. Development of supportive Programs | • Raising community awareness • Empowering the parents of children with ASD • Development of support groups | • “Television interview with parents of children with ASD could be an effective way to increase the awareness of people.” (Parent 8) • “Parents of children with ASD are the most important part of the care. They should be completely aware about their child’s condition, treatment process, and consequences of the interventions. The parents would have active roles in their child’s treatment process; therefore, a great amount of attention needs to be paid to parent empowerment programs.” (Therapist) • “We have a critical role in implementation of the universal screening. We can share our own experience with parents of children who have newly been diagnosed with ASD.” (Parent 1) |
8. Improvement of ASD services | • To develop setting/culture-based educational package • To provide special training for professionals in the field of ASD | • “To progress in the screening, we should indicate which child needs which treatment package.” (Psychiatrist) • “Before implementation of the screening program, primary educations must be provided to screeners both theoretically and practically about the process of the screening, screening tools, and the content of screening questions.” (Psychiatrist) |
9. To provide better coordination between policy making, resource allocation, and service provision. | • Making a close collaboration of stakeholders • To implement applied researches | • “If donors provide funds for vital needs, resource allocation problem could be solved. Therefore, donors, managers, and therapists should work closely with each other.” (Administrator) • “One of our most important challenges in implementation of ASD screening program is the lack of knowledge about population’s attitudes and ideas regarding to autism. Therefore, we need to conduct more qualitative studies to understand their knowledge and attitudes about autism.” (Pediatrist) |
Theme 7: development of supportive programs
This theme illustrates that the support programs are needed to help parents of children with ASD to better understand their child’s specific condition and seek the available services (s) as early as possible.
Sub-theme 7–1: raising community awareness
Approximately all participants both parents and professionals had consensus that there should be a unique program to enhance the awareness of people about autism and its consequences, and to introduce new and different ways of diagnosis and treatment. Awareness increasing campaigns could be implemented through mass media, street banners, mobile apps, or in the form of community education programs in PHC centers.
“People’s knowledge about autism is not enough, and in most of the cases, their knowledge is not correct. Awareness regarding autism must be increased before the implementation of the screening program. The government can do this task through television shows, social network apps, banner, and so on.” (Therapist).
Sub-theme 7–2: empowering the parents of children with ASD
All the participants, both professionals and parents, suggested that parents of children with ASD need to be empowered to take care of their children. Therefore, a special program is needed for empowering the parents of newly diagnosed children with ASD.
Sub-theme 7–3: development of support groups
There was an agreement among the parents regarding the development of support groups to help the parents of newly diagnosed children with ASD to adapt themselves with new condition. In such groups, older members would help new ones to manage their life and understand their child’s disorder by sharing their own experiences. Thus, such groups could facilitate the acceptance of the new situation for the parents and would motivate them to search for available services.
“I think parents of children with ASD should form a group and provide advices for the new ones. They may be better in convincing the new diagnosed children’s parents regarding their children’s disorder compared to health care providers.” (Parent 10).
Theme 8: improvement of ASD services
This theme describes the recommendations of the representatives of health system for better implementation of ASD universal screening program. In summary, the better results of the universal screening program will be achieved if desired services are accessible for every newly diagnosed child with ASD.
Sub-theme 8–1: provision of setting/culture-based educational packages
Researchers and psychiatrists believed that preparation of age-adjusted treatment protocols could be useful tools to manage the high volume of patient flows. Such packages should be prepared differently for each severity of spectrum and also, they should be designed separately for the target users such as parents, therapists, etc.
“Before beginning the screening program, we should develop appropriate treatment protocols based on our community’s culture. We can prepare several packages that are specified for health center, school, and home. These packages could reduce the burden for the therapists.” (Researcher).
Sub-theme 8–2: to provide special training for professionals in the field of ASD
Psychiatrists suggested that training courses should be provided for all screeners such as Behvarzes, PHC providers, and therapists before initiating the screening program. Training courses should have both theoretical and practical materials. In addition, trainees should be evaluated at the end of training courses. Those trainees who pass the courses should get license that shows their eligibility and credibility for conducting the screening.
Theme 9: to provide better coordination between policy making, resource allocation, and service provision
This theme shows that how coordination of policy making, resource allocation, and service provision could contribute to overcome challenges in implementation of ASD screening program in Iran.
Sub-theme 9–1: making a close collaboration of stakeholders
According to the participants from health system, many of the challenges will be resolved if close coordination is made among policy makers, donors, service providers, and specialists.
“We need integration among healthcare providers, decision makers, trainers, and donors. If there was an appropriate coordination among all stakeholders, waste of resources would have been reduced.” (Researcher).
According to administrators, if there is an effective collaboration between donors and policy makers in top level of the system, resources will be allocated to the most needed areas.
Sub-theme 9–2: to implement applied researches
Professionals suggested that efficient and effective implementation of the universal screening program requires conducting comprehensive researches to provide an appropriate and valid screening and diagnostic tools, educational packages based on specific needs of school, home, medical center, and other community settings, context-oriented treatment protocols, etc. It seems that it is very difficult to achieve these goals without having a specialized professional autism research center.
“… We need to conduct more researches about the development of a reliable diagnostic tool, context-based treatment protocols, etc. To achieve these goals, it is necessary to have a professional autism research center.” (Psychiatrist).
Additionally, administrators recommended that it would be worthy to implement the universal screening program in a few selected health centers to conduct economic evaluations.
“We should implement the program (the universal screening) in four small health centers in Tabriz to evaluate its cost-effectiveness; because, the health system suffers from limited resources in rural areas, and, implementation of the screening program can’t be accomplished if it is not cost-effective.” (Administrator).
Most of the professionals suggested several qualitative studies to investigate the population’s viewpoints, knowledge, and attitudes about ASD.