Recruitment.

Participants for the study were recruited through recruitment emails distributed to autism intervention service providers and caregiver organizations in mid-to-small-sized cities in mainland China. To be eligible for participation, caregivers had to meet the following criteria: 1) identify as Chinese, 2) serve as the primary caregiver for at least one autistic child under the age of six, and 3) express willingness to engage in two one-hour focus group discussions (i.e., Topic 1, Topic 2). Topic 1 focused on the content participants would like to see in a comprehensive caregiver education program. In contrast, Topic 2 was focused on the delivery method the participants would like for a comprehensive caregiver education program. The age criteria for children were restricted to those under six years old, aligning with the predominant focus of available services in China on early childhood [4] and assisting caregivers in preparing their children for school readiness [21].

Demographic information.

In total, 14 caregivers of autistic children were recruited for the study. Written consent was obtained from all participants, and the research protocol was approved by the Institutional Review Board. Among the participants, 11 identified as mothers, and three identified as fathers of autistic children. The caregivers’ ages ranged from 31 to 50, with 85.7% (n = 12) falling within the 31–40 age group. Table 1 provides characteristics of caregivers and their autistic child(ren).

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Table 1. Characteristics of participants.

https://doi.org/10.1371/journal.pone.0355749.t001

In the Topic 1 focus group discussions, all 14 caregivers actively participated, organized into three groups (i.e., 1A, 1B, 1C) based on their availability for the online meetings. In the Topic 2 focus group discussions conducted two months later, not all original participants were able to commit to the online meeting due to various personal reasons, many of which were childcare and family-care obligations in the context of several severe COVID-19 outbreaks after the early COVID restrictions had been lifted in China. As such, nine out of the original 14 participants were divided into two groups (i.e., 2A, 2B) and joined the Topic 2 focus group discussion. Detailed participation information is provided in Table 1.

Survey.

Before the focus group discussions, participants were asked to complete an online demographic questionnaire and the Family Empowerment Scale [22]. The FES is a 34-item self-report measure used to assess families’ perceived empowerment. It includes nine questions on system advocacy, 11 questions on knowledge, eight questions on competency, and six questions on self-efficacy [22].

Topic guide for focus group.

Following the standard focus group methodology, two distinct topic guides were developed based on different research questions for two focus group discussions.

Topic 1 Focus Group. To guide the discussions of Topic 1, we utilized a topic guide that included basic introductory information on child development, early identification, and diagnostic criteria adapted from Autism Speaks (https://www.autismspeaks.org/) and basic behavioral intervention information adapted from the Registered Behavior Technician (RBT) Task List developed by the Behavior Analyst Certification Board [23]. The introductory information from Autism Speaks on child development, early identification, and diagnostic criteria was selected because it is typically the first information caregivers receive following their child’s autism diagnosis. The RBT Task List was selected because it contains entry-level information for delivering evidence-based behavioral support to autistic individuals. After the topic guide was decided on and written in English, the first author and the second author—trained in special education with a focus on autism and with experience as behavior analysts serving autistic children in China—undertook translations and cultural adaptations to the topic guide. Items that were irrelevant to China (e.g., American Academy of Pediatrics’ Well-Child Care visit) and caregivers (e.g., professional conduct and supervision) were removed, and additional items that caregivers would be interested in based on the first authors’ continuing service experience in China (e.g., naturalistic developmental behavioral interventions) were added. Participants received the topic guide via email a week before the Topic 1 focus group discussions to review. The topic guide is provided as Supporting Information 1 (i.e., S1 File).

Creation of Prototype Video Modules. After Topic 1 focus group discussions were completed, we analyzed the results and created two prototype education videos based on participant feedback. The first video (i.e., Video 1; 6 min 30 s) provided an overview of how behavioral principles impact behavior, introducing applied behavior analysis (ABA) and its dimensions. This video aimed to empower caregivers by helping them understand the foundational concepts of behavior and the importance of analyzing behavior to better understand their children based on the existing and growing popularity of ABA-based services in China [4]. The second video (i.e., Video 2; 9 min 30 s) covered the antecedents and consequences of behavior, serving as an introductory resource for caregivers to grasp the basics of functional behavior assessments. The authors first created video content as a storyboard outline with images and accompanying scripts. Then, both storyboards were produced by a professional video production company, and a combination of lectures by the first author, with presentation slides and videos with animated characters modeling examples, were utilized.

Topic 2 Focus Group. Two months after the conclusion of the Topic 1 focus group, participants were invited to participate in the Topic 2 focus group discussions. Videos 1 and 2 served as topic guides for the Topic 2 focus group discussion and were sent to participants one week before the focus group discussions. The participants were asked to watch the videos before their focus group meeting. Links to videos are available upon request.

Focus group discussion.

Topic 1 Focus Group. Fourteen participants were divided into three groups based on availability and met via online meeting software. Group 1A comprised three participants, Group 1B had six participants, and Group 1C included five. The focus group discussions lasted approximately 60 minutes for each group—all facilitated by the first and second authors. At the beginning of each group meeting, a facilitator outlined the research objective and general rules of group discussions. Participants were then allowed to introduce themselves only by their last name to maintain confidentiality. The facilitators (i.e., the first and second author) screen-shared the topic guide after the introductions. They introduced the items to initiate the discussion regarding the content of proposed caregiver education programs.

Topic 2 Focus Group. Nine out of the original 14 participants were able to join Topic 2 focus group discussions, which were divided into two groups (i.e., four in Group 2A and five in Group 2B). The first author facilitated the Topic 2 focus group discussions, which followed the same format as Topic 1 (i.e., introductions). Participants were encouraged to share their feedback on the two videos and offer suggestions.

Data analysis.

We used reflexive thematic analysis [24,25] to analyze the focus group discussions. This analytical approach was selected to facilitate identifying and exploring recurring themes within the discussion data and offer a nuanced understanding of the caregivers’ perspectives and needs regarding caregiver education for autistic children in the Chinese context. Both focus group discussions (i.e., Topic 1 and 2) were recorded and transcribed using online conferencing software. Two research assistants who are Chinese and fluent in Chinese checked the transcribed transcripts for accuracy. Four authors (MASKED FOR PEER REVIEW) who identify as Chinese and are fluent in Chinese participated in the analysis. The reflexive thematic analysis process in this study involves six phases: (1) Familiarization with the data: each author took individual time to thoroughly read the transcripts and take notes to understand the content and context of the data; (2) Systematic data coding: the authors independently coded the entire transcripts, identifying key ideas of data that might be relevant to address research questions; (3) Generating initial themes: the authors met together to collectively examined, compared, and discussed individual codes to identify connections and group them into candidate themes. This process continued until consensus was reached on the initial themes; (4) Developing and reviewing themes: the authors met again to revisit the initial themes, checking against the coded data to ensure accuracy and alignment. Adjustments to themes, such as splitting, combining, or discarding themes, were made during this stage until the team reached an agreement; (5) Refining, defining, and naming themes: the authors determined the scope and focus of each theme and finalized theme names and definitions through collaborative discussions; (6) Writing the report: themes were synthesized with supporting data extracts integrated to present the findings of this study. All analyses and discussions were conducted in Chinese. The second author translated the transcripts and results into English for dissemination purposes, and the third author conducted accuracy checks for these translations. Positionality statements are provided in as Supporting Information 2 (i.e., S2 File).

Topic 1: What Content Would You Like to See in a Caregiver Education Program?.

Theme 1 – Autism: From Cause to Intervention. From cause to intervention, autism-related knowledge emerged as the participants’ primary thematic focus for a caregiver education program. Many participants expressed confusion upon initially encountering information about autism or upon receiving an autism diagnosis for their children, citing a scarcity of trustworthy resources. Specifically, caregivers shared that distinguishing between autism and other developmental disorders or psychiatric conditions posed a challenge, especially when the next step was to identify appropriate support and service. Furthermore, caregivers expressed that it was particularly challenging to understand the relationship between the characteristics exhibited by their children and the diagnosis of autism, especially in instances where medical professionals were unable to provide a clear and comprehensive explanation of autism and its possible heterogeneity in individual expression.

We first want to know the cause of these children’s symptoms. In other words, maybe the priority is to find out the reason. Figuring out what is affecting the child and what scientific methods are appropriate for intervention. I think this might be a better way for families and parents (P03, 1A).

My child was diagnosed at the age of three, but the diagnosis at first was very unclear. We spent two to three hours on the diagnostic process, filling in measures, etc. The doctor only took 10 minutes to observe my child and said that my child is autistic and needs interventions. I was very confused and skeptical about the diagnosis – how the doctor could only use a few minutes to diagnose my child. After I went back home, I looked up the information about autism, did observations on my child, and finally accepted this diagnosis (P13, 1C).

Incorporating evidence-based practices for autistic individuals within the framework of educational programs was another important component proposed by our participants. Some caregivers recounted their negative experiences with interventions for their autistic children that lacked robust scientific support (e.g., acupuncture). Notably, participants shared that even medical professionals from hospitals sometimes recommended treatments with insufficient empirical evidence. Participants strongly expressed the need for introducing comprehensive information about research-based interventions for autistic children. In addition, participants emphasized the need to empower caregivers with knowledge to discern the veracity of given information, thereby fostering a more informed decision-making process.

Parents who just received their child’s diagnosis do take the wrong path, and I think the first detour comes from the hospital. The interventions the hospital recommended to us, like acupuncture, after doing it, my child showed emotional problems that he/she never had before. Therefore, what I mean is that in addition to those interventions recommended by the hospital, we should also let the parents know more about autism and what other interventions are available; otherwise, they will only trust the hospital since they have no idea about other available interventions (P11, 1C).

Once my child was diagnosed with autism, the doctor said we should look for interventions. While I have learned more about autism, I still get confused every day. Many parents of autistic children take their children to do interventions like electric shock therapy, transcranial magnetic stimulation, and so on. I am skeptical of these methods after I know more about them. Now if anyone recommends my child to receive transcranial magnetic stimulation, I’m sure I’ll scold him. Therefore, it’s essential to have a guide for parents on what works, what doesn’t, what’s harmful, and so on (P14, 1C).

Theme 2 – Behavioral Principles and Techniques. Many participants expressed an interest in acquiring a foundational understanding of behavior principles due to the accumulated evidence of ABA-based interventions with autistic populations and their popularity in China. The prevalence of interventions rooted in ABA was noted among the participants, with some participants sharing positive experiences with ABA-based services. However, despite the increasing popularity of ABA in China, many participants admitted to having limited comprehension of the science behind these interventions. They desired to learn more about the fundamental principles underpinning ABA strategies and their effectiveness.

The science behind ABA, right? I want to know what science it is. I would like to know this because I hear about ABA all the time when my child receives the intervention, but I do not know clearly what ABA is (P03, 1A).

I was resistant to ABA at first. It might not sound good, but I must say that ABA methods, such as discrete trial training, which we used in class, made me feel like we were training animals. Indeed, many parents think this way: I give the instructions, the child gets a reinforcer from me after completing the tasks, and then I pause for a while and start the next round (P04, 1B).

Furthermore, participants articulated a specific interest in acquiring knowledge concerning various behavioral techniques and their application within home and community settings. Many participants shared that they actively provide supplementary learning sessions for their children after they come home from different service providers. However, participants also shared that they frequently encounter challenges navigating the intricacies of specific behavioral intervention techniques. Participants needed a comprehensive understanding of behavioral intervention procedures such as reinforcement, generalization, defining a target behavior, and practical guidance on effectively applying behavioral strategies in real-world caregiving scenarios.

I felt I understood the concepts but did not know how to use them practically. Like the generalization, I think it is hard, and I am unsure if I can help my child generalize one skill to daily living…. I am confused about to which degree the training goal was reached; I remember it was 80% accuracy, and then we could say that the target had been reached. However, there is still a difference when applying those skills to daily life (P09, 1B).

Theme 3 – Caregiver Mental Health Support. Besides the desire to learn to support their autistic children, participating caregivers expressed support needs for themselves, specifically mental health support. Participants shared their experiences of grappling with cumulative anxiety stemming from the diagnosis of autism and the slow developmental progress of their children, even with interventions, exacerbated by expectations that proved to be unrealistic for their unique circumstances. The identified need for mental health support encompassed elements such as guiding new caregivers in accepting the diagnosis, assisting caregivers in establishing realistic expectations for their children, providing strategies for self-care, and fostering connections with other caregivers. Participants emphasized that mental health support for caregivers is pivotal not only for the well-being of the caregivers themselves but also for a healthy family relationship and fostering the positive development of their autistic children.

As a parent who has gone through this, I feel that you need to add something about how to relieve the anxiety of parents. Although I am at a different stage now, if the child has not been progressing, the anxiety of parents is a lot. Our children will be different from others, which makes us more anxious. If the child is continuously making progress, this anxiety will be offset. However, even typically developing children will encounter obstacles to learning. Whenever our children have difficulties learning, parents of these children, including the parents around me, will be generally anxious and even have anxiety bursts. In most situations, such anxiety will affect the child. So, if you are going to teach parents, my suggestion is to add a module about helping parents relieve anxiety as well as stop self-blame. Until now, I still have the thought sometimes that I brought my child into the world but did not give him a complete and healthy body (P01, 1A).

Topic 2: What Presentation Method Would You Prefer?.

Notably, during the Topic 1 focus group discussions, participants shared comments related to Topic 2 specifically regarding presentation modality and method in caregiver education programs without prompting. For example, one participant expressed the need to be able to understand the content within their own timeframe and another emphasized the use of diverse examples. We synthesized these comments into aligned themes that emerged from the Topic 2 discussions.

Theme 1—Accessible Language and Cognitive Load. Participants highlighted the significance of language accessibility, sharing the difficulties they experienced trying to understand medical terms exacerbated by limited Chinese resources. They emphasized the need for content to be presented in a clear and comprehensible manner. Participants also expressed difficulties in comprehending information that came from English sources, acronyms that were directly used from their original English forms (e.g., ABA, DTT), and overwhelming technical terminology and jargon.

When I read books or listen to lectures, some terms are difficult to understand. I need to spend more time processing them and making them more direct. I am unsure whether other parents would have the same feeling (P04, 1B).

The cognitive load associated with educational programs emerged as another focal point concerning the delivery method. One aspect was linked to the duration of programs, with caregivers expressing a preference for structured programs that effectively accommodate their schedules and individualized needs. Several participants recommended avoiding presentations exceeding ten minutes, citing considerations such as childcare responsibilities and the potential for overwhelming cognitive load. However, some participants said it would be acceptable to watch longer videos if the topic was complicated and took more time to explain. Another subtheme regarding considerations for cognitive load among participants pertained to the variation of difficulty in different contents. Participants suggested catering to the individual needs of caregivers at various stages of supporting their autistic children. This included addressing the needs of new parents whose children have recently received a diagnosis and those who already possess basic knowledge of autism. This sub-theme underscores the importance of ensuring that online education programs are not only linguistically accessible and temporally feasible but also allow for self-selection and curation.

For the duration of videos, I feel just like the videos we watched on TikTok, which takes six or seven minutes for each one, so it should not be more than ten minutes. In this way, the length of time would be better (P04, 2A).

If online education targets parents, can you divide the content into three levels based on the parents’ stage—novice, intermediate, and advanced? This way, parents can make corresponding choices based on their needs (P05, 2B).

Theme 2 – Case Examples and Modeling. Participants articulated a pressing need to bridge the gap between theoretical understanding and practical implementation in real-life settings, particularly concerning their autistic children’s unique needs. Consequently, participants underscored the value of incorporating case examples spanning various ‘severities’ of autism, as the case examples can serve as instructive illustrations for caregivers on how to tailor and adapt interventions to suit the individualized requirements of their children. Moreover, participants highlighted the efficacy of modeling as a recommended approach to facilitate comprehension and acquisition of intervention techniques and their application within everyday caregiving contexts.

Can we analyze the case examples more specifically and see if the target behaviors can be categorized? Because each child has different characteristics, they might present different problems (P02, 1A).

As a new parent like me, everything is good when my child is in the intervention center with teachers, but I really cannot cope with my children’s needs at home. Part of the reason is my limited ability, so if there is a video, parents can just learn to follow the modeling to teach kids (P03, 2A).