WHO Program “Skills Training for Caregivers of Children with ASD”Abstract
The WHO 'Skills Training for Caregivers of Children with ASD' program provides an alternative to the lack of treatments for children with neurodevelopmental disorders. Targeted at caregivers, it utilizes community resources and is implemented by non-specialist professionals guided by Master Trainers. This study evaluated the Brazilian program's pre-pilot phase conducted by Master Trainers. The research employed qualitative methods and data collection through two focus groups, analyzed using Descending Hierarchical Classification (IraMuTeQ®️ software). Five categories emerged from the content of the parent group (n=7) and five from professionals (n=4). Findings indicate the program's feasibility, acceptability, and relevance, with positive impacts on caregivers (behavior management, self-care, support network creation) and their children (social interaction, communication, behavior).
Keywords:
autism; autistic children; pervasive developmental disorders; caregivers; parent training
Resumo
O programa “Treinamento para Cuidadores de Crianças com TEA” (OMS) é alternativa para a carência de tratamentos para crianças com transtornos do neurodesenvolvimento. Direcionado para cuidadores, aproveitamento dos recursos da comunidade, executado por profissionais não especialistas, orientados por Master Trainers. Este estudo avaliou o pré-piloto da implementação brasileira do programa, aplicado por Master Trainers. Pesquisa com método qualitativo e coleta de dados com dois grupos focais, analisados pela classificação hierárquica descendente (software IraMuTeQ®️). Resultaram cinco categorias do conteúdo do grupo de pais (n=7) e cinco de profissionais (n=4). Os resultados indicam viabilidade, aceitabilidade e relevância do programa, além de impactos positivos nos cuidadores (manejo comportamental, autocuidado, criação de rede de apoio) e em seus filhos (interação social, comunicação, comportamento).
Palavras-Chave:
autismo; crianças autistas; distúrbios globais do desenvolvimento; cuidadores; treinamento de pais
The prevalence of Neurodevelopmental Disorders (NT), especially Autism Spectrum Disorder (ASD), has increased considerably in recent decades (Baird et al., 2006). Due to their significant influence on child development and the quality of life of family members, they represent a major public health challenge (Seltzer et al., 2010). Although ASD is a chronic condition for which there is no cure, there is treatment. Early and intensive intervention, in the first years of life, when the most important changes and evolutionary jumps in the cognitive, motor, social, and language areas are processed, is recommended among specialists (Victorine & Mijna, 2006). Studies indicate that protective environmental factors can modify and reduce biological risk factors, overcoming some difficulties in the first years of life, as long as there is adequate intervention, and that children are stimulated by the environment early (Valiati, 2014;Dawson et al.,Santini et al., 2024).
However, intensive treatments offered by specialists are expensive, and there is a treatment gap for children with this condition[v] in middle and low-income countries (Kieling et al, 2011). In the Brazilian context, the socioeconomic reality of the majority of the population is incompatible with the treatment indication for ASD (Mello et al, 2013). Alternatively, current literature indicates that caregivers can learn techniques to promote skill development in children with suspected NT, and there is evidence that children benefit greatly from these interventions (McConachie, 2007). Therefore, parent training is a viable and effective alternative (Tekola et al., 2020) in low-resource environments.
Taking into account the epidemiological data, which point to the increasing prevalence of the diagnosis of NT, especially ASD, the scarcity of available interventions and professionals in middle and low-income countries, as well as the therapeutic potential of parent-mediated interventions, the World Health Organization's Mental Health Coordination, in partnership with the Autism Speaks Foundation, developed a precursor program. This program, Caregivers Skills Training (CST), is based on scientific evidence, findings from systematic reviews and meta-analysis of the literature (Hamdani et al., 2017). CST is intended for caregivers of children aged 2 to 9 in developing countries. Furthermore, it aims at sustainability, taking advantage of locally available resources and services. Ideally, CST should be part of a cohesive network of care services available to families of children with delays or ND. It was designed so that non-specialist professionals, present in basic health networks, can be guided to deliver the program to caregivers.
The training aims, first of all, to assist parents in stimulating skills, reducing disruptive behaviors, and improving the child's quality of life. The CST also aims to promote a better understanding and acceptance of AD and NT, the strengthening of the necessary accommodations for the child, and the psychological well-being of family members. In addition, the program aims to promote stigma reduction against people with developmental disorders, resulting in greater social inclusion.
The CST is a manualized program, taught by a pair of facilitators, primary care professionals without specialization (such as nurses, technicians, social workers) who receive training and supervision from Master Trainers. The Master Trainers are specialized professionals in developmental disorders, qualified and certified by WHO; they are at the top of the pyramid and are responsible for transferring technical knowledge to facilitators in a cascade learning model.
The training consists of nine weekly group meetings, with an approximate duration of 180 minutes, with 30-minute intervals. The facilitators also conducted three home visits for each family, at the same residence, with individualized instructions, lasting approximately 60 minutes. Visits take place before the first session, in the week of the fourth, and after the last group session. This methodology is being implemented in more than 30 countries, and this study is part of the program's validation and adaptation to the Brazilian socio-cultural context. This phase of the research, pre-pilot, aims to evaluate the feasibility and acceptability of the program in Brazil.
The pre-pilot evaluates the first application of the program in the country, in which the Master Trainers gave the training. However, after the implantation, the facilitators are responsible for delivering the training, which should ideally take place in a community environment. Both the format of the first training cycle and the research followed the design proposed by WHO.
Method
This is an observational, descriptive study, with a qualitative and quantitative method, with prospective data collection. This study is part of the validation process of the WHO CST program and consists of a qualitative analysis of the first training cycle carried out in Brazil. The pre-pilot program was carried out in a city in the southern region of Brazil.
Participants
The study sample is made up of patients referred to a public health service specialized in caring for children and adolescents aged 0 to 17 with suspected or confirmed ASD. At the time of subject selection, the target population (people on the waiting list for multidisciplinary care) consisted of 190 children.
Non-probabilistic convenience sampling was applied to select participants, whose caregivers met the following inclusion criteria: a) be a caregiver of a child aged 2 to 9 years old with a suspected diagnosis of NT, referred to specialized outpatient care in psychology, speech therapy, or occupational therapy treatment; b) be able to attend group sessions and receive home visits; c) agree to participate in group training; d) reside in Curitiba; e) signing the Free and Informed Consent Form; f) participate in at least 75% of the training, including group sessions and home visits. The exclusion criteria for caregivers were: a) the child was undergoing multidisciplinary treatment at the time of inclusion in the study; b) had genetic syndromes and/or multiple disabilities (sensory and motor); c) did not provide sufficient information for analysis of the research; d) withdrew consent.
Among the 190 children waiting for assistance at the mentioned clinic, 38 families were contacted by telephone by the Master Trainers, in chronological order of referral. Among these, 10 families were interested in participating in group training and were able to attend the training according to the schedule proposed by the professionals.
The sociodemographic characteristics of the 10 families who started the training are shown in Table 1. Families 1, 4, and 8 dropped out of the training. 70% of the families completed the program, with an average attendance rate of 86.9%.
The 4 Master Trainers who participated in the study were specialized professionals, trained and certified by the WHO in Brazil. Two Master Trainers were responsible for coordinating the groups, while the other two were observers.
Instruments
The focus groups followed the two guides made available by the WHO, which present guidelines for conducting them: one aimed at professionals and the other at caregivers. The professionals' guide consists of questions that aim to investigate the Master Trainers' perceptions about the experience of guiding home visits and group sessions, as well as the main facilitators and barriers related to the application of the program. The caregivers' guide presents questions about the parents' experience in the program, including the process of learning and involvement in the strategies presented, suggestions about improvements and adaptations of the intervention, material used, and acceptability of the program's content and strategies.
Procedures
The training takes place in 9 (nine) weekly group meetings, with an approximate duration of 180 minutes, with 30-minute intervals. The meetings take place in the specialized outpatient clinic and are led by Master Trainers, trained and qualified by the WHO. The professionals also carried out 3 (three) home visits to each family, in their residence, lasting approximately 60 minutes, providing individual guidance. Both home visits and group sessions were accompanied by a member of the research team. The focus groups lasted approximately 60 minutes and were held in the outpatient clinic after completion of the training.
Data collection
Data collection followed the WHO implementation schedule. The data comprise qualitative measures obtained through two focus groups (FG), one with caregivers who completed training (n = 7) and the other with Master Trainers (n = 4), carried out after the last training session and led by the researchers. The GF is considered one of the most efficient instruments in identifying and translating the participants' perception on a subject, as it offers interaction through dialogue, sharing of mutual experiences and awareness (Nóbrega et al., 2016). Before the start of both groups, general operating rules for this methodology were presented, such as presentation, presence, and purpose of recording equipment, general objective of the discussion, guidelines such as the importance of everyone speaking, speaking one at a time, the possibility of moderator interruptions, in order to guarantee the approach to each subject, reliability, and confidentiality.
Data analysis
The analysis of qualitative data was performed using the audio recordings of the focus groups, which were transcribed to text through the Transcribeme service and subsequently checked for accuracy. The text transcriptions were entered into the French software program IraMuTeQ® (Interface for R for Multidimensional Analysis of Texts and Questionnaires) and analyzed by Descending Hierarchical Classification (CHD).
It is important to highlight that the use of the software is not a method of analyzing data, but a way of processing it; therefore, it does not conclude this analysis, as interpretation is essential and is the responsibility of the researcher (Kami et al., 2016 ).
In this research, the texts are the set of responses from the participants of each FG (Master Trainers and caregivers) to the questions presented by the researcher in the round of conversation. After transcribing the FG, the responses were organized into two files, resulting in two corpora for analysis. In the Master Trainers' GF corpus, three texts were formed, which correspond to the Master Trainers' answers to the set of questions presented. In the caregivers' corpus, five texts were formed for all of the participants' responses.
The organization and analysis of textual data, consisting of the transcription of the focus groups, followed the methodological rigor of thematic categorical analysis proposed by Bardin (2011), which includes three phases: pre-analysis, categorical analysis, and interpretation. The category system was submitted to the researchers for analysis. Based on this procedure, some adjustments were made to achieve a minimum 70% agreement rate among the judges, accordingto Bardin (2011).
Ethical considerations
This research was approved by the Human Research Ethics Committee of the Hospital de Clínicas Complex of the Federal University of Paraná (CAAE n: 02994018.7.3001.0101), as well as by the Ethics Committee of the Health Department of the Curitiba City Hall (opinion number 3.158. 989), in accordance with Resolution No. 466, of December 12, 2012, of the National Health Council.
Results
For the qualitative analysis, the caregivers' FG generated a corpus made up of 5,302 occurrences of words and five texts made up of 150 text segments, of which 106 (70.67%) were considered in the CHD. We identified five themes based on this corpus:
Development of the child's skills (19.8%): a theme in which the participants expressed their perception of the development of the child's skills. They reported how the strategies learned in the CST improved their children's vocabulary, communicative and social skills, and also improved the management of their children's challenging behaviors, as shown in the following excerpt:
When I ignore his behavior, he goes back to his normal behavior and keeps talking. He's even developed his speech more... he's interacting more with the others at school. I'm very happy with this progress... I've come to deal with him better. Before, these things confused me and were enough to make me want to leave the house... he wanted to get my attention all the time. Now that's changed. (C1)
Inclusion and treatment challenges (17.9%): difficulties experienced by mothers, delays in diagnosis, lack of guidance, and lack of access to treatment were mentioned. With regard to schooling, the caregivers also reported that they perceive difficulty on the part of professionals in making the necessary adjustments to the child's needs and in supporting the family. Here is an excerpt on this topic:
I've learned that my daughter doesn't have a label, she has her own way, and everyone has their own way... When G. started nursery school, the principal thought she would only adapt to part-time hours. She has a problem with food. And the principal, from the very first day, looked me in the face and said that, at her school, children don't go part-time. (C2)
(3) understanding (17%): in this class, mothers talk about the change impacted by CST in the way they perceive the difficulties of their children, consequently, in the way of dealing with them, and this understanding helped to reduce the guilt feeling. They also report the difficulty in being understood by family members and close people who did not have access to the knowledge and process of change provided by the training. This is because the participants were able to reevaluate stigmas about the delay in neurodevelopment and ASD, which remain present in the community, as follows:
“The CST, the care they gave us, this important information about preparation and care, made me think differently. As a mother, as an educator, I need to change my mentality, my way of acting”. (C3)
My difficulty is explaining this to people in such a way that they understand the reasoning. It's not a ritual, it's not a formality. Each child has their own particularities, although they don't look like autistic people. People say 'you have to do this', 'you have to do that'. We learn, and I'd like others to do the same because it's working. But for some people, often those close to you, there's a barrier for them to understand the way you're acting. (C4)
(4) Support for caregivers (21.7%): this theme shows that the training offered caregivers assistance and knowledge about NT. It also taught intervention strategies and enabled the development of a support network. This perception of support is illustrated in the following excerpts:
When you arrive at the CST, they tell you that they're going to help you and your child, help you understand how to ignore challenging behaviors, and how to be closer to each other. They teach you step by step, task by task. It helps you to see through the child's eyes. Some things are normal for you, but not for them. This is to help my daughter. No one can do this better than I. For me, it's essential... so that we can help ourselves, as carers, as mothers, to help in difficult times. (C4)
(5) Changes in caregivers' behavior (23.6%): the main focus of this theme is the process of recognition developed during the training. By listening to the stories of other mothers and also during the role-plays, the participants were able to recognize ways of thinking and acting that they didn't perceive in themselves. This recognition triggered personal reflections and transformations, including in self-care, as the following excerpt exemplifies:
“Sometimes we think in a certain way, but we learn a little from each CST participant. We learned a little from each one, so we can try to do the same at home.” (C5)
In the Master Trainers' FG, the corpus was made up of 2,533 occurrences of words, generated from 3 texts made up of 71 text segments, of which 60 (84.51%) were considered in the CHD. Five themes were identified:
Achievements (20%): the advances pointed out by the Master Trainers are related to their own professional growth and improvement - in terms of knowledge, technique, and experience - as well as that of the participants. The professionals felt that the interventions had achieved their objectives and that the caregivers were effectively applying the strategies they had learned, thus promoting the development of the child's skills and improving their well-being. The following excerpts illustrate this theme:
“The CST helped to implement strategies with the children; the families felt more confident, less stressed, and their skills improved.” (M2)
The changes we've seen are incredible... from the first visit to the last, you have no idea what a difference it's made. To organize the space, to organize things, and to empower the families. The caregivers came here discouraged, not knowing what to do. This group helps them have fun and feel empowered. The positive thing is that the caregivers have stopped being victims of their circumstances and have learned to own them, even with all the difficulties involved. None of them knew about these difficulties, but they knew they could walk, and they knew about the network they formed ... in fact, we learned a lot, we learned to be humble and to stop judging and being prejudiced, thinking we know everything.” (M1)
Method (21.7%): This theme brings together excerpts that demonstrate the participants' perception of the effectiveness of the program's method and whether the content is appropriate, sufficient, and accessible. However, it also raises concerns about the way the materials are laid out, as they felt it was difficult to synchronize the organization of the handouts (for facilitators and caregivers) with the presentation of the content in the sessions. Here is a segment that exemplifies this theme:
It was difficult to get used to the material, the way the text material is laid out. What was intended to be done in practice, and what was only intended for us facilitators. It took a while to understand the material and I think we'll have to change that, because the way the material is presented makes it very difficult to learn and pass on... but it was good to see that this methodology works... so I was sure that what we were saying was working, they (caregivers) weren't just agreeing with what we were saying, they were doing it. (M1)
(3) Organization and planning (13.3%): In this theme, the Master Trainers emphasized the importance of planning and mastering the sessions before applying them. They were also concerned with offering well-structured training to facilitators so that they feel prepared to deliver the CST. In addition, the Master Trainers saw the need to better organize the schedule for carrying out the home visits, taking into account the distance between the caregivers' homes and the training venue, as well as the workload the facilitators will have during the training period. Another point raised was the perception that recorded role-playing works better than live role-playing. These excerpts illustrate this theme:
We have to think about the home visits, the logistics, because it takes a lot of time ... to think that people are going to have a workload, in addition to the CST, at the workplace, we have to think carefully about where these people are going to be so that this is possible and accessible, whether it's for the caregivers to go to the CST or for the Master Trainer to make these visits. (M1)
We need to develop a more practical training format when it comes to training new group facilitators, because we ended the week not knowing how to do it; we only had a general understanding. In the recording, you can go back and direct what the caregivers observed. With the live role-play, you lose a lot, so the same video role-play standardizes the information for everyone taking part. Having the video of the role-play ready and recorded makes it easier; you just have to play the video. (M3)
(4) Field activity (21.7%): in this theme, the Master Trainers highlighted home visits and practices carried out in the family context as a central point of the program, due to the fact that these meetings adapt to the particular characteristics of each family, such as their context, the child's level of development and the potential and difficulties of the caregivers. They realize that this factor undoubtedly contributes to setting appropriate goals and choosing suitable teaching strategies. In addition, the visits create a bond between the family (caregiver and child) and the trainer. This closeness and increased trust increased involvement and adherence to the training. Here is a segment that exemplifies this theme:
The home visit was a game changer, because the first day we did it and started the group, we learned more about each child we were talking to, I don't remember the names of the caregivers or the children, but I knew each one, and then, as you talk about the CST and the strategies, you can see each child and adapt that content to each one of them, so I think it's more practical and even easier for you to guide the caregivers. It personalizes the group a bit, generates engagement, and the caregivers value it. (M4)
(5) Supervision (23.3%): This theme demonstrates Master Trainers' awareness of the need for more systematic supervision. It addresses the concerns that Master Trainers have about the type of supervision they will provide to facilitators in the next phases. This aspect was the main difficulty they pointed out in implementing the CST, as shown below:
We could have had more guidance on the steps we should take. We don't know how we're going to supervise the others. We, the four Master Trainers, are sometimes a little lost as to how to direct the group. In the sense of knowing what the next step was, what to expect. We were a bit unsure, but we met a lot. We studied the material together, practiced for many weeks, and learned everything in the material. We have some doubts about when to supervise and how to go about it. (M2)
Figure 1 shows the analysis of the Master Trainers' FG in a word cloud, allowing quick visualization of the content. This type of analysis, carried out in the IRaMuTeQ software, generates a graphical representation according to the frequency of the words, which are presented in different sizes: the larger ones in the center are more frequent and important in the corpus (Camargo, 2013).
Discussion
Treating developmental delays and disorders from an early age can have important impacts on the lives of children and their families. Unfortunately, in low- and middle-income countries, these disorders are still under- or late-diagnosed, and treatments are not very accessible. This means that low-cost training programs, such as CST, have great potential for implementation and dissemination in these contexts, as well as representing possible life changes for this section of the population.
To date, there have been few published studies on CST in other countries, as most of them are still in progress. However, published studies on the application of CST in Ethiopia, Kenya, Chile, Italy, and Hong Kong already demonstrate the great relevance and acceptability of this methodology in different contexts (Tekola et al, 2020; Sengupta et al., 2021; Salomone et al, 2022; Abubakar et al, 2019; Settanni et al., 2024).
In this study, the qualitative analysis showed initial results that were consistent and in line with results from other countries. The qualitative data confirms the Master Trainers' perception that the contents are presented in an intelligible way, which allowed the caregivers to put them into practice (theme 2), and that their participation and involvement increased during the training (theme 1). Data from the caregivers suggests that the group sessions and home visits were well accepted and did not involve socio-cultural barriers. These results were very similar to the pilot implementation in Italy, carried out by Settanni et al. (2024), which recorded that the effect of the intervention was significantly visible through a notable improvement in the caregiver's skills, which subsequently contributed to improved interaction, as well as the ability to deal with phenotypic autism behavior, in addition to better engagement with the child.
The results of this study also demonstrate that the implementation of the CST program in Brazil is feasible. Regarding practical issues such as location, the Brazilian pre-pilot was carried out in a specialized center in the central region of the city, similar to the Ethiopian pre-pilot, which took place in a clinical, hospital setting, rather than in a community setting. Participants' attendance and participation in the training were satisfactory, and the Master Trainers were able to carry out home visits within their workload. However, the Master Trainers (theme 3) raised concerns about feasibility in future phases, since facilitators will have fewer hours fully dedicated to CST, and home visits require time availability. They see the need for prior planning of home visits and believe that the proximity between the training site and the target population's home is an important factor for both families and professionals, which makes it more feasible to use the methodology on a larger scale.In the qualitative interviews of the Ethiopian study, observers also mentioned practical challenges related to home visits (Tekola et al, 2020). In preliminary results from CST trials around the world, feasibility issues in home visits and video recordings (safety, travel, time management), as well as the lack of childcare, are also mentioned as barriers to training (Abubakar et al, 2019).
Some barriers to the feasibility of implementation can be minimized with adjustments that address the practical difficulties presented by families. Offering childcare during the training, adjusting the training schedule, and defining a location closer to the families' homes are examples of actions that can increase participation in the training. Some of these difficulties will probably be minimized when, once validated, the training takes place in community settings, close to the caregivers' homes.
Although the main aim of this study was to assess perceptions of the feasibility and acceptability of CST in the local Brazilian context, rather than the impact of the program on children and their families, there have been significant improvements in the target population. We highlight, for example, the improvement in children's symptoms; the change in caregivers' perceptions; their better management of their children's difficulties; the increase in caregivers' self-confidence; and the creation of a support network among families. On the other hand, we suggest that improvements be made to the role-plays, manuals, and supervision, as well as including secondary caregivers in the training.
Limitations
It should be noted that this study has some limitations. The main limitation is the low number of participants. This research design, defined by the WHO, allows for an exploratory study of the perceptions of caregivers and Master Trainers, but does not allow for statistically significant analysis. In addition, it was found that the level of education of the mothers who took part in the pre-pilot study is higher than the Brazilian national average, and that the Master Trainers are specialists who have knowledge and mastery of the techniques used. Thus, the results presented here possibly do not represent those that will be found in future CST studies, which will take place in community settings in different regions of the country, with a diverse population profile, and will be directed by facilitators.
Conclusion
Our findings showed that both the methods and the content of the CST program are acceptable to the target population and that its application in the Brazilian context is feasible. Despite the preliminary nature of this study and its particular characteristics, the CST parent training model, consisting of group sessions and individualized sessions, seems to have positive results. Parents learn skills to promote their child's development, become more aware of their child's potential and limitations, and are thus more empowered. However, it is still necessary to measure the benefits of this training with a larger number of participants, using standardized instruments, as well as verifying the quality of the training when given by facilitators. Therefore, the continuation of this research, in subsequent phases of implementation, will provide better support for this program to be delivered in the most appropriate way to the Brazilian population. These findings in Brazil may also be relevant to countries with fewer resources and similar socio-cultural characteristics.
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Research data is available on request from the corresponding author.
Note. This figure shows the word cloud of the analysis of the content elements of the Master Trainers Focus Group.