Acessibilidade / Reportar erro

Effectiveness of Distance Educational Programs for parents of children diagnosed with Autism Spectrum Disorder: an integrative review

ABSTRACT

Objective

to analyze the scientific literature on distance education programs for parents/caregivers in the development of children with Autism Spectrum Disorder (ASD).

Research Method

the PICO strategy was used to identify the research problem. The databases Medline, ERIC, LILACs, EMBASE, CINAHL, Web of Science, and Scopus were searched using specific descriptors and free terms. There were no restrictions on time or language. Articles on online educational programs for parents of children with ASD were selected, focusing on the impact of these programs on the development of children up to six years old.

Selection Criteria

studies were selected based on standard eligibility criteria, including full-text reading after initial screening using the RAYYAN software. Primary studies such as clinical trials and systematic reviews evaluating distance education programs for parents of children with ASD were included.

Data Analysis

the RAYYAN software was used for initial study selection. Articles were hierarchically organized based on title and abstract, followed by full-text reading to apply eligibility criteria.

Results

the initial search yielded 1019 articles, of which 192 were identified as duplicates. After initial screening and full-text reading, 37 articles were analyzed, of which six were deemed eligible to answer the research question. Among the eligible studies, one was a systematic review and five were experimental studies. Experimental studies highlighted positive impacts on areas such as daily routines, behavioral flexibility, and communication. The systematic review provided preliminary evidence that distance education programs for parents can enhance knowledge about ASD, increase adherence to interventions, and foster the development of social and communication skills in children.

Conclusion

the findings suggest that remote parent guidance programs may effectively improve knowledge about ASD, increase parent adherence to interventions, and promote the development of social and communication skills in children with ASD.

Keywords:
Autism; Telemedicine; Child Development; Parents; Autism Spectrum Disorder

RESUMO

Objetivo

analisar a produção científica sobre programas educativos à distância para pais/responsáveis no desenvolvimento de crianças com Transtorno do Espectro Autista (TEA).

Estratégia de pesquisa

utilizou-se a estratégia PICO para identificar o problema de pesquisa. Foram consultadas as bases de dados Medline, ERIC, LILACs, EMBASE, CINAHL, Web of Science e Scopus utilizando descritores e termos livres específicos. não houve restrição de tempo ou idioma. Foram selecionados artigos sobre programas educativos online destinados a pais de crianças com TEA, com foco no impacto desses programas no desenvolvimento de crianças de até seis anos.

Critérios de seleção

os estudos foram selecionados com base em critérios de elegibilidade padrões, incluindo a leitura completa dos artigos após a triagem inicial realizada com o software RAYYAN. Foram incluídos estudos primários, como ensaios clínicos e revisões sistemáticas que avaliaram programas educativos à distância para pais de crianças com TEA.

Análise dos dados

utilizou-se o software RAYYAN para a seleção inicial dos estudos. Os artigos foram organizados hierarquicamente com base no título e resumo, seguido pela leitura integral para aplicação dos critérios de elegibilidade.

Resultados

a busca inicial resultou em 1019 artigos, dos quais 192 foram identificados como duplicados. Após a seleção inicial e a leitura completa, 37 artigos foram analisados, dos quais seis foram considerados elegíveis para responder à pergunta de pesquisa. Entre os estudos elegíveis, um era uma revisão sistemática e cinco eram estudos experimentais. Os estudos experimentais destacaram impactos positivos em áreas como rotinas diárias, flexibilidade comportamental e comunicação. A revisão sistemática indicou evidências preliminares de que os programas educativos à distância para pais podem melhorar o conhecimento sobre TEA, aumentar a adesão às intervenções e promover o desenvolvimento de habilidades sociais e de comunicação nas crianças.

Conclusão

os resultados sugerem que programas remotos de orientação para pais podem ser eficazes para melhorar o conhecimento sobre TEA, aumentar a adesão dos pais às intervenções e promover o desenvolvimento de habilidades sociais e de comunicação em crianças com TEA.

Descritores:
Autismo; Telemedicina; Desenvolvimento Infantil; Pais; Transtorno do Espectro Autista

INTRODUCTION

Autism Spectrum Disorder (ASD) is a neurological condition that manifests in childhood and persists throughout life. It is characterized by persistent deficits in social interaction and communication, impairments in socioemotional reciprocity, and restricted and repetitive patterns of behavior, interests, or activities(11 AMERICAN PSYCHIATRIC ASSOCIATION. Manual Diagnóstico e Estatístico de Transtornos Mentais. 5. ed. Porto Alegre: Grupo A; 2014.). ASD is a complex, pervasive, and heterogeneous disorder(22 Tager-Flusberg H, Paul R, Lord C. Language and communication in autism. In: Volkmar FR, Paul R, Klin A, Cohen D, editors. Handbook of autism and pervasive developmental disorders: diagnosis, development, neurobiology, and behavior. Hoboken: John Wiley & Sons, Inc.; 2013. p. 335-64.), affecting multiple areas of development and presenting extremely variable characteristics among affected individuals. This variability is partly due to the wide range of genes and environmental factors(33 Gupta AR, State MW. Autismo: genética. Rev Bras Psiquiatr. 2006;28(Suppl 1):S29-38. http://doi.org/10.1590/S1516-44462006000500005. PMid:16791389.
http://doi.org/10.1590/S1516-44462006000...
) that can contribute to the development of ASD. The complexity of this disorder represents a significant challenge for individuals, families, and healthcare systems.

Given the complex nature of ASD, early, multidisciplinary, and long-term intervention is vital(44 Lampreia C. A perspectiva desenvolvimentista para a intervenção precoce no autismo. Estud Psicol. 2007;24(1):105-14. http://doi.org/10.1590/S0103-166X2007000100012.
http://doi.org/10.1590/S0103-166X2007000...
). Early intervention involves a combination of specialized therapies, including behavioral therapy, speech therapy, occupational therapy, and, in some cases, medication(55 LaFrance DL, Weiss MJ, Kazemi E, Gerenser J, Dobres J. Multidisciplinary Teaming: Enhancing Collaboration through Increased Understanding. Behav Anal Pract. 2019;12(3):709-26. http://doi.org/10.1007/s40617-019-00331-y. PMid:31976281.
http://doi.org/10.1007/s40617-019-00331-...
).

Due to the great heterogeneity among children with ASD, it is necessary to choose interventions that make sense for each individual and adjust treatment expectations, as responses to treatment can vary considerably. According to the CDC(66 Maenner MJ, Warren Z, Williams AR, et al. Prevalência e características do transtorno do espectro do autismo entre crianças de 8 anos: rede de monitoramento de autismo e deficiências de desenvolvimento, 11 locais, Estados Unidos, 2020. MMWR Surveill Summ. 2023;72(2):1-14. http://doi.org/10.15585/mmwr.ss7202a1. PMid:36952288.
http://doi.org/10.15585/mmwr.ss7202a1...
), one in every 36 children aged 8 years old in the United States is diagnosed with autism, representing 2.8% of children population. This high prevalence presents significant challenges for the healthcare network and families, given the shortage of trained professionals and the concentration of referral centers in central regions. In geographically large countries like Brazil, access to treatments and interventions can be particularly challenging in peripheral, inland, and rural areas(77 Soares AN, Silva TL, Franco AAAM, Maia TF. Cuidado em saúde às populações rurais: perspectivas e práticas de agentes comunitários de saúde. Physis. 2020;30(3):e300332. http://doi.org/10.1590/s0103-73312020300332.
http://doi.org/10.1590/s0103-73312020300...
). This highlights the need to create intervention alternatives that are not only effective but also accessible and scalable.

In the field of Speech-Language Pathology, the practice of Tele-Speech-Language Pathology was regulated by RESOLUTION CFFa No. 580, dated August 20, 2020. This includes synchronous and asynchronous practices, as well as teleconsultations, telemonitoring, and providing a basis for distance parental guidance practices using technology.

Early intervention, while beneficial, can be costly for families and the state, making it necessary to create different forms of intervention. Recent studies have shown the effectiveness of using technology to conduct remote interventions(88 Sutherland R, David T, Roberts J. Telessaúde e autismo: uma busca sistemática e revisão da literatura. Int J Speech Lang Pathol. 2018;20(3):324-36. http://doi.org/10.1080/17549507.2018.1465123. PMid:29709201.
http://doi.org/10.1080/17549507.2018.146...
), which can help bridge this gap. However, it is important to note that remote intervention modalities may disproportionately benefit those with higher socioeconomic status, highlighting the need to ensure equity in access to these resources(99 Baharav E, Reiser C. Using telepractice in parent training in early autism. Telemed J E Health. 2010;16(6):727-31. http://doi.org/10.1089/tmj.2010.0029. PMid:20583950.
http://doi.org/10.1089/tmj.2010.0029...
).

Among remote intervention modalities, parent education and training have shown significant gains in the language development of children with ASD. The literature provides evidence(1010 Lampreia C. A perspectiva desenvolvimentista para a intervenção precoce no autismo. Estud Psicol. 2007;24(1):105-14. http://doi.org/10.1590/S0103-166X2007000100012.
http://doi.org/10.1590/S0103-166X2007000...

11 Preece D, Symeou L, Stošić J, Troshanska J, Mavrou K, Theodorou E, et al. Accessing parental perspectives to inform the development of parent training in autism in south-eastern Europe. Eur J Spec Needs Educ. 2016;32(2):252-69. http://doi.org/10.1080/08856257.2016.1223399.
http://doi.org/10.1080/08856257.2016.122...
-1212 Alpert CL, Kaiser AP. Training parents as milieu language teachers. J Early Interv. 1992;16(1):31-52. http://doi.org/10.1177/105381519201600104.
http://doi.org/10.1177/10538151920160010...
) that difficulties or delays in children's communication are associated with changes in parental behavior.

With the constant evolution of technology, online educational programs for parents and caregivers can offer interactive learning modules, support resources, and expert guidance to address specific issues related to ASD(1313 Parsons D, Cordier R, Vaz S, Lee H. Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: systematic review. J Med Internet Res. 2017;19(8):e198. http://doi.org/10.2196/jmir.6651. PMid:28807892.
http://doi.org/10.2196/jmir.6651...
). These programs can range from training on specific behavioral techniques to guidance on navigating education and healthcare systems to ensure the appropriate rights and services for these children. However, the potential benefits of these programs must be weighed against the associated challenges. For example, some families may have difficulty accessing reliable internet or may not be familiar with the required technology to participate in these programs. Additionally, although many online programs are designed to be self-guided, some parents may feel overwhelmed without direct support from a professional(1414 Ingersoll B, Berger N. Parent engagement with a telehealth-based parent-mediated intervention program for children with autism spectrum disorders: predictors of program use and parent outcomes. J Med Internet Res. 2015;17(10):e227. http://doi.org/10.2196/jmir.4913. PMid:26443557.
http://doi.org/10.2196/jmir.4913...
).

Given the diversity of experiences and contexts of individuals with ASD and their families, it is essential that remote educational programs are flexible and customizable to meet the specific needs of each family. Furthermore, research should continue to evaluate the effectiveness of these programs in different populations and contexts to ensure that they are a useful and accessible tool to support the development of children with ASD.

Therefore, it is necessary to understand and synthesize the current state of scientific knowledge regarding the impact and understanding of the effectiveness and applicability of remote educational programs for parents and caregivers of children diagnosed with ASD. Based on the results, we will recommend strategies to improve the implementation of these programs, ensuring they broadly and equitably benefit all families facing the challenges associated with ASD.

METHOD

This study consists of an integrative literature review(1515 Ercole FF, Melo LS, Alcoforado CLGC. Integrative review versus systematic review. Reme: Rev Min Enferm. 2014;18(1):1-260. http://doi.org/10.5935/1415-2762.20140001.
http://doi.org/10.5935/1415-2762.2014000...
), a method that allows the combination of empirical and theoretical studies to search for broader evidence on a specific topic. Due to the inclusive nature of this type of review, it is possible to address a wider range of purposes, such as concept definition, theory review, evidence review, and methodological practice analysis(1616 de Souza MT, da Silva MD, de Carvalho R. Integrative review: what is it? How to do it?. Einstein (São Paulo). 2010;8(1):102-6. http://doi.org/10.1590/S1679-45082010RW1134. PMid: 26761761.
http://doi.org/10.1590/S1679-45082010RW1...
).

Our integrative review followed a structured six-step procedure(1717 Straus SE, Glasziou P, Richardson WS, Haynes RB. Evidence-Based Medicine E-Book: How to Practice and Teach EBM [Internet]. London: Elsevier Health Sciences; 2018 [cited 2022 May 10]. Available from: https://books.google.com.br/books?hl=pt-BR&lr=&id=BkRPDwAAQBAJ&oi=fnd&pg=PP1&dq=Strauss+SE
https://books.google.com.br/books?hl=pt-...
): (1) preparation of the research question; (2) definition of descriptors and keywords; (3) selection of articles according to eligibility criteria; (4) data collection, extraction, reading, and critical analysis of the articles; (5) interpretation and discussion of the results; (6) knowledge synthesis and presentation of the review(1818 Melnyk BM, Fineout-Overholt E, Stillwell SB, Williamson KM. Prática baseada em evidências: passo a passo: os sete passos da prática baseada em evidências. AJN, Am J Nurs. 2010;110(1):51-3. https://doi.org/10.1097/01.NAJ.0000366056.06605.d2.).

To formulate the guiding question, we used the PICO strategy(1717 Straus SE, Glasziou P, Richardson WS, Haynes RB. Evidence-Based Medicine E-Book: How to Practice and Teach EBM [Internet]. London: Elsevier Health Sciences; 2018 [cited 2022 May 10]. Available from: https://books.google.com.br/books?hl=pt-BR&lr=&id=BkRPDwAAQBAJ&oi=fnd&pg=PP1&dq=Strauss+SE
https://books.google.com.br/books?hl=pt-...
,1919 Akobeng AK. Principles of evidence based medicine. Arch Dis Child. 2005;90(8):837-40. http://doi.org/10.1136/adc.2005.071761. PMid:16040884.
http://doi.org/10.1136/adc.2005.071761...
,2020 Flemming K. Critical appraisal. 2. Searchable questions. NT Learn Curve. 1999;3(2):6-7. PMid:10474424.) (Patient, Intervention, Comparison, Outcomes), a useful tool for structuring health research questions. In this case, the first element (P) referred to caregivers or family members of children with autism; the second (I), to distance educational programs for these caregivers; the third element (C) was not used in this review; and the fourth element (O) refers to the skills, language development, and cognitive development of the children.

Thus, the guiding question of this review was: "What are the impacts of distance educational programs for caregivers or family members of children diagnosed with Autism Spectrum Disorders?"

The search for relevant studies was conducted in December 2021 in the databases Medline, ERIC, LILACs, EMBASE, CINAHL, Web of Science, and Scopus. We used a combination of keywords and descriptors selected from Medical Subject Headings (MeSH), Emtree Terms, and Health Sciences Descriptors (DeCS) from the Virtual Health Library (VHL) (Table 1).

Table 1
Search strategy for the databases

The search strategy was developed with the contribution of an information professional with extensive experience in the field. Additionally, the recommendation PRESS - Peer Review of Electronic Search Strategies(2121 McGowan CJ, Pyne DB, Thompson KG, Rattray B. Warm-up strategies for sport and exercise: mechanisms and applications. Sports Med. 2015;45(11):1523-46. http://doi.org/10.1007/s40279-015-0376-x. PMid:26400696.
http://doi.org/10.1007/s40279-015-0376-x...
) was adhered to the search and identification process, ensuring the quality, systematization, and transparency of the search strategy construction process. There was no date restriction, aiming for a comprehensive and historical understanding of the topic.

Inclusion criteria considered online educational programs focused on teaching parents and/or caregivers of children diagnosed with Autism Spectrum Disorder (ASD) under six years old. Exclusion criteria included educational programs used to complement therapies, those addressing direct intervention for children, and studies that did not discuss the impact on children's skills after the intervention. Programs exclusively for skills assessment or diagnosis were also excluded.

After the database search, the software Rayyan(2222 Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan: a web and mobile app for systematic reviews. Syst Rev. 2016;5(1):210. http://doi.org/10.1186/s13643-016-0384-4. PMid:27919275.
http://doi.org/10.1186/s13643-016-0384-4...
) was used to manage the selection of primary studies. For data analysis, duplicates were initially excluded by the software itself. Subsequently, two independent reviewers conducted the analysis, classifying the articles as "included," "maybe," and "excluded."

After the final selection of studies, data extraction was carried out. To ensure consistency and accuracy in this process, a data extraction form was developed, including information on the author, year of publication, country of origin, study objective, study design, target population, intervention (if applicable), main results, and conclusions. This data extraction process was conducted independently by two reviewers. Each filled out the data extraction form for each selected study. After extraction, both reviewers met to discuss and resolve any discrepancies in the extracted information. In cases of disagreement, a third reviewer was consulted to make the final decision. The extracted data were then synthesized and organized to answer the research question. The data extraction process was essential to ensure a complete understanding of the content of each study, enabling comparative analysis and synthesis of all included studies.

RESULTS

The initial search identified 1,192 studies, of which thirty-seven were selected for full-text reading. After applying the eligibility criteria, six studies were included for analysis, as illustrated in Figure 1.

Figure 1
Flowchart of study selection

The selected articles were published between 2017 and 2021, with three articles from the United States(2323 Ibañez LV, Kobak K, Swanson A, Wallace L, Warren Z, Stone WL. Enhancing interactions during daily routines: a randomized controlled trial of a web-based tutorial for parents of young children with ASD. Autism Res. 2018;11(4):667-78. http://doi.org/10.1002/aur.1919. PMid:29316336.
http://doi.org/10.1002/aur.1919...

24 Douglas SN, Kammes R, Nordquist E. Online communication training for parents of children with autism spectrum disorder. Comm Disord Q. 2017;39(3):415-25. http://doi.org/10.1177/1525740117727491.
http://doi.org/10.1177/1525740117727491...
-2525 Kunze MG, Machalicek W, Wei Q, St. Joseph S. Coaching via telehealth: caregiver-mediated interventions for young children on the waitlist for an autism diagnosis using single-case design. J Clin Med. 2021;10(8):1654. http://doi.org/10.3390/jcm10081654. PMid:33924440.
http://doi.org/10.3390/jcm10081654...
), one from Australia(2626 Parsons D, Cordier R, Vaz S, Lee HC. Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: systematic review. J Med Internet Res. 2017;19(8):e198. http://doi.org/10.2196/jmir.6651. PMid:28807892.
http://doi.org/10.2196/jmir.6651...
), one from Iceland(2727 Guðmundsdóttir K, Ala’i-Rosales S, Sigurðardóttir ZG. Extending caregiver training via telecommunication for rural icelandic children with autism. Rural Spec Educ Q. 2018;38(1):26-42. http://doi.org/10.1177/8756870518783522.
http://doi.org/10.1177/8756870518783522...
), and one from Japan(2828 Hong ER, Gong L, Ganz JB, Neely L. Self-paced and video-based learning: parent training and language skills in japanese children with ASD. Except Educ Int. 2018;28(2):1-19. https://doi.org/10.5206/eei.v28i2.7762.
https://doi.org/10.5206/eei.v28i2.7762...
). The results analysis was conducted descriptively, considering the variables of interest for this review. Detailed information on each study is presented in Table 1.

The samples of the studies were heterogeneous, ranging from 3 parents (in a single case study) to 104 parents of children with ASD. In all experimental studies, an online methodology and phased programs were used.

Regarding the data analysis of the experimental studies, it was noted that all were divided into three or four phases, including in-person, online, or mixed methods. In the in-person and synchronous online phases, guidance occurred individually with each family. Additionally, the sequence of phases was very similar, even with different terminologies.

The programs described in the articles demonstrated positive impacts on the development of the children. The eligible articles responded to the guiding question, indicating that distance education for parents is a viable and effective alternative for impacting children's development (Descriptive Chart 1).

Chart 1
Data from the studies included in this review

DISCUSSION

The purpose of this integrative review was to identify and analyze the main results found in published articles on the impact of distance educational programs for parents/caregivers on the development of children diagnosed with ASD. Our analysis demonstrated that parental guidance is a promising intervention model for early intervention in this group of children.

The six articles reviewed in this research(2323 Ibañez LV, Kobak K, Swanson A, Wallace L, Warren Z, Stone WL. Enhancing interactions during daily routines: a randomized controlled trial of a web-based tutorial for parents of young children with ASD. Autism Res. 2018;11(4):667-78. http://doi.org/10.1002/aur.1919. PMid:29316336.
http://doi.org/10.1002/aur.1919...

24 Douglas SN, Kammes R, Nordquist E. Online communication training for parents of children with autism spectrum disorder. Comm Disord Q. 2017;39(3):415-25. http://doi.org/10.1177/1525740117727491.
http://doi.org/10.1177/1525740117727491...

25 Kunze MG, Machalicek W, Wei Q, St. Joseph S. Coaching via telehealth: caregiver-mediated interventions for young children on the waitlist for an autism diagnosis using single-case design. J Clin Med. 2021;10(8):1654. http://doi.org/10.3390/jcm10081654. PMid:33924440.
http://doi.org/10.3390/jcm10081654...

26 Parsons D, Cordier R, Vaz S, Lee HC. Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: systematic review. J Med Internet Res. 2017;19(8):e198. http://doi.org/10.2196/jmir.6651. PMid:28807892.
http://doi.org/10.2196/jmir.6651...

27 Guðmundsdóttir K, Ala’i-Rosales S, Sigurðardóttir ZG. Extending caregiver training via telecommunication for rural icelandic children with autism. Rural Spec Educ Q. 2018;38(1):26-42. http://doi.org/10.1177/8756870518783522.
http://doi.org/10.1177/8756870518783522...
-2828 Hong ER, Gong L, Ganz JB, Neely L. Self-paced and video-based learning: parent training and language skills in japanese children with ASD. Except Educ Int. 2018;28(2):1-19. https://doi.org/10.5206/eei.v28i2.7762.
https://doi.org/10.5206/eei.v28i2.7762...
) corroborate the efficacy of distance intervention, observing significant parental adherence to the intervention program and improvements in children's development.

From the experimental articles, a diversity of methodologies was noted, highlighting the need for future research to determine more systematized practices aiming at ease of replication in clinical practice. Another point that differs among the programs is the delivery mode of the educational program—synchronous or asynchronous. However, most studies (three out of five experimental studies) combined both modalities.

The systematic review(2626 Parsons D, Cordier R, Vaz S, Lee HC. Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: systematic review. J Med Internet Res. 2017;19(8):e198. http://doi.org/10.2196/jmir.6651. PMid:28807892.
http://doi.org/10.2196/jmir.6651...
) found in this article indicates that more interactive delivery methods, with videos and regular contact with the therapist, demonstrate improvements in adherence, increased completion rates, and better adherence to parent-mediated interventions. Hence, the combination of modalities may be more effective, offering more possibilities for the parents' learning process.

The experimental studies commonly featured phased intervention programs, with very similar phase sequences, albeit with different terminologies. Among the study phases, most included a pre-intervention phase, a training phase, and a post-intervention phase.

The training phase, characterized by teaching parents to perform the intervention with the children on the target skills, was the most different among the studies, but most used the asynchronous method (three out of five studies).

The literature discusses that the advantages of asynchronous care include reducing participation impact due to technological issues, such as connectivity observed in synchronous intervention. This service increases access, care quality, and reduces care costs. Additionally, asynchronous intervention presents a possible solution for workforce shortages and a strategy to improve existing care systems(2929 Hjelm NM. Benefits and drawbacks of telemedicine. J Telemed Telecare. 2005;11(2):60-70. http://doi.org/10.1258/1357633053499886. PMid:15829049.
http://doi.org/10.1258/1357633053499886...
).

However, the advantage of the synchronous model is the possibility of providing immediate feedback, suggesting it is more effective in producing behavioral changes(3030 Sarti TD, Almeida APSC. Incorporação de telessaúde na atenção primária à saúde no Brasil e fatores associados. Cad Saude Publica. 2022;38(4):PT252221. https://doi.org/10.1590/0102-311XPT252221.
https://doi.org/10.1590/0102-311XPT25222...
). The synchronous practice in the findings of this review (2525 Kunze MG, Machalicek W, Wei Q, St. Joseph S. Coaching via telehealth: caregiver-mediated interventions for young children on the waitlist for an autism diagnosis using single-case design. J Clin Med. 2021;10(8):1654. http://doi.org/10.3390/jcm10081654. PMid:33924440.
http://doi.org/10.3390/jcm10081654...
,2727 Guðmundsdóttir K, Ala’i-Rosales S, Sigurðardóttir ZG. Extending caregiver training via telecommunication for rural icelandic children with autism. Rural Spec Educ Q. 2018;38(1):26-42. http://doi.org/10.1177/8756870518783522.
http://doi.org/10.1177/8756870518783522...
) was done through online meetings with parents, where the researchers could see them applying the program goals and offer simultaneous feedback.

In studies with asynchronous programs(2323 Ibañez LV, Kobak K, Swanson A, Wallace L, Warren Z, Stone WL. Enhancing interactions during daily routines: a randomized controlled trial of a web-based tutorial for parents of young children with ASD. Autism Res. 2018;11(4):667-78. http://doi.org/10.1002/aur.1919. PMid:29316336.
http://doi.org/10.1002/aur.1919...
,2424 Douglas SN, Kammes R, Nordquist E. Online communication training for parents of children with autism spectrum disorder. Comm Disord Q. 2017;39(3):415-25. http://doi.org/10.1177/1525740117727491.
http://doi.org/10.1177/1525740117727491...
,2828 Hong ER, Gong L, Ganz JB, Neely L. Self-paced and video-based learning: parent training and language skills in japanese children with ASD. Except Educ Int. 2018;28(2):1-19. https://doi.org/10.5206/eei.v28i2.7762.
https://doi.org/10.5206/eei.v28i2.7762...
), constant feedback was provided through an interactive tutorial(2323 Ibañez LV, Kobak K, Swanson A, Wallace L, Warren Z, Stone WL. Enhancing interactions during daily routines: a randomized controlled trial of a web-based tutorial for parents of young children with ASD. Autism Res. 2018;11(4):667-78. http://doi.org/10.1002/aur.1919. PMid:29316336.
http://doi.org/10.1002/aur.1919...
), while in the other two studies(2424 Douglas SN, Kammes R, Nordquist E. Online communication training for parents of children with autism spectrum disorder. Comm Disord Q. 2017;39(3):415-25. http://doi.org/10.1177/1525740117727491.
http://doi.org/10.1177/1525740117727491...
,2828 Hong ER, Gong L, Ganz JB, Neely L. Self-paced and video-based learning: parent training and language skills in japanese children with ASD. Except Educ Int. 2018;28(2):1-19. https://doi.org/10.5206/eei.v28i2.7762.
https://doi.org/10.5206/eei.v28i2.7762...
), parents recorded videos and received feedback on the material.

Therefore, it becomes clearer that combining both methodologies offers more possibilities for the parents' learning process. A study on online parent guidance(3131 Vismara LA, McCormick CE, Wagner AL, Monlux K, Nadhan A, Young GS. Telehealth parent training in the Early Start Denver Model: results from a randomized controlled study. Focus Autism Other Dev Disabl. 2018;33(2):67-79. http://doi.org/10.1177/1088357616651064.
http://doi.org/10.1177/1088357616651064...
) provided evidence that the combination of these settings is an indicator of satisfaction and learning and a factor impacting family involvement.

Another study(2626 Parsons D, Cordier R, Vaz S, Lee HC. Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: systematic review. J Med Internet Res. 2017;19(8):e198. http://doi.org/10.2196/jmir.6651. PMid:28807892.
http://doi.org/10.2196/jmir.6651...
) on telehealth parental programs found that online therapist assistance is a significant predictor of parents' adherence gains in the intervention. A point found in this review (3232 Ingersoll B, Berger N. Parent engagement with a telehealth-based parent-mediated intervention program for children with autism spectrum disorders: predictors of program use and parent outcomes. J Med Internet Res. 2015;17(10):e227. http://doi.org/10.2196/jmir.4913. PMid:26443557.
http://doi.org/10.2196/jmir.4913...
) was the relationship between parents' depressive symptoms and program completion.

Among the experimental studies(2323 Ibañez LV, Kobak K, Swanson A, Wallace L, Warren Z, Stone WL. Enhancing interactions during daily routines: a randomized controlled trial of a web-based tutorial for parents of young children with ASD. Autism Res. 2018;11(4):667-78. http://doi.org/10.1002/aur.1919. PMid:29316336.
http://doi.org/10.1002/aur.1919...

24 Douglas SN, Kammes R, Nordquist E. Online communication training for parents of children with autism spectrum disorder. Comm Disord Q. 2017;39(3):415-25. http://doi.org/10.1177/1525740117727491.
http://doi.org/10.1177/1525740117727491...
-2525 Kunze MG, Machalicek W, Wei Q, St. Joseph S. Coaching via telehealth: caregiver-mediated interventions for young children on the waitlist for an autism diagnosis using single-case design. J Clin Med. 2021;10(8):1654. http://doi.org/10.3390/jcm10081654. PMid:33924440.
http://doi.org/10.3390/jcm10081654...
,2828 Hong ER, Gong L, Ganz JB, Neely L. Self-paced and video-based learning: parent training and language skills in japanese children with ASD. Except Educ Int. 2018;28(2):1-19. https://doi.org/10.5206/eei.v28i2.7762.
https://doi.org/10.5206/eei.v28i2.7762...
) found in this review, only one family did not complete the program. This family was in a mixed modality program and did not complete it due to technology issues. However, most studies in this review mentions as a limitation the lack of prior information about the families and the difficulty in measuring the participation time of families. This highlights the importance of analyzing family's profiles to understand the best intervention approach.

Another point that needs to be analyzed is the sociodemographic situation of the families. Given the high cost of in-person interventions, access to the internet and handling technological equipment can be a challenge for family participation in distance interventions. Several studies(3333 Glasgow RE, Christiansen SM, Kurz D, King DK, Woolley T, Faber AJ, et al. Envolvimento em um site de autogestão do diabetes: padrões de uso e generalização do uso do programa. J Med Internet Res. 2011;13(1):e9. http://doi.org/10.2196/jmir.1391. PMid:21371992.
http://doi.org/10.2196/jmir.1391...

34 Meischke H, Lozano P, Zhou C, Garrison MM, Christakis D. Engajamento na “Asma do Meu Filho”: uma intervenção interativa de gerenciamento de asma pediátrica baseada na web. Int J Med Inform. 2011;80(11):765-74. http://doi.org/10.1016/j.ijmedinf.2011.08.002. PMid:21958551.
http://doi.org/10.1016/j.ijmedinf.2011.0...
-3535 Lee H, Friedman ME, Cukor P, Ahern D. Sistema interativo de resposta de voz (IVRS) em serviços de saúde. Nurs Outlook. 2003;51(6):277-83. http://doi.org/10.1016/S0029-6554(03)00161-1. PMid:14688763.
http://doi.org/10.1016/S0029-6554(03)001...
) discuss the association between sociodemographic factors and the use of health information technology; however, there was no clear relationship between socioeconomic profile and program retention.

A factor that may impact implementation from the service provider's perspective is the costs involved with telecommunications equipment. However, in the long term, telemedicine could dramatically reduce overall healthcare costs due to its potential to enable a fundamental restructuring of how healthcare is delivered. In countries like Brazil, with vast geographical areas, access to interventions in peripheral, inland, and rural regions is challenging. Therefore, it is necessary to create intervention alternatives that reduce costs, reach more people, and are effective in children's development. The potential of these tools to increase care resolution, shorten distances and isolation between care levels, and reducing referrals and health inequities is essential for regions of the country further from major centers (3636 Sarti TD, Almeida APSC. Incorporação de telessaúde na atenção primária à saúde no Brasil e fatores associados. Cad Saude Publica. 2022;38.).

Another factor in family engagement and adherence are programs that address skills that directly impact family dynamics. Some research on parental training shows that parents need guidance to understand and stimulate aspects of communication, difficult behaviors, and daily living activities(3737 Baharav E, Reiser C. Using telepractice in parent training in early autism. Telemed J E Health. 2010;16(6):727-31. http://doi.org/10.1089/tmj.2010.0029. PMid:20583950.
http://doi.org/10.1089/tmj.2010.0029...
). The studies found in this review focused on these themes, with three of them targeting children's communication skills, one on daily living activities, and another on inflexibility behaviors. Addressing topics that impact the family's daily life is crucial for adherence and retention in the intervention program.

Regarding parental engagement, the acquisition of communication and language skills by children with ASD were valid predictors of parents' emotions or attitudes, demonstrating that work focused on these skills can improve parent-child relationship. The studies that targeted communication showed gains in children's skills, such as increased social response, increased requests, improved phrase length, increased communicative intention, increased communicative exchanges with parents, and expanded expressive vocabulary. In the study(2323 Ibañez LV, Kobak K, Swanson A, Wallace L, Warren Z, Stone WL. Enhancing interactions during daily routines: a randomized controlled trial of a web-based tutorial for parents of young children with ASD. Autism Res. 2018;11(4):667-78. http://doi.org/10.1002/aur.1919. PMid:29316336.
http://doi.org/10.1002/aur.1919...
) that addressed daily living activities, there was a decrease in problem behaviors during these tasks and an increase in communication. In the study(2525 Kunze MG, Machalicek W, Wei Q, St. Joseph S. Coaching via telehealth: caregiver-mediated interventions for young children on the waitlist for an autism diagnosis using single-case design. J Clin Med. 2021;10(8):1654. http://doi.org/10.3390/jcm10081654. PMid:33924440.
http://doi.org/10.3390/jcm10081654...
) focusing on inflexibility, there was a decrease in these behaviors.

Indirect intervention, applied by families, gives parents a sense of empowerment, greater involvement in the therapeutic process, and helps reduce stress levels(3838 Ingersoll B, Wainer AL, Berger NI, Pickard KE, Bonter N. Comparison of a self-directed and therapist-assisted telehealth parent-mediated intervention for children with ASD: A Pilot RCT. J Autism Dev Disord. 2016;46(7):2275-84. http://doi.org/10.1007/s10803-016-2755-z. PMid:26922192.
http://doi.org/10.1007/s10803-016-2755-z...

39 Hermaszewska S, Sin J. End-user perspectives on the development of an online intervention for parents of children on the autism spectrum. Autism. 2021;25(5):1234-45. http://doi.org/10.1177/1362361320984895. PMid:33423522.
http://doi.org/10.1177/1362361320984895...
-4040 Kuhn JC, Carter AS. Maternal self-efficacy and associated parenting cognitions among mothers of children with autism. Am J Orthopsychiatry. 2006;76(4):564-75. http://doi.org/10.1037/0002-9432.76.4.564. PMid:17209724.
http://doi.org/10.1037/0002-9432.76.4.56...
).

CONCLUSION

This integrative review on the impacts of distance educational programs for caregivers of children with Autism Spectrum Disorder (ASD) demonstrated that remote parent training can be an effective means of improving parents' knowledge about ASD and their intervention skills. The reviewed studies showed that these programs can enhance the social behaviors and communication skills of children with ASD.

Additionally, this review contributes to the existing literature by consolidating the importance and efficacy of distance parental guidance for early intervention in children with ASD. Despite the diversity of approaches and methodologies, distance educational programs for parents/caregivers have proven to be a valuable tool for improving parental adherence to intervention and the development of children. Future research should continue to explore and refine these interventions, taking into account the individual characteristics and specific needs of the families involved.

  • Study conducted at Universidade de São Paulo – UNIFESP - São Paulo (SP), Brasil.
  • Financial support: nothing to declare.

REFERÊNCIAS

  • 1
    AMERICAN PSYCHIATRIC ASSOCIATION. Manual Diagnóstico e Estatístico de Transtornos Mentais. 5. ed. Porto Alegre: Grupo A; 2014.
  • 2
    Tager-Flusberg H, Paul R, Lord C. Language and communication in autism. In: Volkmar FR, Paul R, Klin A, Cohen D, editors. Handbook of autism and pervasive developmental disorders: diagnosis, development, neurobiology, and behavior. Hoboken: John Wiley & Sons, Inc.; 2013. p. 335-64.
  • 3
    Gupta AR, State MW. Autismo: genética. Rev Bras Psiquiatr. 2006;28(Suppl 1):S29-38. http://doi.org/10.1590/S1516-44462006000500005 PMid:16791389.
    » http://doi.org/10.1590/S1516-44462006000500005
  • 4
    Lampreia C. A perspectiva desenvolvimentista para a intervenção precoce no autismo. Estud Psicol. 2007;24(1):105-14. http://doi.org/10.1590/S0103-166X2007000100012
    » http://doi.org/10.1590/S0103-166X2007000100012
  • 5
    LaFrance DL, Weiss MJ, Kazemi E, Gerenser J, Dobres J. Multidisciplinary Teaming: Enhancing Collaboration through Increased Understanding. Behav Anal Pract. 2019;12(3):709-26. http://doi.org/10.1007/s40617-019-00331-y PMid:31976281.
    » http://doi.org/10.1007/s40617-019-00331-y
  • 6
    Maenner MJ, Warren Z, Williams AR, et al. Prevalência e características do transtorno do espectro do autismo entre crianças de 8 anos: rede de monitoramento de autismo e deficiências de desenvolvimento, 11 locais, Estados Unidos, 2020. MMWR Surveill Summ. 2023;72(2):1-14. http://doi.org/10.15585/mmwr.ss7202a1 PMid:36952288.
    » http://doi.org/10.15585/mmwr.ss7202a1
  • 7
    Soares AN, Silva TL, Franco AAAM, Maia TF. Cuidado em saúde às populações rurais: perspectivas e práticas de agentes comunitários de saúde. Physis. 2020;30(3):e300332. http://doi.org/10.1590/s0103-73312020300332
    » http://doi.org/10.1590/s0103-73312020300332
  • 8
    Sutherland R, David T, Roberts J. Telessaúde e autismo: uma busca sistemática e revisão da literatura. Int J Speech Lang Pathol. 2018;20(3):324-36. http://doi.org/10.1080/17549507.2018.1465123 PMid:29709201.
    » http://doi.org/10.1080/17549507.2018.1465123
  • 9
    Baharav E, Reiser C. Using telepractice in parent training in early autism. Telemed J E Health. 2010;16(6):727-31. http://doi.org/10.1089/tmj.2010.0029 PMid:20583950.
    » http://doi.org/10.1089/tmj.2010.0029
  • 10
    Lampreia C. A perspectiva desenvolvimentista para a intervenção precoce no autismo. Estud Psicol. 2007;24(1):105-14. http://doi.org/10.1590/S0103-166X2007000100012
    » http://doi.org/10.1590/S0103-166X2007000100012
  • 11
    Preece D, Symeou L, Stošić J, Troshanska J, Mavrou K, Theodorou E, et al. Accessing parental perspectives to inform the development of parent training in autism in south-eastern Europe. Eur J Spec Needs Educ. 2016;32(2):252-69. http://doi.org/10.1080/08856257.2016.1223399
    » http://doi.org/10.1080/08856257.2016.1223399
  • 12
    Alpert CL, Kaiser AP. Training parents as milieu language teachers. J Early Interv. 1992;16(1):31-52. http://doi.org/10.1177/105381519201600104
    » http://doi.org/10.1177/105381519201600104
  • 13
    Parsons D, Cordier R, Vaz S, Lee H. Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: systematic review. J Med Internet Res. 2017;19(8):e198. http://doi.org/10.2196/jmir.6651 PMid:28807892.
    » http://doi.org/10.2196/jmir.6651
  • 14
    Ingersoll B, Berger N. Parent engagement with a telehealth-based parent-mediated intervention program for children with autism spectrum disorders: predictors of program use and parent outcomes. J Med Internet Res. 2015;17(10):e227. http://doi.org/10.2196/jmir.4913 PMid:26443557.
    » http://doi.org/10.2196/jmir.4913
  • 15
    Ercole FF, Melo LS, Alcoforado CLGC. Integrative review versus systematic review. Reme: Rev Min Enferm. 2014;18(1):1-260. http://doi.org/10.5935/1415-2762.20140001
    » http://doi.org/10.5935/1415-2762.20140001
  • 16
    de Souza MT, da Silva MD, de Carvalho R. Integrative review: what is it? How to do it?. Einstein (São Paulo). 2010;8(1):102-6. http://doi.org/10.1590/S1679-45082010RW1134 PMid: 26761761.
    » http://doi.org/10.1590/S1679-45082010RW1134
  • 17
    Straus SE, Glasziou P, Richardson WS, Haynes RB. Evidence-Based Medicine E-Book: How to Practice and Teach EBM [Internet]. London: Elsevier Health Sciences; 2018 [cited 2022 May 10]. Available from: https://books.google.com.br/books?hl=pt-BR&lr=&id=BkRPDwAAQBAJ&oi=fnd&pg=PP1&dq=Strauss+SE
    » https://books.google.com.br/books?hl=pt-BR&lr=&id=BkRPDwAAQBAJ&oi=fnd&pg=PP1&dq=Strauss+SE
  • 18
    Melnyk BM, Fineout-Overholt E, Stillwell SB, Williamson KM. Prática baseada em evidências: passo a passo: os sete passos da prática baseada em evidências. AJN, Am J Nurs. 2010;110(1):51-3. https://doi.org/10.1097/01.NAJ.0000366056.06605.d2.
  • 19
    Akobeng AK. Principles of evidence based medicine. Arch Dis Child. 2005;90(8):837-40. http://doi.org/10.1136/adc.2005.071761 PMid:16040884.
    » http://doi.org/10.1136/adc.2005.071761
  • 20
    Flemming K. Critical appraisal. 2. Searchable questions. NT Learn Curve. 1999;3(2):6-7. PMid:10474424.
  • 21
    McGowan CJ, Pyne DB, Thompson KG, Rattray B. Warm-up strategies for sport and exercise: mechanisms and applications. Sports Med. 2015;45(11):1523-46. http://doi.org/10.1007/s40279-015-0376-x PMid:26400696.
    » http://doi.org/10.1007/s40279-015-0376-x
  • 22
    Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan: a web and mobile app for systematic reviews. Syst Rev. 2016;5(1):210. http://doi.org/10.1186/s13643-016-0384-4 PMid:27919275.
    » http://doi.org/10.1186/s13643-016-0384-4
  • 23
    Ibañez LV, Kobak K, Swanson A, Wallace L, Warren Z, Stone WL. Enhancing interactions during daily routines: a randomized controlled trial of a web-based tutorial for parents of young children with ASD. Autism Res. 2018;11(4):667-78. http://doi.org/10.1002/aur.1919 PMid:29316336.
    » http://doi.org/10.1002/aur.1919
  • 24
    Douglas SN, Kammes R, Nordquist E. Online communication training for parents of children with autism spectrum disorder. Comm Disord Q. 2017;39(3):415-25. http://doi.org/10.1177/1525740117727491
    » http://doi.org/10.1177/1525740117727491
  • 25
    Kunze MG, Machalicek W, Wei Q, St. Joseph S. Coaching via telehealth: caregiver-mediated interventions for young children on the waitlist for an autism diagnosis using single-case design. J Clin Med. 2021;10(8):1654. http://doi.org/10.3390/jcm10081654 PMid:33924440.
    » http://doi.org/10.3390/jcm10081654
  • 26
    Parsons D, Cordier R, Vaz S, Lee HC. Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: systematic review. J Med Internet Res. 2017;19(8):e198. http://doi.org/10.2196/jmir.6651 PMid:28807892.
    » http://doi.org/10.2196/jmir.6651
  • 27
    Guðmundsdóttir K, Ala’i-Rosales S, Sigurðardóttir ZG. Extending caregiver training via telecommunication for rural icelandic children with autism. Rural Spec Educ Q. 2018;38(1):26-42. http://doi.org/10.1177/8756870518783522
    » http://doi.org/10.1177/8756870518783522
  • 28
    Hong ER, Gong L, Ganz JB, Neely L. Self-paced and video-based learning: parent training and language skills in japanese children with ASD. Except Educ Int. 2018;28(2):1-19. https://doi.org/10.5206/eei.v28i2.7762
    » https://doi.org/10.5206/eei.v28i2.7762
  • 29
    Hjelm NM. Benefits and drawbacks of telemedicine. J Telemed Telecare. 2005;11(2):60-70. http://doi.org/10.1258/1357633053499886 PMid:15829049.
    » http://doi.org/10.1258/1357633053499886
  • 30
    Sarti TD, Almeida APSC. Incorporação de telessaúde na atenção primária à saúde no Brasil e fatores associados. Cad Saude Publica. 2022;38(4):PT252221. https://doi.org/10.1590/0102-311XPT252221
    » https://doi.org/10.1590/0102-311XPT252221
  • 31
    Vismara LA, McCormick CE, Wagner AL, Monlux K, Nadhan A, Young GS. Telehealth parent training in the Early Start Denver Model: results from a randomized controlled study. Focus Autism Other Dev Disabl. 2018;33(2):67-79. http://doi.org/10.1177/1088357616651064
    » http://doi.org/10.1177/1088357616651064
  • 32
    Ingersoll B, Berger N. Parent engagement with a telehealth-based parent-mediated intervention program for children with autism spectrum disorders: predictors of program use and parent outcomes. J Med Internet Res. 2015;17(10):e227. http://doi.org/10.2196/jmir.4913 PMid:26443557.
    » http://doi.org/10.2196/jmir.4913
  • 33
    Glasgow RE, Christiansen SM, Kurz D, King DK, Woolley T, Faber AJ, et al. Envolvimento em um site de autogestão do diabetes: padrões de uso e generalização do uso do programa. J Med Internet Res. 2011;13(1):e9. http://doi.org/10.2196/jmir.1391 PMid:21371992.
    » http://doi.org/10.2196/jmir.1391
  • 34
    Meischke H, Lozano P, Zhou C, Garrison MM, Christakis D. Engajamento na “Asma do Meu Filho”: uma intervenção interativa de gerenciamento de asma pediátrica baseada na web. Int J Med Inform. 2011;80(11):765-74. http://doi.org/10.1016/j.ijmedinf.2011.08.002 PMid:21958551.
    » http://doi.org/10.1016/j.ijmedinf.2011.08.002
  • 35
    Lee H, Friedman ME, Cukor P, Ahern D. Sistema interativo de resposta de voz (IVRS) em serviços de saúde. Nurs Outlook. 2003;51(6):277-83. http://doi.org/10.1016/S0029-6554(03)00161-1 PMid:14688763.
    » http://doi.org/10.1016/S0029-6554(03)00161-1
  • 36
    Sarti TD, Almeida APSC. Incorporação de telessaúde na atenção primária à saúde no Brasil e fatores associados. Cad Saude Publica. 2022;38.
  • 37
    Baharav E, Reiser C. Using telepractice in parent training in early autism. Telemed J E Health. 2010;16(6):727-31. http://doi.org/10.1089/tmj.2010.0029 PMid:20583950.
    » http://doi.org/10.1089/tmj.2010.0029
  • 38
    Ingersoll B, Wainer AL, Berger NI, Pickard KE, Bonter N. Comparison of a self-directed and therapist-assisted telehealth parent-mediated intervention for children with ASD: A Pilot RCT. J Autism Dev Disord. 2016;46(7):2275-84. http://doi.org/10.1007/s10803-016-2755-z PMid:26922192.
    » http://doi.org/10.1007/s10803-016-2755-z
  • 39
    Hermaszewska S, Sin J. End-user perspectives on the development of an online intervention for parents of children on the autism spectrum. Autism. 2021;25(5):1234-45. http://doi.org/10.1177/1362361320984895 PMid:33423522.
    » http://doi.org/10.1177/1362361320984895
  • 40
    Kuhn JC, Carter AS. Maternal self-efficacy and associated parenting cognitions among mothers of children with autism. Am J Orthopsychiatry. 2006;76(4):564-75. http://doi.org/10.1037/0002-9432.76.4.564 PMid:17209724.
    » http://doi.org/10.1037/0002-9432.76.4.564

Publication Dates

  • Publication in this collection
    02 Sept 2024
  • Date of issue
    2024

History

  • Received
    13 Dec 2023
  • Accepted
    21 May 2024
Sociedade Brasileira de Fonoaudiologia Al. Jaú, 684, 7º andar, 01420-002 São Paulo - SP Brasil, Tel./Fax 55 11 - 3873-4211 - São Paulo - SP - Brazil
E-mail: revista@codas.org.br