Developing an Evaluation Framework for Parent Education and Training in Autism Spectrum Disorder: Results of a Multi-stakeholder Process

2019 ◽  
Vol 49 (11) ◽  
pp. 4468-4481 ◽  
Author(s):  
John-Joe Dawson-Squibb ◽  
Petrus J. de Vries
Keyword(s):  
Autism Spectrum Disorder ◽  
Parent Education ◽  
Education And Training ◽  
Autism Spectrum ◽  
Evaluation Framework ◽  
Spectrum Disorder ◽  
Multi Stakeholder ◽  
And Training

A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting

Autism ◽  
2020 ◽  
Vol 24 (8) ◽  
pp. 2269-2284
Author(s):  
John-Joe Dawson-Squibb ◽  
Petrus J de Vries
Keyword(s):  
Autism Spectrum Disorder ◽  
Parent Education ◽  
Education And Training ◽  
Evidence Base ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Low Resource ◽  
Multi Stakeholder ◽  
Training Programmes ◽  
And Training

Despite the clear need for post-diagnostic parent/carer education and training in autism spectrum disorder, the evidence base is small, particularly in low-resource settings. Furthermore, few studies have examined the feasibility of intervention implementation. Here, we performed a comparative feasibility study of two Parent Education and Training programmes in a low-resource South African setting. EarlyBird/EarlyBird Plus, a UK-developed programme was compared to Autism Cares, a locally developed programme. The aims were to (1) examine acceptability, adaptation and perform limited efficacy testing and (2) use a multi-stakeholder panel and new autism spectrum disorder Parent Education and Training evaluation framework checklist to compare the programmes. A mixed-method, quasi-experimental design collected pre, post and 3-month follow-up data. Measures included standardised and custom-designed quantitative and qualitative data. In total, 18 parents participated in the EarlyBird/EarlyBird Plus programmes and 11 in Autism Cares. Strong parental acceptability for both programmes was found and adaptation suggestions were provided. Limited efficacy testing showed positive changes for parental stress, knowledge of autism spectrum disorder and child changes. The multi-stakeholder panel rated EarlyBird/EarlyBird Plus superior for next-step research based on implementation feasibility. Our findings contribute to the limited evidence base for autism spectrum disorder Parent Education and Training in low-resource environments and underline the need for evidence base of programmes to include not only intervention outcomes but also procedural and implementation outcomes. Lay Abstract After a diagnosis of autism, it is an important first step to give families information about autism and skills to help them support their child. These interventions are called Parent Education and Training programmes. Little is known about these programmes or if they can make a difference to families, particularly in countries with few autism resources. In this study, we compared two Parent Education and Training programmes in South Africa. EarlyBird/EarlyBird Plus was developed in the United Kingdom, and Autism Cares in South Africa. We wanted to know if parents found the programmes useful, and if any changes were required. We collected information from parents through questionnaires and interviews before and after the group. We also asked a panel of experts (including parents) to compare the programmes. In total, 18 parents attended the EarlyBird/EarlyBird Plus group and 11 attended the Autism Cares group. Parents found both programmes helpful and made suggestions for improvements. Parents showed less stress, more knowledge of autism, and saw improvements in their children. The expert panel rated EarlyBird/EarlyBird Plus as better because it was more supportive of parents and was seen as easier to run in the country. Our study showed that Parent Education and Training programmes are important, but that researchers must study not only the outcomes but also the implementation needs of these programmes.

Children with Autism and Congregations: Leader’s Assessments of Knowledge, Programming, and Potentialities

2019 ◽  
Vol 46 (4) ◽  
pp. 39-66
Author(s):  
Jeffrey Dale Thompson
Keyword(s):  
Autism Spectrum Disorder ◽  
Mixed Methods ◽  
Children With Autism ◽  
Education And Training ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Mixed Methods Approach ◽  
Congregational Leaders ◽  
And Training ◽  
Case Basis

The purpose of this study was to explore congregational responses to children with Autism Spectrum Disorder (ASD). The limited research around ASD and congregations reveals a lack of engagement with, and integration of, persons with ASD. In the current study, a mixed methods approach focused on congregational leaders’ knowledge, perceptions, and interests regarding ASD and related education and programming.  A quantitative element assessed leaders of congregations by means of a survey (N=121), while a qualitative element offered participants an opportunity to comment on the survey (n=51) and participate in an interview (n=12). An analysis of the data suggests that leaders’ knowledge of ASD was higher than anticipated but that formal programming was lacking in smaller churches. Responses in smaller churches were less formal, occurred on a case-by-case basis, and were led by professionals and parents native to those churches. Leaders reported an interest in more education and training regarding .                

Parent Education and Training for autism spectrum disorders: Scoping the evidence

Autism ◽  
2019 ◽  
Vol 24 (1) ◽  
pp. 7-25 ◽  
Author(s):  
John-Joe Dawson-Squibb ◽  
Eugene L Davids ◽  
Ashley J Harrison ◽  
Maggie A Molony ◽  
Petrus J de Vries
Keyword(s):  
United States ◽  
Autism Spectrum Disorder ◽  
Parent Education ◽  
Methodological Quality ◽  
The United States ◽  
Education And Training ◽  
Autism Spectrum ◽  
Quality Appraisal ◽  
Training Programmes ◽  
And Training

Empowering families of children with autism spectrum disorder through education and training is best practice. A wide range of Parent Education and Training programmes are delivered around the globe, but there is limited knowledge about the characteristics of these programmes, or about the research methods and outcomes used to evaluate them, particularly in countries outside the United States. We, therefore, performed a scoping review of all peer-reviewed Parent Education and Training publications outside the United States. A search was conducted between March and May 2017. Four reviewers extracted data and performed a mixed-methods quality appraisal of publications. Thirty-seven publications representing 32 unique programmes were identified. Publications described a highly diverse range of Parent Education and Training programmes across 20 countries and all continents except South America. The majority were group-based, but varied significantly in goals, modalities and duration. The majority of studies (86.4%) reported positive outcomes in relation to the core study objectives and only two studies reported some negative findings. Quality appraisal rated only 27% of studies to have met all the methodological quality criteria. Implementation factors such as manualisation, fidelity and cost were commented on infrequently. In spite of the clear need for Parent Education and Training programmes, our findings show that the research evidence-base in autism spectrum disorder outside the United States is relatively small, non-representative and in need of methodological quality improvements.

Parent Education in Studies With Nonverbal and Minimally Verbal Participants With Autism Spectrum Disorder: A Systematic Review

2020 ◽  
Vol 29 (2) ◽  
pp. 890-902
Author(s):  
Lynn Kern Koegel ◽  
Katherine M. Bryan ◽  
Pumpki Lei Su ◽  
Mohini Vaidya ◽  
Stephen Camarata
Keyword(s):  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Parent Education ◽  
Autism Spectrum ◽  
Verbal Communication ◽  
Fidelity Of Implementation ◽  
Spectrum Disorder ◽  
Education Programs ◽  
Minimally Verbal ◽  
Parent Education Programs

Purpose The purpose of this systematic review was to identify parent education procedures implemented in intervention studies focused on expressive verbal communication for nonverbal (NV) or minimally verbal (MV) children with autism spectrum disorder (ASD). Parent education has been shown to be an essential component in the habilitation of individuals with ASD. Parents of individuals with ASD who are NV or MV may particularly benefit from parent education in order to provide opportunities for communication and to support their children across the life span. Method ProQuest databases were searched between the years of 1960 and 2018 to identify articles that targeted verbal communication in MV and NV individuals with ASD. A total of 1,231 were evaluated to assess whether parent education was implemented. We found 36 studies that included a parent education component. These were reviewed with regard to (a) the number of participants and participants' ages, (b) the parent education program provided, (c) the format of the parent education, (d) the duration of the parent education, (e) the measurement of parent education, and (f) the parent fidelity of implementation scores. Results The results of this analysis showed that very few studies have included a parent education component, descriptions of the parent education programs are unclear in most studies, and few studies have scored the parents' implementation of the intervention. Conclusions Currently, there is great variability in parent education programs in regard to participant age, hours provided, fidelity of implementation, format of parent education, and type of treatment used. Suggestions are made to provide both a more comprehensive description and consistent measurement of parent education programs.

Revisiting an RCT study of a parent education program for Latinx parents in the United States: Are treatment effects maintained over time?

Autism ◽  
2021 ◽  
pp. 136236132110331
Author(s):  
Weiwen Zeng ◽  
Sandy Magaña ◽  
Kristina Lopez ◽  
Yue Xu ◽  
J Marisol Marroquín
Keyword(s):  
Autism Spectrum Disorder ◽  
Parent Education ◽  
Education Program ◽  
Child Outcomes ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Evidence Based ◽  
Communication Impairments ◽  
Parent Education Program

This study examined maintenance of treatment effects in a culturally tailored parent education program for Latinx families of children with autism spectrum disorder using a behavior maintenance framework. In a two-site randomized waitlist-control study, we compared differences in parent and child outcomes across three timepoints using linear mixed models to determine whether outcomes observed at 4 months after baseline (Time 2) were maintained for an additional 4-month period (Time 3). Parent outcomes included family empowerment, self-reported confidence in, and frequency of using evidence-based strategies. Child outcomes included parent-reported challenging behaviors, social communication impairments, and the number of services received. Participants were 109 Latina mothers (intervention = 54, control = 55) of children with autism spectrum disorder. Results showed that at Time 3, mothers in the intervention groups reported significantly greater confidence in and frequency of using evidence-based strategies, and that their child received significantly more services. Site-specific treatment differences were found in outcomes such as parent-reported empowerment and child social communication impairments. Findings suggest that the intervention for Latinx parents of children with autism spectrum disorder was efficacious and could be maintained, and that site-specific policy and service differences may need to be examined in future research to inform dissemination and implementation. Lay abstract Background: We conducted a follow-up investigation of a two-site randomized controlled trial in the United States. We examined whether the treatment effects in a culturally tailored parent education program for Latinx families of children with autism spectrum disorder were maintained over time. Methods: Using linear mixed models, we compared differences in parent and child outcomes across three timepoints: baseline, 4 months after baseline (Time 2), and 8 months after baseline (T3). Parent outcomes included family empowerment, self-reported confidence in, and frequency of using evidence-based strategies. Child outcomes included parent-reported challenging behaviors, social communication impairments, and the number of services received. Participants were 109 Latina mothers (intervention = 54, control = 55) of children with autism spectrum disorder. Results: After intervention at both Time 2 and Time 3 in both sites, mothers in the intervention groups reported significantly greater confidence in and frequency of using evidence-based strategies, and that their child received significantly more services. We also found that there were treatment differences across the two study sites in several outcomes. Implications: The intervention for Latinx parents of children with autism spectrum disorder was efficacious and could be maintained, and that site-specific policy and service differences may need to be examined in future research to inform dissemination and implementation.

scholarly journals Parental evaluation of a revised autism spectrum disorder diagnostic process for children under 36 months of age

2021 ◽  
Author(s):  
Jean-François Lemay ◽  
Shauna Langenberger ◽  
Scott McLeod
Keyword(s):  
Autism Spectrum Disorder ◽  
Early Intervention ◽  
Parent Education ◽  
Positive Impact ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Diagnostic Process ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
High Level

Abstract Background The Alberta Children’s Hospital-Autism Spectrum Disorder Diagnostic Clinic (ACH-ASDC) was restructured due to long wait times and unsustainable clinic workflow. Major changes included the initiation of pre- and post-ASD parent education sessions and distinct ASD screening appointments before the ASD diagnostic appointment. Methods We conducted a parental program evaluation in summer 2018 of the ACH-ASDC. We used a cross-sectional survey to evaluate key outcomes including parental satisfaction, and the percentage of families obtaining access to government supports and early intervention programs. Results For the 101 eligible patients diagnosed with ASD under 36 months of age 70 (69.3%) parents agreed to participate. The mean diagnostic age of the children diagnosed with ASD was 30.6 months (SD=4.1 months). There were no statistically significant age differences between biological sexes. Ninety-three per cent of parents felt that ASD educational sessions were useful, and 92% of parents were satisfied to very satisfied with the overall ASD diagnostic process. Ninety per cent of parents had access to at least one of the key resources available for ASD early intervention in our province following diagnosis. Parents reported a positive impact on intervention provided to their child in the areas of communication, social interaction, and behaviour. Conclusion Parents of children diagnosed with ASD expressed a high level of satisfaction with the restructured ACH-ASDC process. Implementing parent education sessions was well received and met parents’ needs. Parents were able to access intervention services following diagnosis and reported positive impacts for their child. Re-envisioning program approaches to incorporate novel strategies to support families should be encouraged.

scholarly journals Effect of Parent Training vs Parent Education on Behavioral Problems in Children With Autism Spectrum Disorder

JAMA ◽  
2015 ◽  
Vol 313 (15) ◽  
pp. 1524 ◽  
Author(s):  
Karen Bearss ◽  
Cynthia Johnson ◽  
Tristram Smith ◽  
Luc Lecavalier ◽  
Naomi Swiezy ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Parent Training ◽  
Parent Education ◽  
Behavioral Problems ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder

scholarly journals Parent education in autism spectrum disorder - a review of the literature

2017 ◽  
Vol 53 (1) ◽  
pp. 128-138 ◽  
Author(s):  
David Preece ◽  
Vladimir Trajkovski
Keyword(s):  
Autism Spectrum Disorder ◽  
Parent Education ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Review Of The Literature

Obitelji koje žive s poremećajem iz spektra autizma suočavaju se s mnogim izazovima koji ne utječu samo na dijete s tim poremećajem i njegov razvoj, već i na funkcioniranje obitelji i kvalitetu njezina života. Edukacija roditelja o poremećaju iz spektra autizma identificirana je kao prioritetna intervencija u području ove problematike, kako na nacionalnoj, tako i na međunarodnoj razini. Dok je, s jedne strane, literature o osposobljavanju (treningu) roditelja u okviru specifičnih terapijskih pristupa opsežna, pretragom baza podataka pronašli smo svega 12 članaka koji izvještavaju o istraživanjima edukacije roditelja. Ukupno gledajući, ta istraživanja pokazuju pozitivne učinke edukacije roditelja: ona može doprinjeti redukciji stresa i anksioznosti, boljem nošenju s teškoćama, poboljšanju interakcija i komunikacije između roditelja i djeteta, boljem razumijevanju poremećaja iz spektra autizma, učinkovitosti, povjerenju i poboljšanju kvalitete života roditelja. Razmatraju se četiri ključne teme: utjecaj, provedba, sadržaj i lokalna/kulturna sporna pitanja edukacije roditelja, a također i slabosti i teškoće zamijećene u dosadašnjim istraživanjima, kao i potreba za daljnjim istraživanjima na području ovih intervencija.

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