Article

Using implementation science frameworks to explore barriers and facilitators for parents' use of therapeutic strategies following a parent-mediated autism intervention

Authors:
To read the full-text of this research, you can request a copy directly from the authors.

Abstract

Lay abstract: Many early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of therapeutic strategies learned in such interventions. This study set out to interview parents who had participated in a research trial of the Paediatric Autism Communication Therapy-Generalised intervention. We interviewed 27 caregivers and explored their use of the strategies up to 2 years after the end of the research trial. Qualitative frameworks were used to inform interview questions and data analysis. These frameworks focused on a range of contextual factors, including parents' characteristics, their context and features of the intervention. Parents reported barriers and facilitators to using Paediatric Autism Communication Therapy-Generalised strategies across three themes: Motivating Factors; Opportunity and Support; Parent Characteristics. One of these themes, Motivating Factors, was further divided into the subthemes Compatibility and Buy-In and Alignment of Goals and Outcomes. Almost all parents reported continued use of the Paediatric Autism Communication Therapy-Generalised strategies. Facilitators included parental confidence in using the strategies and barriers included child's behaviour. Consideration of these factors can inform ways to better support parents in future autism interventions.

No full-text available

Request Full-text Paper PDF

To read the full-text of this research,
you can request a copy directly from the authors.

ResearchGate has not been able to resolve any citations for this publication.
Article
Full-text available
Background This implementation feasibility study was conducted to determine whether an evidence-based parent-implemented distance-learning intervention model for young children at high likelihood of having ASD could be implemented at fidelity by Part C community providers and by parents in low-resource communities. Methods The study used a community-academic partnership model to adapt an evidence-based intervention tested in the current pilot trial involving randomization by agency in four states and enrollment of 35 coaches and 34 parent-family dyads. After baseline data were gathered, providers in the experimental group received 12–15 h of training while control providers received six webinars on early development. Providers delivered 6 months of intervention with children-families, concluding with data collection. Regression analyses were used to model outcomes of the coach behaviors, the parent fidelity ratings, and child outcomes. Results A block design model-building approach was used to test the null model followed by the inclusion of group as a predictor, and finally the inclusion of the planned covariates. Model fit was examined using changes in R ² and F -statistic. As hypothesized, results demonstrated significant gains in (1) experimental provider fidelity of coaching implementation compared to the control group; and (2) experimental parent fidelity of implementation compared to the control group. There were no significant differences between groups on child developmental scores. Conclusions Even though the experimental parent group averaged less than 30 min of intervention weekly with providers in the 6 months, both providers and parents demonstrated statistically significant gains on the fidelity of implementation scores with moderate effect sizes compared to control groups. Since child changes in parent-mediated models are dependent upon the parents’ ability to deliver the intervention, and since parent delivery is dependent upon providers who are coaching the parents, these results demonstrated that two of these three links of the chain were positively affected by the experimental implementation model. However, a lack of significant differences in child group gains suggests that further work is needed on this model. Factors to consider include the amount of contact with the provider, the amount of practice children experience, the amount of contact both providers and parents spend on training materials, and motivational strategies for parents, among others. Trial registration Registry of Efficacy and Effectiveness Studies: #4360, registered 1xx, October, 2020 – Retrospectively registered, https://sreereg.icpsr.umich.edu/sreereg/
Preprint
Full-text available
Background: This implementation feasibility study was conducted to determine whether an evidence-based parent -implemented distance-learning intervention model for young children at high likelihood of having ASD could be implemented at fidelity by Part C community providers and by parents in low resource communities. Methods: The study used a community academic partnership model to adapt an evidence-based intervention tested in the current pilot trial involving randomization by agency in four states and enrollment of 35 coaches and 34 parent-family dyads. After baseline data were gathered, providers in the experimental group received up to 12 hours of training while control providers received six webinars on early development. Six months of intervention with children-families then followed, concluding with data collection. Regression analyses were used to model outcomes of the coach behaviors, the parent fidelity ratings, and child outcomes. Results: A block design model-building approach was used to test the null model followed by the inclusion of group as a predictor, and finally the inclusion of the planned covariates. Model fit was examined using changes in R2 and F-statistic. As hypothesized, results demonstrated significant gains in (1) experimental provider fidelity of implementation compared to the control group; and (2) experimental parent fidelity of implementation compared to the control group. There were no significant differences between groups in child developmental scores. Conclusions: Even though the experimental parent group averaged less than 30 minutes weekly with providers in the 6 months, both providers and parents demonstrated statistically significant gains with moderate effect sizes compared to control groups. Since child changes in parent mediated models are dependent upon the parents’ ability to deliver the intervention, and since parent delivery is dependent upon providers who are coaching the parents, these results demonstrated that two of these three links of the chain were positively affected by the experimental implementation model. However, lack of significant differences in child group gains suggests that further work is needed on this model. Factors to consider include amount of contact with the provider, amount of practice children experience, amount of contact both providers and parents spend on training materials, and motivational strategies for parents, among others. Trial registration: Registry of Efficacy and Effectiveness Studies: #4360, registered 1xx, October, 2020 – Retrospectively registered, http://
Article
Full-text available
Lay abstract: Paediatric Autism Communication Therapy is an intervention for young children with autism spectrum disorder that focuses on parent-child communication. In Paediatric Autism Communication Therapy, the therapist and parent watch videos of the parent and child playing together. The therapist coaches the parent to carefully observe the child's communication and to interact with their child in a more sensitive and responsive way. Parents are encouraged to use the strategies with their child at home. Paediatric Autism Communication Therapy has been shown to lead to long-term improvements in parent-child communication and family quality of life. This study aimed to explore parents' perceptions of their participation in Paediatric Autism Communication Therapy. Interviews were carried out by an independent researcher with 18 parents. Parents discussed the learning processes they went through when working with Paediatric Autism Communication Therapy therapists and carrying out home practice. Some parents described initial doubts about the approach and hesitations about being videoed and analysing video material. In time, most parents came to really value the therapy and their relationship with the therapist. They reported positive changes in their interaction and relationship with their child and improvements to their child's communication and interaction. Some also highlighted poignant realisations and emotional challenges associated with taking part in this post-diagnosis therapy. Practical difficulties were also emphasised, including the time commitment, accessibility of therapy venues and difficulties in occupying the child during therapist-parent discussion. Implications for the clinical practice of parent-mediated interventions are discussed.
Article
Full-text available
Background Little research has targeted multiple-level barriers and facilitators in school-based parental support programmes. This qualitative study aims to describe barriers and facilitators, at organisational and personal levels, that teachers and parents in disadvantaged settings in Sweden perceived as influencing the implementation of the Healthy School Start II (HSS II) intervention. Methods Data collection, analysis and interpretation were guided by the Consolidated Framework for Implementation Research (CFIR). Focus groups and interviews were conducted with 14 parents and ten teachers within the HSS II trial. Data were analysed using qualitative content analysis in a deductive step using the three CFIR domains–inner and outer setting, and personal characteristics–followed by an inductive analysis. Results The theme ‘being on the same page–getting burdened teachers and parents to work on common ground’ was found. Among teachers, barriers and facilitators were related to the structure of the schoolwork and curriculum, involvement from other staff and school management, the practical school workday, perception of high family needs but low parental interest, insufficient resources in the families, and teacher’s personal knowledge, interests, and opinions about health and food. For parents, barriers and facilitators were related to the perceived family needs and resources, parents’ health knowledge, consensus about healthy behaviours and ability to cooperate, and school involvement in health issues and the intervention. Conclusion Interventions should facilitate parents’ and teachers’ work on common ground, with activities suitable for a stressful and burdensome workday and everyday life. This could be achieved by integrating evidence-based practices within school routines, and including activities that are practicable despite parents’ stressful lives, and that increase parental consensus about promoting health. Strategies to increase involvement of parents in families with high needs are necessary. Also, this study suggests an expansion of the CFIR to capture the interface between different micro-level organisations, and account for several delivering/receiving organisations.
Article
Full-text available
Parent mediated interventions have the potential to positively influence the interactions and developmental outcomes of children with autism spectrum disorder (ASD). However, a range of factors relating to children, parents and caregivers, and study design may impact on outcomes and thus the generalizability of these interventions to the broader community. The objective of this review was to examine factors that may influence the feasibility, appropriateness, effectiveness, and generalizability of parent mediated interventions for children with ASD. We conducted a systematic review, yielding 41 articles. There was substantial variability in the intervention type, intensity, and study quality. Notably, 46 different inclusion/exclusion criteria were reported across studies including factors relating to children's development, access to other services, comorbidities, parental factors, and access to the intervention. Fifteen articles included examination of 45 different factors potentially associated with, or influencing, intervention outcomes including child (e.g., language skills, ASD severity, cognition) and parent (e.g., adherence and fidelity, education) factors. Although there is clear evidence for an increasingly sophisticated (e.g., systematic phased research for some interventions) and diverse (e.g., studies in geographical diverse contexts including low‐resource communities) approach to research examining parent mediated interventions, there remains a need for improved study quality and measurement consistency in research, including a detailed examination of factors that may predict, moderate, and mediate intervention effectiveness for children and their parents. Autism Res 2019, © 2019 International Society for Autism Research, Wiley Periodicals, Inc. Parent mediated interventions—in which parents adapt their own behavior or deliver interventions to help their children learn—appear to be effective for some children with autism spectrum disorder. In this review, we identified a range of child, parent, and study design factors that may influence intervention outcomes and ultimately the uptake of these approaches in the community. We suggest that research in this area could be further improved by ensuring that studies include diverse groups of children and parents, and by using study designs that help to establish not only if interventions work, but for whom they work best and why.
Article
Full-text available
Background: A fundamental challenge of implementation is identifying contextual determinants (i.e., barriers and facilitators) and determining which implementation strategies will address them. Numerous conceptual frameworks (e.g., the Consolidated Framework for Implementation Research; CFIR) have been developed to guide the identification of contextual determinants, and compilations of implementation strategies (e.g., the Expert Recommendations for Implementing Change compilation; ERIC) have been developed which can support selection and reporting of implementation strategies. The aim of this study was to identify which ERIC implementation strategies would best address specific CFIR-based contextual barriers. Methods: Implementation researchers and practitioners were recruited to participate in an online series of tasks involving matching specific ERIC implementation strategies to specific implementation barriers. Participants were presented with brief descriptions of barriers based on CFIR construct definitions. They were asked to rank up to seven implementation strategies that would best address each barrier. Barriers were presented in a random order, and participants had the option to respond to the barrier or skip to another barrier. Participants were also asked about considerations that most influenced their choices. Results: Four hundred thirty-five invitations were emailed and 169 (39%) individuals participated. Respondents had considerable heterogeneity in opinions regarding which ERIC strategies best addressed each CFIR barrier. Across the 39 CFIR barriers, an average of 47 different ERIC strategies (SD = 4.8, range 35 to 55) was endorsed at least once for each, as being one of seven strategies that would best address the barrier. A tool was developed that allows users to specify high-priority CFIR-based barriers and receive a prioritized list of strategies based on endorsements provided by participants. Conclusions: The wide heterogeneity of endorsements obtained in this study's task suggests that there are relatively few consistent relationships between CFIR-based barriers and ERIC implementation strategies. Despite this heterogeneity, a tool aggregating endorsements across multiple barriers can support taking a structured approach to consider a broad range of strategies given those barriers. This study's results point to the need for a more detailed evaluation of the underlying determinants of barriers and how these determinants are addressed by strategies as part of the implementation planning process.
Article
Full-text available
The purpose of this study was to examine common and unique factors influencing implementation process for two evidence-based interventions for children with autism spectrum disorder (ASD) in mental health and education service contexts. This study prospectively collected qualitative data from intervention developers and research staff on the implementation process within the context of two separate ASD intervention effectiveness trials. Results reveal common and unique factors influencing implementation in both study contexts. Implementation leadership and provider attitudes and motivation emerge as key influences on implementation across systems. These findings provide promising targets for modular implementation interventions that can be leveraged within growing, large-scale translation efforts in usual care.
Article
Full-text available
Objective Children with autism spectrum disorder (ASD) are at an increased risk to develop problem behavior, which can have deleterious effects on child and parental well-being. Because of this, parents are often provided with Behavioral Parent Training (BPT). However, attrition rates in BPT are high, and there is a relative dearth of research investigating factors that influence parental engagement in BPT. Methods We ran seven semi-structured online focus groups with a total of 30 parents of children with ASD and related disabilities. Parents were interviewed in order to gain a greater understanding of variables that enable or pose barriers to parental engagement in BPT. An inductive qualitative analysis was conducted by two independent authors. Results Our analyses revealed three themes indicating the need for (a) supportive, professional feedback; (b) accessible, flexible, and affordable training; and (c) social-emotional support and community connection in BPT for parents of children with ASD. Conclusions Results from this study suggest that parental engagement in BPT for children with ASD may be enhanced if it is relevant to the needs of families, facilitated by responsive professionals, flexible, and readily accessible. Additionally, parents may benefit from BPT that includes social and emotional support, such as assistance connecting with other families and evidence-based strategies to manage the stress associated with parenting a child with ASD and challenging behavior.
Article
Full-text available
Background: Prior evidence shows that behaviours closely related to the intervention delivered for autism are amenable to change, but it is more difficult to generalise treatment effects beyond the intervention context. We test an early autism intervention designed to promote generalisation of therapy-acquired skills into home and school contexts to improve adaptive function and reduce symptoms. A detailed mechanism study will address the process of such generalisation. Objective 1 will be to test if the PACT-G intervention improves autism symptom outcome in the home and school context of the intervention as well as in the primary outcome research setting. Objective 2 will use the mechanism analysis to test for evidence of acquired skills from intervention generalizing across contexts and producing additive effects on primary outcome. Methods/design: This is a three-site, two-parallel-group, randomised controlled trial of the experimental treatment plus treatment as usual (TAU) versus TAU alone. Children aged 2-11 years (n = 244 (122 intervention/122 TAU; ~ 82/site) meeting criteria for core autism will be eligible. The experimental intervention builds on a clinic-based Pre-school Autism Communication Treatment model (PACT), delivered with the primary caregiver, combined with additional theory- and evidence-based strategies designed to enhance the generalisation of effects into naturalistic home and education contexts. The control intervention will be TAU. Primary outcome: autism symptom outcome, researcher-assessed using a standardised protocol. Secondary outcomes: autism symptoms, child interaction with parent or teacher, language and reported functional outcomes in home and school settings. Outcomes measured at baseline and 12-month endpoint in all settings with interim interaction measurements (7 months) to test treatment effect mechanisms. Primary analysis will estimate between-group difference in primary outcome using analysis of covariance with test of homogeneity of effect across age group. Mechanism analysis will use regression models to test for mediation on primary outcome by parent-child and teaching staff-child social interaction. Discussion: This is an efficacy and mechanism trial of generalising evidence-based autism treatment into home and school settings. It will provide data on whether extending treatment across naturalistic contexts enhances overall effect and data on the mechanism in autism development of the generalisation of acquired developmental skills across contexts. Trial registration: ISRCTN, ID: 25378536 . Prospectively registered on 9 March 2016.
Article
Full-text available
Engagement in behavioral parent training programs continues to be a barrier to service delivery. Parental readiness is an important construct for understanding parental engagement in parent training services, as these programs place a high level of action-oriented demands on caregivers. The present study examines the performance of one parental readiness measure, the Readiness, Efficacy, Attributions, Defensiveness, and Importance Scale—Short Form (READI-SF) in a community-based sample. Participants included 103 families of children ages three to seven recruited from an urban charter school. Mothers completed an abbreviated version of the READI as well as indices of child disruptive behavior and a second measure of parental readiness. The psychometric properties and factor structure of the READI-SF are explored as well as indices of reliability and validity. Exploratory factor analysis revealed a three-factor model of readiness to change, treatment readiness, and perceived importance of the problem. Analyses also supported the validity and clinical utility of the measure, as READI-SF scores were found to predict attendance at a one-time parenting group. Lastly, the study examines the relationship between parental readiness and child disruptive behavior. Limitations and future directions are discussed.
Article
Full-text available
Background Understanding sustainability is one of the significant implementation science challenges. One of the big challenges in researching sustainability is the lack of consistent definitions in the literature. Most implementation studies do not present a definition of sustainability, even when assessing sustainability. The aim of the current study was to systematically develop a comprehensive definition of sustainability based on definitions already used in the literature. Methods We searched for knowledge syntheses of sustainability and abstracted sustainability definitions from the articles identified through any relevant systematic and scoping reviews. The constructs in the abstracted sustainability definitions were mapped to an existing definition. The comprehensive definition of sustainability was revised to include emerging constructs. Results We identified four knowledge syntheses of sustainability, which identified 209 original articles. Of the 209 articles, 24 (11.5%) included a definition of sustainability. These definitions were mapped to three constructs from an existing definition, and nine new constructs emerged. We reviewed all constructs and created a revised definition: (1) after a defined period of time, (2) a program, clinical intervention, and/or implementation strategies continue to be delivered and/or (3) individual behavior change (i.e., clinician, patient) is maintained; (4) the program and individual behavior change may evolve or adapt while (5) continuing to produce benefits for individuals/systems. All 24 definitions were remapped to the comprehensive definition (percent agreement among three coders was 94%). Of the 24 definitions, 17 described the continued delivery of a program (70.8%), 17 mentioned continued outcomes (70.8%), 13 mentioned time (54.2%), 8 addressed the individual maintenance of a behavior change (33.3%), and 6 described the evolution or adaptation (25.0%). Conclusions We drew from over 200 studies to identify 24 existing definitions of sustainability. Based on these definitions, we identified five key sustainability constructs, which can be used as the basis for future research on sustainability. Our next step is to identify sustainability frameworks and develop a meta-framework using a concept mapping approach to consolidate the factors and considerations across sustainability frameworks. Electronic supplementary material The online version of this article (doi:10.1186/s13012-017-0637-1) contains supplementary material, which is available to authorized users.
Article
Full-text available
Background Implementing new practices requires changes in the behaviour of relevant actors, and this is facilitated by understanding of the determinants of current and desired behaviours. The Theoretical Domains Framework (TDF) was developed by a collaboration of behavioural scientists and implementation researchers who identified theories relevant to implementation and grouped constructs from these theories into domains. The collaboration aimed to provide a comprehensive, theory-informed approach to identify determinants of behaviour. The first version was published in 2005, and a subsequent version following a validation exercise was published in 2012. This guide offers practical guidance for those who wish to apply the TDF to assess implementation problems and support intervention design. It presents a brief rationale for using a theoretical approach to investigate and address implementation problems, summarises the TDF and its development, and describes how to apply the TDF to achieve implementation objectives. Examples from the implementation research literature are presented to illustrate relevant methods and practical considerations. Methods Researchers from Canada, the UK and Australia attended a 3-day meeting in December 2012 to build an international collaboration among researchers and decision-makers interested in the advancing use of the TDF. The participants were experienced in using the TDF to assess implementation problems, design interventions, and/or understand change processes. This guide is an output of the meeting and also draws on the authors’ collective experience. Examples from the implementation research literature judged by authors to be representative of specific applications of the TDF are included in this guide. Results We explain and illustrate methods, with a focus on qualitative approaches, for selecting and specifying target behaviours key to implementation, selecting the study design, deciding the sampling strategy, developing study materials, collecting and analysing data, and reporting findings of TDF-based studies. Areas for development include methods for triangulating data, e.g. from interviews, questionnaires and observation and methods for designing interventions based on TDF-based problem analysis. Conclusions We offer this guide to the implementation community to assist in the application of the TDF to achieve implementation objectives. Benefits of using the TDF include the provision of a theoretical basis for implementation studies, good coverage of potential reasons for slow diffusion of evidence into practice and a method for progressing from theory-based investigation to intervention. Electronic supplementary material The online version of this article (doi:10.1186/s13012-017-0605-9) contains supplementary material, which is available to authorized users.
Article
Full-text available
Caregiver report is the most common measure of change in pediatric psychiatry. Yet, placebo response rates pose significant challenges to reliably detect a treatment response. The present study simulated an eight-week clinical trial protocol for Autism Spectrum Disorder (ASD) for the purpose of testing the feasibility and validity of several outcome measures. Twenty caregivers answered questions about their child's behavior on their smartphone each week and completed a battery of paper questionnaires during weeks one and eight. No treatment was administered. Caregivers reported a significant decrease in problem behaviors on the Aberrant Behavior Checklist (ABC) (29% decrease) and general ASD behaviors on the Social Responsiveness Scale (SRS) (7% decrease). There was also a trend of behavior improvement from smartphone questions but no significant changes in clinical ratings of core diagnostic features of ASD. Participation in a comprehensive protocol in the absence of a particular treatment significantly influenced how caregivers perceived the severity of their children's problem behaviors. These placebo-like effects represent substantial challenges for randomized controlled trials (RCTs) that use treatment as usual and have implications for future behavioral and pharmacological treatment trial designs. Autism Res 2017. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.
Article
Full-text available
Background Over 60 implementation frameworks exist. Using multiple frameworks may help researchers to address multiple study purposes, levels, and degrees of theoretical heritage and operationalizability; however, using multiple frameworks may result in unnecessary complexity and redundancy if doing so does not address study needs. The Consolidated Framework for Implementation Research (CFIR) and the Theoretical Domains Framework (TDF) are both well-operationalized, multi-level implementation determinant frameworks derived from theory. As such, the rationale for using the frameworks in combination (i.e., CFIR + TDF) is unclear. The objective of this systematic review was to elucidate the rationale for using CFIR + TDF by (1) describing studies that have used CFIR + TDF, (2) how they used CFIR + TDF, and (2) their stated rationale for using CFIR + TDF. Methods We undertook a systematic review to identify studies that mentioned both the CFIR and the TDF, were written in English, were peer-reviewed, and reported either a protocol or results of an empirical study in MEDLINE/PubMed, PsycInfo, Web of Science, or Google Scholar. We then abstracted data into a matrix and analyzed it qualitatively, identifying salient themes. Findings We identified five protocols and seven completed studies that used CFIR + TDF. CFIR + TDF was applied to studies in several countries, to a range of healthcare interventions, and at multiple intervention phases; used many designs, methods, and units of analysis; and assessed a variety of outcomes. Three studies indicated that using CFIR + TDF addressed multiple study purposes. Six studies indicated that using CFIR + TDF addressed multiple conceptual levels. Four studies did not explicitly state their rationale for using CFIR + TDF. Conclusions Differences in the purposes that authors of the CFIR (e.g., comprehensive set of implementation determinants) and the TDF (e.g., intervention development) propose help to justify the use of CFIR + TDF. Given that the CFIR and the TDF are both multi-level frameworks, the rationale that using CFIR + TDF is needed to address multiple conceptual levels may reflect potentially misleading conventional wisdom. On the other hand, using CFIR + TDF may more fully define the multi-level nature of implementation. To avoid concerns about unnecessary complexity and redundancy, scholars who use CFIR + TDF and combinations of other frameworks should specify how the frameworks contribute to their study. Trial registration PROSPERO CRD42015027615 Electronic supplementary material The online version of this article (doi:10.1186/s13012-016-0534-z) contains supplementary material, which is available to authorized users.
Article
Full-text available
A number of studies of parent-mediated interventions in autism spectrum disorder have been published in the last 15 years. We reviewed 19 randomized clinical trials of parent-mediated interventions for children with autism spectrum disorder between the ages of 1 and 6 years and conducted a meta-analysis on their efficacy. Meta-analysis outcomes were autism spectrum disorder symptom severity, socialization, communication-language, and cognition. Quality of evidence was rated as moderate for autism spectrum disorder symptom severity, communication-language, and cognition, and very low for socialization. Weighted Hedges’ g varied from 0.18 (communication-language) to 0.27 (socialization) and averaged 0.23 across domains. We also examined the relationship between outcome and dose of parent training, type of control group, and type of informant (parent and clinician). Outcomes were not significantly different based on dose of treatment. Comparing parent training to treatment-as-usual did not result in significantly different treatment effects than when parent training was compared to an active comparison group. Based on parent report only, treatment effects were significant for communication-language and non-significant for socialization, yet the opposite was found based on clinician-rated tools. This meta-analysis suggests that while most outcome domains of parent-delivered intervention are associated with small effects, the quality of research is improving.
Article
Full-text available
Background: It is not known whether early intervention can improve long-term autism symptom outcomes. We aimed to follow-up the Preschool Autism Communication Trial (PACT), to investigate whether the PACT intervention had a long-term effect on autism symptoms and continued effects on parent and child social interaction. Methods: PACT was a randomised controlled trial of a parent-mediated social communication intervention for children aged 2-4 years with core autism. Follow-up ascertainment was done at three specialised clinical services centres in the UK (London, Manchester, and Newcastle) at a median of 5·75 years (IQR 5·42-5·92) from the original trial endpoint. The main blinded outcomes were the comparative severity score (CSS) from the Autism Diagnostic Observation Schedule (ADOS), the Dyadic Communication Assessment Measure (DCMA) of the proportion of child initiatiations when interacting with the parent, and an expressive-receptive language composite. All analyses followed the intention-to-treat principle. PACT is registered with the ISRCTN registry, number ISRCTN58133827. Findings: 121 (80%) of the 152 trial participants (59 [77%] of 77 assigned to PACT intervention vs 62 [83%] of 75 assigned to treatment as usual) were traced and consented to be assessed between July, 2013, and September, 2014. Mean age at follow-up was 10·5 years (SD 0·8). Group difference in favour of the PACT intervention based on ADOS CSS of log-odds effect size (ES) was 0·64 (95% CI 0·07 to 1·20) at treatment endpoint and ES 0·70 (95% CI -0·05 to 1·47) at follow-up, giving an overall reduction in symptom severity over the course of the whole trial and follow-up period (ES 0·55, 95% CI 0·14 to 0·91, p=0·004). Group difference in DCMA child initiations at follow-up showed a Cohen's d ES of 0·29 (95% CI -0.02 to 0.57) and was significant over the course of the study (ES 0·33, 95% CI 0·11 to 0·57, p=0·004). There were no group differences in the language composite at follow-up (ES 0·15, 95% CI -0·23 to 0·53). Interpretation: The results are the first to show long-term symptom reduction after a randomised controlled trial of early intervention in autism spectrum disorder. They support the clinical value of the PACT intervention and have implications for developmental theory. Funding: Medical Research Council.
Article
Full-text available
Background: In 2009, Damschroder et al. developed the Consolidated Framework for Implementation Research (CFIR), which provides a comprehensive listing of constructs thought to influence implementation. This systematic review assesses the extent to which the CFIR's use in implementation research fulfills goals set forth by Damschroder et al. in terms of breadth of use, depth of application, and contribution to implementation research. Methods: We searched Scopus and Web of Science for publications that cited the original CFIR publication by Damschroder et al. (Implement Sci 4:50, 2009) and downloaded each unique result for review. After applying exclusion criteria, the final articles were empirical studies published in peer-review journals that used the CFIR in a meaningful way (i.e., used the CFIR to guide data collection, measurement, coding, analysis, and/or reporting). A framework analysis approach was used to guide abstraction and synthesis of the included articles. Results: Twenty-six of 429 unique articles (6 %) met inclusion criteria. We found great breadth in CFIR application; the CFIR was applied across a wide variety of study objectives, settings, and units of analysis. There was also variation in the method of included studies (mixed methods (n = 13); qualitative (n = 10); quantitative (n = 3)). Depth of CFIR application revealed some areas for improvement. Few studies (n = 3) reported justification for selection of CFIR constructs used; the majority of studies (n = 14) used the CFIR to guide data analysis only; and few studies investigated any outcomes (n = 11). Finally, reflections on the contribution of the CFIR to implementation research were scarce. Conclusions: Our results indicate that the CFIR has been used across a wide range of studies, though more in-depth use of the CFIR may help advance implementation science. To harness its potential, researchers should consider how to most meaningfully use the CFIR. Specific recommendations for applying the CFIR include explicitly justifying selection of CFIR constructs; integrating the CFIR throughout the research process (in study design, data collection, and analysis); and appropriately using the CFIR given the phase of implementation of the research (e.g., if the research is post-implementation, using the CFIR to link determinants of implementation to outcomes).
Article
Full-text available
The processes of analysing qualitative data, particularly the stage between coding and publication, are often vague and/or poorly explained within addiction science and research more broadly. A simple but rigorous and transparent technique for analysing qualitative textual data, developed within the field of addiction, is described. The technique, Iterative Categorisation (IC), is suitable for use with inductive and deductive codes and can support a range of common analytical approaches, e.g. thematic analysis, Framework, constant comparison, analytic induction, content analysis, conversational analysis, discourse analysis, interpretative phenomenological analysis and narrative analysis. Once the data have been coded, the only software required is a standard word processing package. Worked examples are provided. This article is protected by copyright. All rights reserved.
Article
Full-text available
Implementing behavioral health interventions is a complicated process. It has been suggested that implementation strategies should be selected and tailored to address the contextual needs of a given change effort; however, there is limited guidance as to how to do this. This article proposes four methods (concept mapping, group model building, conjoint analysis, and intervention mapping) that could be used to match implementation strategies to identified barriers and facilitators for a particular evidence-based practice or process change being implemented in a given setting. Each method is reviewed, examples of their use are provided, and their strengths and weaknesses are discussed. The discussion includes suggestions for future research pertaining to implementation strategies and highlights these methods’ relevance to behavioral health services and research.
Article
Full-text available
This is a pilot study of the effectiveness of Project ImPACT, a parent-mediated intervention for ASD delivered in a community program. The primary aim was to compare child and parent outcomes between the intervention group and a community comparison for 30 young children with ASD at baseline and 12 weeks. The secondary aim was to identify parent factors associated with changes in child outcomes. Results indicated significant improvement in child communication skills and a strong trend for parent intervention adherence for the intervention group from baseline to 12 weeks. Higher baseline parenting stress was negatively related to child social gains from baseline to 12 weeks. Findings provide further support for delivering parent-mediated interventions in community settings to children with ASD.
Article
Full-text available
Purpose: The purpose of this study was to investigate parent implementation of home-based therapy regimens, and the relationship between implementation and family-level outcomes. Method: A stratified (by child age group) random sample of 538 families raising children with disabilities in Alberta, Canada took part. Participants completed the Family Life Survey, which incorporated child and family measures, and items measuring parent implementation of home-based therapy regimens. Results: Parents are more likely to implement therapeutic regimens when these are "enfolded" into other daily activities and routines. If parents have to "find a slot" in the daily routine to implement therapy, they will sacrifice personal leisure, participation in paid work, and time spent with other family members. Greater parent sacrifices/trade-offs was negatively associated with family well-being. Conclusion: As a general rule, children do well when their families do well, and families do well when they have the resources they need to juggle work and family and care demands. Recruiting parents as interventionists can tax family resources. Rehabilitation professionals must weigh up the pros and cons of parent-mediated intervention, and look to enfolding therapy into the everyday family routine.
Article
Full-text available
Background Social withdrawal in early childhood is a risk factor for later socioemotional difficulties. This study examined the joint effects of children's social withdrawal and mothers' and fathers' parenting styles on children's socioemotional development. Based on diatheses-stress, vantage sensitivity, and differential susceptibility models, socially withdrawn children were assumed to be more prone to parental influences than others.Methods Teachers rated 314 children on prosocial skills, and internalizing and externalizing behaviors at three points in time between grades 1–3. Mothers (n = 279) and fathers (n = 182) filled in questionnaires measuring their affection, and their behavioral and psychological control at the same points in time. Teacher reports on children's level of social withdrawal were obtained at the end of kindergarten.ResultsPanel analysis showed that particularly those children who showed signs of social withdrawal were vulnerable to the negative effects of low maternal affection in terms of externalizing behavior. Moreover, among these children, mothers' and fathers' psychological control predicted high levels of internalizing problem but, at the same time, mothers' psychological control predicted also a high level of prosocial behavior and low levels of externalizing problem.Conclusions The results supported the diathesis–stress model more than the differential susceptibility model. For example, socially withdrawn children were found to be particularly vulnerable to the negative effects of low maternal affection. Although maternal psychological control had positive effects on the prosocial skills of socially withdrawn children, and reduced the amount of externalizing problems, it was at the same time associated with an increase in their internalizing problems. In this way, socially withdrawn children seem to be at risk of pleasing their mothers at the cost of their own well-being.
Article
Full-text available
The current study is a randomized clinical trial evaluating the efficacy of Focused Playtime Intervention (FPI) in a sample of 70 children with Autism Spectrum Disorder. This parent-mediated intervention has previously been shown to significantly increase responsive parental communication (Siller et al. in J Autism Dev Disord 43:540-555, 2013a). The current analyses focus on children's attachment related outcomes. Results revealed that children who were randomly assigned to FPI showed bigger increases in attachment-related behaviors, compared to children assigned to the control condition. Significant treatment effects of FPI were found for both an observational measure of attachment-related behaviors elicited during a brief separation-reunion episode and a questionnaire measure evaluating parental perceptions of child attachment. The theoretical and clinical implications of these findings are discussed.
Article
Full-text available
Early intervention (EI) providers increasingly coach and collaborate with caregivers to strengthen and support caregiver–child interactions. The EI providers learning to coach other adults benefit from knowing what, exactly, they should do to support caregivers. This article serves two purposes. First, it proposes an operationally defined, theoretically based, and reliably used set of definitions (behaviors) that describe coaching strategies that providers can use to support caregiver learning. Second, it suggests possible applications of these definitions for EI providers, administrators, and researchers. We discuss underlying theories of adult learning and the process by which the definitions were developed. Preliminary evidence regarding the utility of these definitions is presented by using videotape data of provider coaching practices in home visits from three different studies. Descriptive data from these programs and home visits illustrate how the coaching definitions can be used to distinguish implementation differences and how they could be used to support professional development efforts for EI coaching and consultation.
Article
Full-text available
This study was carried out to examine the efficacy of a 12-week, low-intensity (1-hour/wk of therapist contact), parent-delivered intervention for toddlers at risk for autism spectrum disorders (ASD) aged 14 to 24 months and their families. A randomized controlled trial involving 98 children and families was carried out in three different sites investigating the efficacy of a parent delivery of the Early Start Denver Model (P-ESDM), which fosters parental use of a child-centered responsive interaction style that embeds many teaching opportunities into play, compared to community treatment as usual. Assessments were completed at baseline and 12 weeks later, immediately after the end of parent coaching sessions. There was no effect of group assignment on parent-child interaction characteristics or on any child outcomes. Both groups of parents improved interaction skills, and both groups of children demonstrated progress. Parents receiving P-ESDM demonstrated significantly stronger working alliances with their therapists than did the community group. Children in the community group received significantly more intervention hours than those in the P-ESDM group. For the group as a whole, both younger child age at the start of intervention and a greater number of intervention hours were positively related to the degree of improvement in children's behavior for most variables. Parent-implemented intervention studies for early ASD thus far have not demonstrated the large effects seen in intensive-treatment studies. Evidence that both younger age and more intervention hours positively affect developmental rates has implications for clinical practice, service delivery, and public policy.
Article
Full-text available
Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe deficits often present in children with ASD are associated with a plethora of difficulties in caregivers, including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders. In addition to significant financial strain and time pressures, high rates of divorce and lower overall family well-being highlight the burden that having a child with an ASD can place on families. These parent and family effects reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention. However, most interventions for ASD are evaluated only in terms of child outcomes, ignoring parent and family factors that may have an influence on both the immediate and long-term effects of therapy. It cannot be assumed that even significant improvements in the diagnosed child will ameliorate the parent and family distress already present, especially as the time and expense of intervention can add further family disruption. Thus, a new model of intervention evaluation is proposed, which incorporates these factors and better captures the transactional nature of these relationships.
Article
Full-text available
An integrative theoretical framework, developed for cross-disciplinary implementation and other behaviour change research, has been applied across a wide range of clinical situations. This study tests the validity of this framework. Validity was investigated by behavioural experts sorting 112 unique theoretical constructs using closed and open sort tasks. The extent of replication was tested by Discriminant Content Validation and Fuzzy Cluster Analysis. There was good support for a refinement of the framework comprising 14 domains of theoretical constructs (average silhouette value 0.29): 'Knowledge', 'Skills', 'Social/Professional Role and Identity', 'Beliefs about Capabilities', 'Optimism', 'Beliefs about Consequences', 'Reinforcement', 'Intentions', 'Goals', 'Memory, Attention and Decision Processes', 'Environmental Context and Resources', 'Social Influences', 'Emotions', and 'Behavioural Regulation'. The refined Theoretical Domains Framework has a strengthened empirical base and provides a method for theoretically assessing implementation problems, as well as professional and other health-related behaviours as a basis for intervention development.
Article
Full-text available
Improving the design and implementation of evidence-based practice depends on successful behaviour change interventions. This requires an appropriate method for characterising interventions and linking them to an analysis of the targeted behaviour. There exists a plethora of frameworks of behaviour change interventions, but it is not clear how well they serve this purpose. This paper evaluates these frameworks, and develops and evaluates a new framework aimed at overcoming their limitations. A systematic search of electronic databases and consultation with behaviour change experts were used to identify frameworks of behaviour change interventions. These were evaluated according to three criteria: comprehensiveness, coherence, and a clear link to an overarching model of behaviour. A new framework was developed to meet these criteria. The reliability with which it could be applied was examined in two domains of behaviour change: tobacco control and obesity. Nineteen frameworks were identified covering nine intervention functions and seven policy categories that could enable those interventions. None of the frameworks reviewed covered the full range of intervention functions or policies, and only a minority met the criteria of coherence or linkage to a model of behaviour. At the centre of a proposed new framework is a 'behaviour system' involving three essential conditions: capability, opportunity, and motivation (what we term the 'COM-B system'). This forms the hub of a 'behaviour change wheel' (BCW) around which are positioned the nine intervention functions aimed at addressing deficits in one or more of these conditions; around this are placed seven categories of policy that could enable those interventions to occur. The BCW was used reliably to characterise interventions within the English Department of Health's 2010 tobacco control strategy and the National Institute of Health and Clinical Excellence's guidance on reducing obesity. Interventions and policies to change behaviour can be usefully characterised by means of a BCW comprising: a 'behaviour system' at the hub, encircled by intervention functions and then by policy categories. Research is needed to establish how far the BCW can lead to more efficient design of effective interventions.
Article
Background: Social communication interventions benefit children with ASD in early childhood. However, the mechanisms behind such interventions have not been rigorously explored. This study examines the mechanism underlying a naturalistic developmental behavioral intervention, JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation), delivered by educators in the community. Specifically, the analyses focus on the mediating effect of joint engagement on children's initiations of joint attention (IJA) skills and whether IJA postintervention are associated with later gains in children's receptive and expressive language. Methods: One hundred seventy-nine children, age 2-5 years, were randomized to immediate JASPER treatment or waitlist (treatment as usual) control. Independent assessors blinded to time and treatment coded children's time jointly engaged and IJA during a 10-min teacher-child interaction at baseline, exit, and follow-up. Age-equivalent receptive and expressive language scores from the Mullen Scales of Early Learning were collected at baseline and follow-up. Mediation analyses with linear mixed models were used to explore the potential mediating effect of joint engagement on IJA. Results: Joint engagement significantly mediated 69% of the intervention effect on young children's IJA and IJA predicted improvements in standardized language scores. Conclusions: Small but sustained changes in child-initiated joint engagement improved IJA, a core challenge in children with ASD, which in turn led to improvements in language.
Article
Objective This study examines the impact of training therapists to deliver An Individualized Mental Health Intervention for autism spectrum disorder (ASD) (AIM HI) for children with autism spectrum disorder on caregiver outcomes and the mediating role of changes in caregiver outcomes on child outcomes. Method Data were drawn from a cluster randomized trial conducted in 29 publicly-funded mental health programs randomized to receive AIM HI training or usual care. Therapists were recruited from enrolled programs and child/caregiver participants enrolled from therapists’ caseloads. Participants included 202 caregivers of children aged 5 to 13 with autism spectrum disorder. Caregiver strain and sense of competence were assessed at baseline and 6 month post baseline. Child behaviors were assessed at baseline and 6, 12, and 18 months post baseline. Therapist delivery of evidence-based intervention strategies were assessed between baseline and 6 months. Results A significant training effect was observed for caregiver sense of competence, with AIM HI caregivers reporting significantly greater improvement relative to usual care. There was no significant training effect for caregiver strain. Observer-rated therapist delivery of evidence-based interventions strategies over 6 months mediated training effects for sense of competence at 6 months. Changes in sense of competence from baseline to 6 months was associated with reduced child challenging behaviors at 6 months and mediated child outcomes at 12 and 18 months. Conclusion Combined with research demonstrating effectiveness of therapist AIM HI training on child outcomes, this study provides further evidence of the positive impact of training community therapists in the AIM HI intervention.
Article
Background: Research trials of early intervention (EI) programs for children with autism spectrum disorder (ASD) generally demonstrate medium-to-large gains, on average, compared with "treatment as usual," in different developmental domains. Almost all children with ASD receive their treatment through community-based services, however, and studies suggest that evidence-based interventions rarely make their way into community practice. Understanding the effectiveness of community-based EI and factors associated with these effects is the first step in developing strategies for wide-scale implementation of effective EI. Methods: Studies of community-based EI for children with ASD were identified through a systematic search. Changes in cognitive, communication, social, and adaptive functioning from pre-treatment to post-treatment were assessed using standardized mean gain scores. Effect sizes were estimated using random effects models. Moderators of interest included type of community EI program, year of publication, intervention duration, and sample selection. Moderator effects were assessed using analysis of variance of mixed-effects models and meta-regression analyses. Results: Forty-six groups from 33 studies met inclusion criteria (1,713 participants, mean age 37.4 months, 81.1% male). There were small but statistically significant gains in each of the four domains. Hedges's g ranged from 0.21 for adaptive behavior to 0.32 for communication outcomes, after removing outliers and correcting for publication bias. EI programs associated with universities and hospitals were superior, on average, to other community EI programs for cognitive and adaptive behavior outcomes. Intervention duration was negatively associated with effect sizes for communication and adaptive behavior outcomes. Conclusions: These results indicate that there remains a large gap between outcomes observed in community settings and those reported in efficacy trials.
Article
This review describes the effects of intervention for young children with autism spectrum disorder (ASD) on parents. Like all children, children with ASD bring both negative and positive experiences for parents and families-from increased resource needs, to higher levels of parenting-related stress, to positive personal growth for family members. It is increasingly recognized that, although children with ASD are the primary targets of early ASD intervention, ASD intervention also impacts parents. From the time emerging developmental concerns begin to be identified, through the process of obtaining a diagnosis and initiating services, parents play a central role in addressing the needs of young children with ASD, including implementing and supporting early intervention. Parents experience the impact of intervention directly, through interaction with providers within the health care and educational systems. Parents also experience indirect impacts of ASD intervention due to accelerated developmental progress of children who are benefitting from services and when children make slower progress than expected or have challenging behaviors. Parental stress and psychological well-being are legitimate targets of intervention and compelling research objectives, needing no additional justification. However, parents are also the major contributors to family adaptive functioning-the activities families employ to support positive outcomes for children with ASD (e.g., family-orchestrated child experiences, parent-child interaction, child health and safety functions; Guralnick, 1997). A parent's ability to carry out adaptive functions is, in part, related to their levels of stress and psychological well-being. Thus, there is a transactional process in which parents are both impacted by and have an impact on ASD interventions for their child. Evaluating the effect of ASD intervention on parents is needed to develop new strategies for helping parents and children with ASD reach their full potential. This review will provide an overview of research on the impact of early ASD intervention on parents. Evidence regarding the impact of three types of intervention (i.e., early intensive behavioral intervention, parent-implemented intervention, and programs directly targeting parent stress) on parent well-being and family adaptive functioning will be reviewed. Potential moderators of the impact of ASD intervention on parents and family adaptive functioning will be discussed. We conclude that research on the impact of ASD intervention on parents of young children with ASD is a promising avenue for improving the lives of children with ASD and their families.
Article
There is growing interest in Family Navigation as an approach to improving access to care for children with autism spectrum disorder, yet little data exist on the implementation of Family Navigation. The aim of this study was to identify potential failures in implementing Family Navigation for children with autism spectrum disorder, using a failure modes and effects analysis. This mixed-methods study was set within a randomized controlled trial testing the effectiveness of Family Navigation in reducing the time from screening to diagnosis and treatment for autism spectrum disorder across three states. Using standard failure modes and effects analysis methodology, experts in Family Navigation for autism spectrum disorder (n = 9) rated potential failures in implementation on a 10-point scale in three categories: likelihood of the failure occurring, likelihood of not detecting the failure, and severity of failure. Ratings were then used to create a risk priority number for each failure. The failure modes and effects analysis detected five areas for potential "high priority" failures in implementation: (1) setting up community-based services, (2) initial family meeting, (3) training, (4) fidelity monitoring, and (5) attending testing appointments. Reasons for failure included families not receptive, scheduling, and insufficient training time. The process with the highest risk profile was "setting up community-based services." Failure in "attending testing appointment" was rated as the most severe potential failure. A number of potential failures in Family Navigation implementation-along with strategies for mitigation-were identified. These data can guide those working to implement Family Navigation for children with autism spectrum disorder.
Article
Family-centered parent coaching interventions in autism strive to encourage family engagement and support parent reflection and self-evaluation. This includes the parents’ capacity to: (1) carefully observe the child’s behavior; (2) reflect upon the child’s thoughts, motives, and feelings; (3) consider links between the child’s internal experiences and observable behavior; and (4) grapple with the complex interplay among the child’s experiences and behaviors, contextual factors, parenting strategies, as well as parental goals and emotions. The current study reports data from a clinical trial of Focused Playtime Intervention (FPI), a parent coaching intervention targeting responsive parental behaviors and child communication. Seventy children with autism between 2 and 6 years and their parents were randomly assigned to participate in FPI for 12 weeks or an active control intervention. The Insightfulness Assessment was administered and used (a) to classify parents’ baseline capacity for reflection and self-evaluation as either established (i.e., positively insightful) or emerging, and (b) to capture longitudinal change in the parents’ capacity between baseline, exit (~5 months after baseline), and follow up (~14 months after exit) using a dimensional composite subscale score. Results revealed a significant treatment effect of FPI on growth in the parents’ capacity for reflection and self-evaluation, conditional on the parents’ classification at baseline. That is, parents whose capacity for reflection and self-evaluation was classified as emerging at baseline (n = 42) showed higher rates of growth when assigned to FPI, compared to the control condition. A similar treatment effect was not found for parents whose baseline capacity for reflection and self-evaluation was classified as established (i.e., positively insightful). This is the first study to show that a family-centered parent coaching intervention effectively increases the capacity for reflection and self-evaluation in parents of young children with autism. This capacity may enable parents to adapt and implement intervention strategies flexibly across contexts, daily routines, and interactions.
Article
In order to develop deeper and better understandings of what constitutes effective educational practices, and to bridge the gap between research and practice, there is a need for a paradigm shift in autism educational research. The contribution of this paper is to examine the key methodological challenges that stand in the way of autism educational research impacting on practice. This research field is dominated by experimental research designs that evaluate the impact of ‘interventions’ that focus on developing the skills, knowledge, and understanding of pupils with autism. For educational research to have an impact on the lives of individuals with autism, their families, and the practitioners who work with them, movement towards a more balanced range of methodologies is needed. This needs to include methodologies that situate the knowledge base of practitioners on a par with the knowledge base of researchers, drawing on the evidence base from the classroom itself, and bringing in the perspectives and views of individuals with autism, their families, and the practitioners who work with them.
Article
Prevalence of autism spectrum disorders (ASD) suggest that one in 68 children is affected. With convincing evidence that parenting a child with ASD is associated with elevated distress and mental health problems, researchers have begun to investigate treatments that directly target parents' psychological well-being. We conducted a narrative review of studies that empirically tested the effects of interventions targeting improvements in the mental health of parents of children with ASD. Following a range of search strategies, a total of 13 studies, seven randomized controlled trials (RCTs) and six pre-post test designs, met inclusion criteria. We calculated and reported effect sizes for all RCTs. On average, treatment produced medium to large effect sizes with improvements in parenting stress and general health, and reductions in depression and anxiety. Interventions that appeared promising included: Stress Management and Relaxation Techniques, Expressive Writing, Mindfulness-Based Stress Reduction, and Acceptance and Commitment Therapy. However, only one study conducted a follow-up assessment > 3 months post intervention. Study populations primarily consisted of English-speaking mothers, ages 39 to 42 years. Conclusions were limited by small sample sizes, homogeneity of sample population, and reliance on self-report. Therefore, this body of research contains significant limitations in need of improvement for this field to move forward and benefit a sizable number of parents.
Article
Service use disparities have been noted to impede under-resourced families' ability to access high-quality services for their child with autism spectrum disorder (ASD). These disparities are particularly relevant for parent-mediated interventions and may suggest a lack of fit between these interventions and the needs of under-resourced community settings. This study used Roger's Diffusion of Innovations theory to guide community partnerships aimed at understanding the perceived compatibility, complexity, and relative advantage of using an evidence-based, parent-mediated intervention (Project ImPACT) within a Medicaid system. Three focus groups were conducted with 16 Medicaid-eligible parents, and three focus groups were conducted with 16 ASD providers operating within a Medicaid system. Across all groups, parents and providers reported general interest in using Project ImPACT. However, primary themes emerged regarding the need to (a) reduce the complexity of written materials; (b) allow for a more flexible program delivery; (c) ensure a strong parent-therapist alliance; (d) involve the extended family; and (e) help families practice the intervention within their preexisting routines. Results are discussed as they relate to the design and fit of evidence-based, parent-mediated interventions for under-resourced community settings.
Article
Although data from parent-implemented Naturalistic Developmental Behavioral Interventions have shown positive effects on decreasing core symptoms of autism, there has been limited examination of the effectiveness of Naturalistic Developmental Behavioral Interventions in community settings. In addition, parent perspectives of their involvement in parent-implemented early intervention programs have not been well studied. Using both qualitative and quantitative data to examine parent perspectives and the perceived feasibility of parent training by community providers, 13 families were followed as they received training in the Naturalistic Developmental Behavioral Intervention, Project ImPACT. Data indicate that parent training by community providers is feasible and well received, and parents find value in participating in intervention and perceive benefit for their children. Recommendations for adaptation of program elements and future research are discussed.
Article
The goal of this review is to advance the discussion regarding meaningful outcomes of early intervention for children with autism spectrum disorder. The rapid growth in the development and evaluation of early intervention approaches for autism spectrum disorder includes both therapist-driven and parent-mediated interventions. The majority of research on both approaches to early intervention focuses on promoting child outcomes (e.g. language acquisition) with less emphasis on family and parent outcomes (e.g. quality of life, self-efficacy). Given that parent buy-in is essential for parent-mediated interventions to be effective over time, increased attention to family outcomes that are of value to families and have the potential to be impacted positively by these interventions is needed to develop, disseminate, and sustain high-quality interventions in community settings. In this review, we draw from work on parent and family outcomes targeted in related fields (e.g. Part C early intervention, pediatric chronic illness, behavior management parent training) that we propose are particularly relevant for evaluating the impact of parent-mediated interventions in early intervention for autism spectrum disorder.
Article
Background: Relatively little research about autism early intervention has occurred in families of low socioeconomic status. Barriers to participation for under-resourced families (i.e., families with low incomes or limited education), pose a significant problem. The purpose of this pilot study was to apply empirically supported methods promoting participation of families with low-income and low-education levels to an established intervention for children with autism spectrum disorder (ASD). Method: Participant recruitment specifically targeted families whose income was equal to or below two times the federal poverty line and whose caregiver(s) had no more than two years of college attendance. An evidence-based intervention was modified to be more accessible to participating families. Adaptations focused on decreasing access barriers, decreasing attrition, and promoting positive change within families. Success of the program was measured quantitatively and qualitatively. Results: Twenty-seven families were referred to the project, 13 of which did not meet eligibility requirements. Eight families enrolled, maintained participation for the majority of the project and provided positive qualitative feedback of their experiences. Project and treatment attrition were calculated at 62% and 12.5%, respectively. Treatment attendance was high, but length of time to complete treatment was greatly influenced by the number of session cancellations. Conclusions: The exploratory project demonstrated that practical modifications to standard early intervention protocols can promote engagement in families with limited resources. Recommendations for programs seeking to implement interventions in under-resourced communities are discussed.
Article
Background: Behavioral interventions are commonplace in the treatment of autism spectrum disorders, yet relatively little is known about how and why these interventions work. This study tests the relationship between isolated core components of a packaged social communication intervention and the primary outcome, joint engagement, to better understand how the intervention is affecting change in individuals. Methods: A total of 86 toddlers and their parents were enrolled in the study and randomized to one of two treatments, the joint attention, symbolic play, engagement, and regulation (JASPER) parent-mediated intervention or a psychoeducational intervention. Measures regarding the parent's use of intervention strategies were collected before and after the 10-week intervention. Additional measures of child and parent joint engagement were also collected. Results: A significant effect of treatment was found for all four of the core strategies of the intervention, favoring a larger increase in the JASPER condition. A hierarchical linear regression revealed several individual predictors of joint engagement, including parent-rated buy-in, interventionist-rated parent involvement, and parental use of strategies. To complement the hierarchical analysis, we also tested the potential mediating effect the strategies may have on the relationship between treatment and joint engagement. Results showed that the strategy of mirrored pacing mediated the relationship between treatment and joint engagement in the positive direction. Conclusions: These results strongly suggest that the mirrored pacing strategy is an active ingredient of the JASPER treatment.
Article
This study compared effects of two parent-mediated interventions on joint engagement outcomes as augmentations of an early intervention program for toddlers with autism spectrum disorder (ASD). Participants included 86 toddlers (range 22-36 months) with ASD and their primary caregiver. Caregiver-child dyads were randomized to receive 10 weeks of hands-on parent training in a naturalistic, developmental behavioral intervention (joint attention, symbolic play, engagement and regulation-JASPER) or a parent-only psychoeducational intervention (PEI). Dose was controlled in terms of researcher-parent contact and early intervention services received by the child. Results yielded significant effects of the JASPER intervention on the primary outcome of joint engagement. The treatment effect was large (Cohen's f2 = .69) and maintained over the 6-month follow-up. JASPER effects were also found on secondary outcomes of play diversity, highest play level achieved, and generalization to the child's classroom for child-initiated joint engagement. The PEI intervention was found to be effective in reducing parenting stress associated with child characteristics. All secondary effects were generally small to moderate. These data highlight the benefit of a brief, targeted, parent-mediated intervention on child outcomes. Future studies may consider the combination of JASPER and PEI treatments for optimal parent and child outcomes. Trial registry no. NCT00999778. (PsycINFO Database Record (c) 2015 APA, all rights reserved).
Article
Notably absent from the intervention literature are parent training programs targeting school-aged children with autism who have limited communication skills (Tager-Flusberg and Kasari in Autism Res 6:468-478, 2013). Sixty-one children with autism age 5-8 with minimal spontaneous communication received a 6-month social communication intervention including parent training. Parent-child play interactions were coded for parents' strategy implementation and children's time jointly engaged (Adamson et al. in J Autism Dev Disord 39:84-96, 2009). Parents mastered an average of 70 % of the strategies. Further analyses indicated some gains in implementation occurred from mere observation of sessions, while the greatest gains occurred in the first month of active coaching and workshops. Children's joint engagement was associated with parents' implementation success across time demonstrating parents' implementation was relevant to children's social engagement.
Article
Background The PACT randomised-controlled trial evaluated a parent-mediated communication-focused treatment for children with autism, intended to reduce symptom severity as measured by a modified Autism Diagnostic Observation Schedule-Generic (ADOS-G) algorithm score. The therapy targeted parental behaviour, with no direct interaction between therapist and child. While nonsignificant group differences were found on ADOS-G score, significant group differences were found for both parent and child intermediate outcomes. This study aimed to better understand the mechanism by which the PACT treatment influenced changes in child behaviour though the targeted parent behaviour.Methods Mediation analysis was used to assess the direct and indirect effects of treatment via parent behaviour on child behaviour and via child behaviour on ADOS-G score. Alternative mediation was explored to study whether the treatment effect acted as hypothesised or via another plausible pathway. Mediation models typically assume no unobserved confounding between mediator and outcome and no measurement error in the mediator. We show how to better exploit the information often available within a trial to begin to address these issues, examining scope for instrumental variable and measurement error models.ResultsEstimates of mediation changed substantially when account was taken of the confounder effects of the baseline value of the mediator and of measurement error. Our best estimates that accounted for both suggested that the treatment effect on the ADOS-G score was very substantially mediated by parent synchrony and child initiations.Conclusions The results highlighted the value of repeated measurement of mediators during trials. The theoretical model underlying the PACT treatment was supported. However, the substantial fall-off in treatment effect highlighted both the need for additional data and for additional target behaviours for therapy.
Article
Educating parents of children with autism regarding how to act as treatment providers for their own children is now understood to be an essential component of successful treatment programs. Although most parent education programs have been successful overall in teaching parents to use specific techniques, the programs are often time consuming and costly, and some parents continue to have difficulty learning, then implementing, techniques at home. The current project assessed the addition of a parent education support group to an accelerated parent education program. Both groups of families received individualized parent education for 12 weeks. One group also attended a weekly parent education support group. Both parent mastery of the parent education techniques and the children's language skills were assessed before and after training. Results indicate that inclusion of a parent education support group in a parent education program may increase parent mastery of teaching techniques and success of accelerated programming and, in turn, increase children's language success. Limitations and implications of this clinical research study are discussed.
Article
Although the need for active parent involvement in Intensive Behavioral Intervention (IBI) has been emphasized by professionals in the field, little research has explored this involvement or what it entails. A parent self-report questionnaire and a similar therapist questionnaire were designed for this study, in which parent Involvement and five variables believed to influence Involvement were operationalized and measured. The independent variables included: parents’Self-efficacy; Knowledge of autism and IBI; Belief in IBI; Perception of Child Progress; and Stress. Forty-eight parents and 34 therapists completed questionnaires about parents’ involvement. Both similarities and discrepancies were noted between parent and therapist report. Parents’Self-efficacy, Knowledge, and Belief in IBI were significantly correlated with their Involvement. Furthermore, according to parent report, Self-efficacy accounted for almost half of the variance in predicting Involvement, even when controlling for child characteristics. Clinical implications are discussed.
Article
Background: Young children with autism spectrum disorders (ASD) have impairments in the areas of communication and social interaction and often display repetitive or non-compliant behaviour. This early pattern of difficulties is a challenge for parents. Therefore, approaches that help parents develop strategies for interaction and management of behaviour are an obvious route for early intervention in ASD. This review updates a Cochrane review first published in 2002 but is based on a new protocol. Objectives: To assess the effectiveness of parent-mediated early interventions in terms of the benefits for both children with ASD and their parents and to explore some potential moderators of treatment effect. Search methods: We searched a range of psychological, educational and biomedical databases including CENTRAL, MEDLINE, Embase, PsycINFO and ERIC in August 2012. As this is an update of a previous review, we limited the search to the period following the original searches in 2002. Bibliographies and reference lists of key articles were searched, field experts were contacted and key journals were handsearched. Selection criteria: We included only randomised controlled trials of early intervention for children with ASD. The interventions in the experimental condition were mediated by parents; the control conditions included no treatment, treatment as usual, waiting list, alternative child-centred intervention not mediated by parents, or alternative parent-mediated intervention of hypothesised lesser effect than the experimental condition. Data collection and analysis: Two review authors (HM and IPO) independently screened articles identified in the search and decided which articles should be retrieved in full. For each included study, two review authors (IPO and EH) extracted and recorded data, using a piloted data collection form. Two review authors (IPO and HM) assessed the risk of bias in each study. We performed data synthesis and analysis using The Cochrane Collaboration's Review Manager 5.1 software. Main results: The review includes 17 studies from six countries (USA, UK, Australia, Canada, Thailand and China), which recruited 919 children with ASD. Not all 17 studies could be compared directly or combined in meta-analyses due to differences in the theoretical basis underpinning interventions, the duration and intensity of interventions, and the outcome measurement tools used. Data from subsets of 10 studies that evaluated interventions to enhance parent interaction style and thereby facilitate children's communication were included in meta-analyses. The largest meta-analysis combined data from 316 participants in six studies and the smallest combined data from 55 participants in two studies. Findings from the remaining seven studies were reported narratively.High risk of bias was evident in the studies in relation to allocation concealment and incomplete outcome data; blinding of participants was not possible.Overall, we did not find statistical evidence of gains from parent-mediated approaches in most of the primary outcomes assessed (most aspects of language and communication - whether directly assessed or reported; frequency of child initiations in observed parent-child interaction; child adaptive behaviour; parents' stress), with findings largely inconclusive and inconsistent across studies. However, the evidence for positive change in patterns of parent-child interaction was strong and statistically significant (shared attention: standardised mean difference (SMD) 0.41; 95% confidence interval (CI) 0.14 to 0.68, P value < 0.05; parent synchrony: SMD 0.90; 95% CI 0.56 to 1.23, P value < 0.05). Furthermore, there is some evidence suggestive of improvement in child language comprehension, reported by parents (vocabulary comprehension: mean difference (MD 36.26; 95% CI 1.31 to 71.20, P value < 0.05). In addition, there was evidence suggesting a reduction in the severity of children's autism characteristics (SMD -0.30, 95% CI -0.52 to -0.08, P value < 0.05). However, this evidence of change in children's skills and difficulties as a consequence of parent-mediated intervention is uncertain, with small effect sizes and wide CIs, and the conclusions are likely to change with future publication of high-quality RCTs. Authors' conclusions: The review finds some evidence for the effectiveness of parent-mediated interventions, most particularly in proximal indicators within parent-child interaction, but also in more distal indicators of child language comprehension and reduction in autism severity. Evidence of whether such interventions may reduce parent stress is inconclusive. The review reinforces the need for attention to be given to early intervention service models that enable parents to contribute skilfully to the treatment of their child with autism. However, practitioners supporting parent-mediated intervention require to monitor levels of parent stress. The ability to draw conclusions from studies would be improved by researchers adopting a common set of outcome measures as the quality of the current evidence is low.
Article
In the first position paper of this chapter, Drew I. Westen argues, first, that patients treated in the laboratory have not been adequately representative of patients treated in the community, and second, that treatments tested in the laboratory have not been adequately representative of treatments as practiced in the community. The Evidence-Based Practice (EBP) movement (and the variant of it that emphasizes Empirically-Supported Treatments [ESTs]) has led to dramatic changes in practice and training, and has dominated the psychotherapy agenda since the mid-1990s. There is no doubt that we have made many steps forward in the development of effective treatments, particularly for anxiety disorders. What we do not know is how many steps we have taken backward in psychotherapy practice and training for the myriad patients who present for treatment of multiple, often less focal concerns. If researchers want clinicians to take their research seriously, they will need to take clinicians seriously. We have learned enough about internal validity. Now let's learn something about psychotherapy. In the second position paper of this chapter, Shannon Wiltsey Stirman and Robert J. DeRubeis review some recent data on comorbidity among research participants, as well as the results of studies that compare treatment-seeking outpatients to patients in randomized clinical trials (RCTs). Stirman and DeRubeis then consider other issues related to the external validity of clinical trials. The differences that exist between patients in research settings and those in clinical practice are still not well characterized, but the data thus far suggest that they are not nearly as great as some have assumed (see Seligman, 1995), particularly as RCTs have evolved to address the shortcomings of earlier studies. The differences between research and practice are not substantial enough to warrant a dismissal of the applications of RCT results to clinical practice. Although differences certainly exist between some aspects of RCTs and routine clinical practice, some of these differences have been overstated. This conclusion can be drawn in part on the basis of the findings of recent studies that suggest patients who participate in psychotherapy outcome research are more representative of patients who receive treatment in clinical practice than previously assumed. Clinical researchers and practicing clinicians should continue to work together to bridge all the gaps between research and practice, an aim that requires persistence and adjustment to current methods, not the abandonment of the scientific methods that have contributed greatly to practical knowledge thus far. The chapter concludes with a dialogue among the contributors in which they emphasize their points of agreement and disagreement. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
Parents (N = 21) of children with autism spectrum disorders responded to a survey on adherence to skills instruction and problem behavior management strategies they had previously been observed to master in a standardized training curriculum based on the principles of applied behavior analysis. Survey items were guided by existing models of and research in treatment adherence. Parents reported adherence below observed mastery criteria in five of six skill areas. Three independent variables indexing caregiver perception were significantly correlated with reported adherence: perceived effectiveness as a behavior change agent, confidence in the intervention to produce meaningful change, and acceptance of child in family and community. Perceived confidence significantly predicted adherence in a regression model (p < .05). Implications of caregiver perception in explanatory frameworks for adherence are discussed, and next steps in the measurement and study of treatment adherence in behavior analysis are proposed.