Quantifying Caregiver Change Across Early Autism Interventions Using the Measure of NDBI Strategy Implementation: Caregiver Change (MONSI-CC).
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SUBMITTER: Vibert BA
PROVIDER: S-EPMC7103564 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Background:A lack of specialists, and insufficient infrastructure and funding to scale early interventions for autism spectrum disorder (ASD) characterize low-resource settings. Integration of early intervention methods that utilize non-specialists, and involve caregivers, into existing systems of care, offers the best hope to address such unmet needs. In South Africa, a caregiver coaching intervention, informed by principles of the Early Start Denver Model (ESDM) was adapted for delivery by non-specialist Early Childhood Development (ECD) practitioners. This study explored perceived barriers and facilitators to sustainable implementation of this approach. Methods:Nine stakeholders including caregivers, ECD practitioners, ECD school supervisors, and certified South African ESDM therapists involved in intervention implementation were purposively sampled, and individual in-depth interviews were conducted. Interviews were transcribed verbatim and thematically analyzed. Results:Implementation facilitators included: ECD practitioner ASD knowledge and ongoing supervision; a positive coaching experience; and clear illustration of intervention concepts. Implementation barriers included: complexity of some intervention and coaching concepts; logistical challenges such as time constraints and internet access; and mismatch between video content and the South African context. Facilitators to sustain the intervention included perceived positive child and caregiver outcomes; and ongoing supervision. Barriers to sustain the intervention included socio-economic contextual factors. Conclusions:In spite of the potential for positive child and caregiver outcomes from caregiver coaching, broader contextual and system-level issues such as poverty, the need for ongoing supervision, and access to local coaching materials in South African languages, may challenge sustainable implementation. Findings from this study will inform tailoring of the intervention training and supervision approach for next step evaluation.
| S-EPMC6746419 | biostudies-literature
Project description:ObjectiveRisky behaviors such as smoking, alcohol abuse, physical inactivity, and poor diet are detrimental to health, costly, and often co-occur. Greater efforts are being targeted at changing multiple risk behaviors to more comprehensively address the health needs of individuals and populations. With increased interest in multiple risk factor interventions, the field will need ways to conceptualize the issue of overall behavior change.MethodAnalyzing data from over 8000 participants in four multibehavioral interventions, we present five different methods for quantifying and reporting changes in multiple risk behaviors.ResultsThe methods are: (a) the traditional approach of reporting changes in individual risk behaviors; (b) creating a combined statistical index of overall behavior change, standardizing scores across behaviors on different metrics; (c) using a behavioral index; (d) calculating an overall impact factor; and (e) using overarching outcome measures such as quality of life, related biometrics, or cost outcomes. We discuss the methods' interpretations, strengths, and limitations.ConclusionGiven the lack of consensus in the field on how to examine change in multiple risk behaviors, we recommend researchers employ and compare multiple methods in their publications. A dialogue is needed to work toward developing a consensus for optimal ways of conceptualizing and reporting changes in multibehavioral interventions.
| S-EPMC2288581 | biostudies-literature
Project description:The Autism Impact Measure (AIM) was designed specifically for treatment-outcome assessment in children with ASD, focusing on treatment-relevant aspects of symptom presentation and efficient detection of short-term improvement. The AIM demonstrated strong reliability and validity in initial psychometric studies. The current study evaluated the AIM's sensitivity to change across well-established treatments. The sample included 471 children with ASD (ages 2-14) participating in one of six treatments. The AIM was administered at baseline and 6-week intervals and a battery of domain-specific concurrent measures was also administered. A longitudinal repeated measures design examined the degree to which: (a) AIM domain scores changed over time in response to treatment and (b) change in AIM domains was associated with change in measures of similar constructs. Results across growth curve models indicated that AIM domains are sensitive to change in symptoms across treatment. Across all models, symptoms decreased over time, with some deceleration in rate of improvement. For all AIM domains except Repetitive Behavior, symptoms improved as a function of treatment group. Correlations of change between AIM and other measures varied across domains (from 0.01-0.43 across measures). This was the first large-scale study to systematically evaluate sensitivity to change in a measure of core ASD symptoms. The results provide support for the AIM's ability to detect short-term improvement across symptom domains and indicate that AIM domains are sensitive to change overall and as a function of different treatment conditions. The brief repeated assessment window also highlights the AIM's utility for detecting improvements across short-term treatments. Autism Res 2020, 13: 1867-1879. © 2020 International Society for Autism Research and Wiley Periodicals LLC LAY SUMMARY: Good measures are important for assessing outcomes in children with autism. However, there are few tools for tracking short-term changes in autism symptoms. This study tested a new measure, the Autism Impact Measure (AIM), in a large group of children with autism. The results showed that the AIM appears to be a valid and accurate tool for measuring autism symptoms. The AIM may be a helpful tool for researchers and clinicians interested in tracking short-term improvements in autism symptoms.
| S-EPMC7722077 | biostudies-literature
Project description:BackgroundWhile early autism intervention can significantly improve outcomes, gaps in implementation exist globally. These gaps are clearest in Africa, where forty percent of the world's children will live by 2050. Task-sharing early intervention to non-specialists is a key implementation strategy, given the lack of specialists in Africa. Naturalistic Developmental Behavioral Interventions (NDBI) are a class of early autism intervention that can be delivered by caregivers. As a foundational step to address the early autism intervention gap, we adapted a non-specialist delivered caregiver coaching NDBI for the South African context, and pre-piloted this cascaded task-sharing approach in an existing system of care.ObjectivesFirst, we will test the effectiveness of the caregiver coaching NDBI compared to usual care. Second, we will describe coaching implementation factors within the Western Cape Department of Education in South Africa.MethodsThis is a type 1 effectiveness-implementation hybrid design; assessor-blinded, group randomized controlled trial. Participants include 150 autistic children (18-72 months) and their caregivers who live in Cape Town, South Africa, and those involved in intervention implementation. Early Childhood Development practitioners, employed by the Department of Education, will deliver 12, one hour, coaching sessions to the intervention group. The control group will receive usual care. Distal co-primary outcomes include the Communication Domain Standard Score (Vineland Adaptive Behavior Scales, Third Edition) and the Language and Communication Developmental Quotient (Griffiths Scales of Child Development, Third Edition). Proximal secondary outcome include caregiver strategies measured by the sum of five items from the Joint Engagement Rating Inventory. We will describe key implementation determinants.ResultsParticipant enrolment started in April 2023. Estimated primary completion date is March 2027.ConclusionThe ACACIA trial will determine whether a cascaded task-sharing intervention delivered in an educational setting leads to meaningful improvements in communication abilities of autistic children, and identify implementation barriers and facilitators.
| S-EPMC10516098 | biostudies-literature
Project description:BackgroundWhile early autism intervention can significantly improve outcomes, gaps in implementation exist globally. These gaps are clearest in Africa, where forty percent of the world's children will live by 2050. Task-sharing early intervention to non-specialists is a key implementation strategy, given the lack of specialists in Africa. Naturalistic Developmental Behavioral Interventions (NDBI) are a class of early autism intervention that can be delivered by caregivers. As a foundational step to address the early autism intervention gap, we adapted a non-specialist delivered caregiver coaching NDBI for the South African context, and pre-piloted this cascaded task-sharing approach in an existing system of care.ObjectivesFirst, we will test the effectiveness of the caregiver coaching NDBI compared to usual care. Second, we will describe coaching implementation factors within the Western Cape Department of Education in South Africa.MethodsThis is a type 1 effectiveness-implementation hybrid design; assessor-blinded, group randomized controlled trial. Participants include 150 autistic children (18-72 months) and their caregivers who live in Cape Town, South Africa, and those involved in intervention implementation. Early Childhood Development practitioners, employed by the Department of Education, will deliver 12, one hour, coaching sessions to the intervention group. The control group will receive usual care. Distal co-primary outcomes include the Communication Domain Standard Score (Vineland Adaptive Behavior Scales, Third Edition) and the Language and Communication Developmental Quotient (Griffiths Scales of Child Development, Third Edition). Proximal secondary outcome include caregiver strategies measured by the sum of five items from the Joint Engagement Rating Inventory. We will describe key implementation determinants.ResultsParticipant enrolment started in April 2023. Estimated primary completion date is March 2027.ConclusionThe ACACIA trial will determine whether a cascaded task-sharing intervention delivered in an educational setting leads to meaningful improvements in communication abilities of autistic children, and identify implementation barriers and facilitators.Trial registrationNCT05551728 in Clinical Trial Registry (https://clinicaltrials.gov).
| S-EPMC10786379 | biostudies-literature
Project description:Structural magnetic resonance imaging (MRI) scans at high spatial resolution can detect potential foci of early brain dysmaturation in children with autism spectrum disorders (ASD). In addition, comparison between MRI and behavior measures over time can identify patterns of brain change accompanying specific outcomes. We report structural MRI data from two time points for a total of 84 scans in children with ASD and 30 scans in typical controls (mean age time one = 4.1 years, mean age at time two = 6.6 years). Surface-based cortical morphometry and linear mixed effects models were used to link changes in cortical anatomy to both diagnostic status and individual differences in changes in language and autism severity. Compared with controls, children with ASD showed accelerated gray matter volume gain with age, which was driven by a lack of typical age-related cortical thickness (CT) decrease within 10 cortical regions involved in language, social cognition, and behavioral control. Greater expressive communication gains with age in children with ASD were associated with greater CT gains in a set of right hemisphere homologues to dominant language cortices, potentially identifying a compensatory system for closer translational study. Hum Brain Mapp 37:2616-2629, 2016. © 2016 Wiley Periodicals, Inc.
| S-EPMC4905793 | biostudies-literature
Project description:AimsThe purpose of this article is to describe the psychometric development of the Hemophilia Caregiver Impact measure.MethodsQualitative interviews (n = 22) and a cross-sectional web-based study (n = 458) were implemented with caregivers of people with hemophilia. Classical test theory and item response theory analyses were implemented to evaluate the psychometric characteristics of the measure.ResultsThe study sample had a mean age of 39 and a median level of college education. It was predominantly female (88%), and had an average of two children. 85% of this study sample had at least one child with hemophilia. The final 36-item Hemophilia Caregiver Impact measure is composed of seven subscales assessing relevant negative aspects of caregiver impact (Burden Summary) as well as one subscale reflecting a positive aspect of caregiver impact (Positive Emotions). These two summary scores are orthogonal and can be used together in analyses examining negative and positive aspects of caregiver impact. The items included within each subscale reflect a unidimensional construct, demonstrate good item information and trace lines, and lack of local dependence. The resulting subscales demonstrate high reliability, and good construct validity. They show moderate incremental and discriminant validity.ConclusionsThe Hemophilia Caregiver Impact measure is a useful new tool for clinical research on hemophilia. In addition to having eight relevant subscales, the measure can also be summarized with two scores. This versatility can be useful in analyzing studies with very small samples, which is to be expected when dealing with a rare condition like hemophilia.
| S-EPMC5548839 | biostudies-literature
Project description:BackgroundValid and reliable measurement of implementation strategies is essential to advancing implementation science; however, this area lags behind the measurement of implementation outcomes and determinants. Clinical supervision is a promising and highly feasible implementation strategy in behavioral healthcare for which pragmatic measures are lacking. This research aimed to develop and psychometrically evaluate a pragmatic measure of clinical supervision conceptualized in terms of two broadly applicable, discrete clinical supervision techniques shown to improve providers' implementation of evidence-based psychosocial interventions-(1) audit and feedback and (2) active learning.MethodsItems were generated based on a systematic review of the literature and administered to a sample of 154 outpatient mental health clinicians serving youth and 181 community-based mental health providers serving adults. Scores were evaluated for evidence of reliability, structural validity, construct-related validity, and measurement invariance across the two samples.ResultsIn sample 1, confirmatory factor analysis (CFA) supported the hypothesized two-factor structure of scores on the Evidence-Based Clinical Supervision Strategies (EBCSS) scale (χ2=5.89, df=4, p=0.208; RMSEA=0.055, CFI=0.988, SRMR=0.033). In sample 2, CFA replicated the EBCSS factor structure and provided discriminant validity evidence relative to an established supervisory alliance measure (χ2=36.12, df=30, p=0.204; RMSEA=0.034; CFI=0.990; SRMR=0.031). Construct-related validity evidence was provided by theoretically concordant associations between EBCSS subscale scores and agency climate for evidence-based practice implementation in sample 1 (d= .47 and .55) as well as measures of the supervision process in sample 2. Multiple group CFA supported the configural, metric, and partial scalar invariance of scores on the EBCSS across the two samples.ConclusionsScores on the EBCSS provide a valid basis for inferences regarding the extent to which behavioral health providers experience audit and feedback and active learning as part of their clinical supervision in both clinic- and community-based behavioral health settings.Trial registrationClinicalTrials.gov NCT04096274 . Registered on 19 September 2019.
| S-EPMC10080877 | biostudies-literature
Project description:Objectivenformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice.MethodsWe searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction.ResultsThe search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one-third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered.ConclusionsCaregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation.
| S-EPMC6594143 | biostudies-literature
Project description:Traditional longitudinal modeling approaches require normally distributed data and do not account for sample heterogeneity. Parenting stress, in particular, can be difficult to model across time without transforming the data as it is usually high for caregivers of children with ASD. This study used novel linear quantile mixed models (LQMMs) to model non-normal parent stress scores across two caregiver-mediated interventions involving toddlers with ASD. The sample included 86 caregiver-child dyads who were randomized to either a parent-only psychoeducational intervention or hands-on parent training in a naturalistic developmental intervention. Child and parent-related domains of the Parenting Stress Index (PSI) were the primary outcomes in this study. The PSI was collected at entry, 10-week exit, 3-month follow-up, and 6-month follow-up periods. Separate LQMMs were used to model five specific quantiles ( τ=0.1,0.25,0.5,0.75,and0.9) of the two PSI domains across the complete intervention timeline. These five quantiles effectively modeled the entire conditional distribution of parenting stress scores. The LQMMs indicated that child-related parenting stress decreased across all quantiles within both interventions, with no difference in the rate of parenting stress change between the intervention groups. For parent-related parenting stress, the effect of intervention depended on the group's stress level; some parents increased their perceived stress within the hands-on intervention at the 3-month follow-up. Overall, this study demonstrated that the use of LQMMs yielded additional information, beyond traditional longitudinal models, regarding the relationship between parenting stress within two caregiver-mediated intervention protocols. This study also discussed the methodological contributions and potential future applications of LQMMs. LAY SUMMARY: This study used a newer longitudinal modeling technique to examine how parenting stress changed across two caregiver-mediated interventions for toddlers with ASD. Results showed that certain parents in the JASPER condition might require additional support as they exit the study and enter into their first follow-up period. It was also determined that this new modeling technique could be a valuable tool to analyze highly variable data often present in ASD intervention studies.
| S-EPMC8821158 | biostudies-literature