Examining variability in Naturalistic Developmental Behavioral Intervention strategy use in caregivers of children with autism spectrum disorders.

BACKGROUND: Naturalistic Developmental Behavioral Interventions (NDBIs) for young children with autism spectrum disorder commonly involve caregiver-mediated approaches. However, to date, there is limited research on how caregivers' skills change, and, in turn, impact child outcomes. METHODS: We evaluated the NDBI strategy use of 191 caregivers prior to participation in NDBIs (or control groups) across multiple randomized controlled trials, using the Measure of NDBI Strategy Implementation, Caregiver Change (MONSI-CC). Clustering analyses were used to examine caregiver variability in NDBI strategy use at intervention entry. Generalized Linear Mixed Models were used to examine changes in caregiver strategy use over the course of intervention and its impact on changes in children's social communication. RESULTS: Using clustering analysis, we found that caregivers' baseline skills fit four profiles: limited, emerging, variable, and consistent/high, with few demographic factors distinguishing these groups. Caregivers starting with limited or emerging skills improved in their strategy use with intervention. Caregivers starting with more skills (consistent/high or variable) maintained higher skills over intervention. Children of caregivers in these groups who received target NDBIs improved in their social communication skills. CONCLUSIONS: Results suggested that caregiver skills improve through participation in NDBIs and may directly contribute to their children's outcomes, although more research on mediating factors is needed. Individualized approaches for caregivers and their children starting with differing skill profiles at intervention entry may be warranted.

Treatment mechanism of the WHO caregiver skills training intervention for autism delivered in community settings.

This study examined the mechanism of effect of the WHO Caregiver Skills Training (CST) through secondary analysis of a pilot RCT conducted in community settings. Participants were 86 caregivers (77% mothers) of children with ASD (78% male, mean age: 44.8 months) randomized to CST (n = 43) or treatment as usual (n = 43). The primary outcomes, measured at baseline (t1), immediately post-intervention (t2), and 3 months post-intervention (t3), were derived from the coding of caregiver-child free play interactions with the Brief Observation of Social-Communication Change (BOSCC) and the Joint Engagement Rating Inventory scale (JERI). At t3 positive treatment main effects had been observed for caregiver skills supportive of the interaction and for flow of the interaction (JERI), albeit only non-significant changes in the expected direction for child outcomes: autism phenotypic behaviors (BOSCC), joint engagement and availability to interact (JERI). This study tested the theory of change of CST, hypothesizing that the intervention would lead to an improvement on all child and dyad outcomes through an increase in the caregiver skills supportive of the interaction. Serial mediation analyses revealed that the effect of the intervention was significantly influenced by change in caregiver skills. Participation in the intervention led to notable increases in caregiver skills at t2 and t3, which subsequently contributed to improvements at t3 in flow of the interaction, autism phenotypic behavior, joint engagement, and availability to interact. We confirmed our a priori hypothesis showing that change in caregiver skills significantly mediated the effect of treatment on the dyad primary outcome, as well as on the other child outcomes that had shown non-significant changes in the expected direction. Implications for intervention design and policy making in the context of public health services are discussed.

Feasibility and acceptability of a caregiver-mediated early support program, delivered online, for infants at elevated familial likelihood for autism: A feasibility randomized controlled trial.

Preliminary evidence indicates potential benefit of providing caregiver-mediated intervention, prior to diagnosis, for infants at elevated familial likelihood for autism and related developmental delays including language delay (EL-A). However, delivering such interventions online and in low-resource settings like India has not been reported. This study aimed to evaluate the feasibility and acceptability of delivering a novel manualized caregiver-mediated early support program, the "LiL' STEPS," online in India, for EL-A infants. LiL' STEPS stands for Language development & Intervention Lab's (LiL') Supporting Early social-communication and language by Promoting caregiver Sensitive responsiveness (STEPS). The program comprised 14 sessions with a focus on social-communication and language, conducted over 12-weeks using demonstration and video feedback. Families of 36 EL-A infants aged 9 to 15-months participated in this feasibility randomized controlled trial (RCT). Families were randomized in a 2:1 ratio (n = 24 LiL' STEPS and n = 12 care as usual groups). Information on feasibility and acceptability was collated following a mixed methods approach from caregiver interviews, fidelity forms, session notes, and study register. Findings indicated the LiL' STEPS study trial as feasible and acceptable with recruitment rate of 4 per month, 100% willingness for randomization, 8.3% attrition, and 3.03% loss of blinding. Interventionist and caregiver fidelity was maintained above 80%. Despite challenges like interruptions during sessions, 100% families found the program acceptable and satisfactory, 86% said they would recommend the program to others, and 71% preferred online modality. Caregivers' perspectives on beneficial components and experience attending the program have been described. Accordingly, recommendations for future definitive RCTs have been presented.

Effectiveness of caregiver-mediated intervention: a pilot study for children with neurodevelopmental disorders.

OBJECTIVES: Caregiver-mediated intervention (CMI), based on parent skills training, is a family-mediated intervention model for children with neurodevelopmental disorders, in particular autism spectrum disorder. This study aimed to evaluate the effectiveness of CMI. METHODS: Thirty-three children (aged 22-69 months from our department) and their caregivers participated in a two-week training course of ten 90-minute lessons. Caregivers were encouraged to try their best to apply intervention skills in both home routines and play routines to encourage the development of cognition, motion, social adaptability, and behavior of children. Demographic information, video-recorded data, and diagnostic scales were collected at two key time points: baseline and post-training (PT - within six months). RESULTS: Three aspects were assessed - primary variables, secondary variables, and correlation analyses. Results showed an improvement in PT in (1) Adult/Child Interaction Fidelity Rating (P < 0.01) and (2) adaptability of Gesell Developmental Scale and stereotyped behaviors and limited interests of Autism Diagnostic Observation Schedule (P < 0.05, P < 0.01). Moreover, a negative correlation occurred between caregiver skill improvement and parent education (P < 0.05), but without correlations with other demographics. CONCLUSIONS: As an efficacious family intervention for both children and their caregivers, CMI is worth being generalized widely.

Telehealth-delivered caregiver training for autism: Recent innovations.

Providing treatment to children with autism is a global health priority, and research demonstrates that caregivers can be trained in techniques to promote their child's social interaction, communication, play, positive behavior and skills. These caregiver-mediated interventions have been shown to promote a number of positive outcomes in children with autism, as well as their caregivers. When provided by telehealth, data indicate that caregiver training is acceptable and feasible, and associated with similar positive outcomes as live face-to-face training. Telehealth innovations, which have accelerated during the COVID-19 era, have demonstrated advantages over in-person delivery of services in terms of cost effectiveness and increased accessibility, however, more research is needed on feasibility, acceptability and effectiveness for different populations in different contexts. This brief review will highlight recent caregiver skills training interventions for autism that have been successfully adapted or designed for telehealth delivery. Telehealth interventions that are scalable, adaptable, caregiver-mediated, open-access, and delivered as part of a stepped care model, have the potential to address the global treatment gap for families of children with autism and other neurodevelopmental disabilities. Considerations relevant to the global scale-up of caregiver-mediated interventions will also be discussed.

Supporting Caregivers Remotely During a Pandemic: Comparison of WHO Caregiver Skills Training Delivered Online Versus in Person in Public Health Settings in Italy.

Feasibility, acceptability and effectiveness data of a virtual adaptation of the WHO Caregiver Skills Training (CST; n = 25) were compared with those of a pilot RCT of CST delivered in person (n = 43) against treatment as usual (TAU; n = 43). Virtual CST was delivered with high levels of integrity, but received lower ratings in some caregiver- and facilitator-rated acceptability and feasibility dimensions. Qualitative analysis identified both benefits (flexibility, convenience, clinical usefulness) and challenges, (technological issues, distraction from family members, emotional distance). Virtual and in-person CST improved significantly more on caregiver competence than TAU; there were no other significant effects. Potential for use of virtual CST as a clinical response in contexts where in-person delivery is not possible is discussed.

A Technology-Enabled Adaptation of Face-to-Face Caregiver-Mediated JASPER Intervention: Preliminary Examination of Video Conferenced Caregiver Coaching.

Family-centered practices that involve direct participation of caregivers as part of intervention is critical to effective early intervention. However, regularly scheduled, in person service delivery is not always possible in remote communities, prompting a need for adaptations to the delivery of services, such as the use of live video conferencing to coach caregivers in strategies to promote their children's development. In this study, caregivers and their children ages 2-9 with autism who were living in rural and remote Canadian communities were included. A concurrent multiple baseline design across participants was applied to examine the effects of live video conference caregiver coaching on children's time jointly engaged with caregivers and caregivers' intervention strategy implementation. Results indicated that all children demonstrated greater time jointly engaged and caregivers demonstrated greater use of strategies in comparison to baseline. The results of this study offer preliminary evidence of the effectiveness of real time video conference coaching for caregivers engaging their children with ASD in play.

Parent-Mediated Interventions for Children and Adolescents With Autism Spectrum Disorders: A Systematic Review and Meta-Analysis.

There has been increasing interest in parent-mediated interventions (PMIs) for children with autism spectrum disorders (ASDs). The objective of this systematic review and meta-analysis was to examine the effect of PMIs compared to no PMI for children with ASD aged 2-17 years. The primary outcome was adaptive functioning rated by a parent or clinician. The secondary outcomes were long-term adaptive functioning rated by the parents, adverse events, core symptoms of ASD, disruptive behavior, parental well-being, quality of life of the child rated by the parents and anxiety. The MEDLINE, PsycInfo, Embase, and CINAHL databases were searched in March 2020. The Cochrane Risk of Bias Tool was used to rate the individual studies, and the certainty in the evidence was evaluated using GRADE. We identified 30 relevant randomized controlled trials (RCTs), including 1,934 participants. A clinically relevant effect of PMIs on parent-rated adaptive functioning was found with a low certainty of evidence [Standard mean difference (SMD): 0.28 (95% CI: -0.01, 0.57)] on Vineland Adaptive Behavior Scales (VABS), whereas no clinically relevant effect was seen for clinician-rated functional level, with a very low certainty of evidence [SMD on Clinical Global Impressions (CGI)-severity scale: SMD -0.45 [95% CI: -0.87, -0.03)]. PMIs may slightly improve clinician-rated autism core symptoms [SMD: -0.35 (95% CI: -0.71, 0.02)]. Additionally, no effect of PMIs on parent-rated core symptoms of ASD, parental well-being or adverse effects was identified, all with a low certainty of evidence. There was a moderate certainty of evidence for a clinically relevant effect on disruptive behavior [SMD: 0.55 (95% Cl: 0.36, 0.74)]. The certainty in the evidence was downgraded due to serious risk of bias, lack of blinding, and serious risk of imprecision due to few participants included in meta-analyses. The present findings suggest that clinicians may consider introducing PMIs to children with ASD, but more high-quality RCTs are needed because the effects are not well-established, and the results are likely to change with future studies. The protocol for the systematic review is registered at the Danish Health Authority website (www.sst.dk).

Coaching via Telehealth: Caregiver-Mediated Interventions for Young Children on the Waitlist for an Autism Diagnosis Using Single-Case Design.

Years can elapse between parental suspicion of a developmental delay and a diagnostic assessment, ultimately delaying access to medically necessary, autism-specific intervention. Using a single-case, concurrent multiple baseline design, autism spectrum disorder symptomology (i.e., higher-order restrictive and repetitive behaviors and interests; higher-order RRBIs) was targeted in toddlers (21-35 months) waiting for a diagnostic appointment. Caregivers were coached via telehealth to mediate early intervention to decrease interfering, inflexible higher-order RRBIs during play using four evidence-based applied behavior analytic strategies: modeling, prompting, differential reinforcement of appropriate behaviors, and response interruption and redirection. Six mother-child dyads were recruited from pediatrician offices and early intervention service districts in the United States. All families were considered under-served, under-resourced, or living in rural locations. A visual analysis of the data combined with Tau-U revealed a strong basic effect between the intervention package and parent strategy use and child flexible and inflexible behavior. Findings were consistent across participants with one exception demonstrating a moderate effect for flexible behaviors yet a strong effect for inflexible behaviors. Standardized mean difference was beyond zero for all participants. Implications for science and practice include support for early intervention of higher-order RRBIs for young children with and at risk for ASD.

The relationship between treatment attendance, adherence, and outcome in a caregiver-mediated intervention for low-resourced families of young children with autism spectrum disorder.

Rates of participation in intervention research have not been extensively studied within autism spectrum disorder. Such research is important given the benefit of early intervention on long-term prognosis for children with autism spectrum disorder. The goals of this study were to examine how family demographic factors predicted treatment attendance and adherence in a caregiver-mediated randomized controlled trial targeting core deficits of autism spectrum disorder, and whether treatment attendance and adherence predicted outcome. In all, 147 caregiver-child dyads from a low-resourced population were randomized to in-home caregiver-mediated module or group-based caregiver education module treatment. Treatment attendance, adherence, and outcome (time spent in joint engagement) were the primary outcome variables. The majority of families who entered treatment (N = 87) maintained good attendance. Attendance was significantly predicted by socioeconomic status, site, and treatment condition. Families in caregiver-mediated module reported lower levels of treatment adherence, which was significantly predicted by site, condition, caregiver stress, and child nonverbal intelligence quotient. Dyads in caregiver-mediated module had significantly longer interactions of joint engagement, which was significantly predicted by an interaction between treatment attendance and condition. Overall, the results from this study stress the importance of considering demographic variables in research design when considering barriers to treatment attendance and adherence.

Efficacy of caregiver-mediated joint engagement intervention for young children with autism spectrum disorders.

Joint attention intervention for children with autism spectrum disorders was focused on improving joint engagement and joint attention skills. The purpose of this study was to develop a caregiver-mediated joint engagement intervention program combined with body movement play to investigate the effects of joint engagement/joint attention skills in young children with autism spectrum disorders. A quasi-experimental research design was conducted. A total of 34 young children with autism spectrum disorders aged 2-4 years were separated into an intervention and a control group. The program consisted of 20 sessions, 60 min per session, twice a week, for the target child and his or her parent. The results indicated that child-initiated supportive and coordinated joint engagement was greater for the intervention group compared with the control group at 3-month follow-up. This demonstrated that our joint engagement intervention could enhance joint engagement, especially coordinated joint engagement for young children with autism spectrum disorders. The limitations of the study and future directions were discussed.