Parent-mediated Intervention Research Articles

Food Selectivity in Children with Autism: Guidelines for Assessment and Clinical Interventions

Autisms Spectrum Disorders (ASD) are characterized by core symptoms (social communication and restricted and repetitive behaviors) and related comorbidities, including sensory anomalies, feeding issues, and challenging behaviors. Children with ASD experience significantly more feeding problems than their peers. In fact, parents and clinicians have to manage daily the burden of various dysfunctional behaviors of children at mealtimes (food refusal, limited variety of food, single food intake, or liquid diet). These dysfunctional behaviors at mealtime depend on different factors that are either medical/sensorial or behavioral. Consequently, a correct assessment is necessary in order to program an effective clinical intervention. The aim of this study is to provide clinicians with a guideline regarding food selectivity concerning possible explanations of the phenomenon, along with a direct/indirect assessment gathering detailed and useful information about target feeding behaviors. Finally, a description of evidence-based sensorial and behavioral strategies useful also for parent-mediated intervention is reported addressing food selectivity in children with ASD.

A Parent-Mediated Anxiety Intervention Specifically Tailored for Autistic Preschoolers: A Pilot Study.

Autistic children experience reduced participation in life activities. One factor that may contribute to their reduced levels of participation is anxiety, which is identified at higher rates among young autistic children than among their neurotypical peers. Anxiety is also strongly associated with sensory overresponsivity and has a considerable impact on daily functioning. To determine the feasibility, acceptability, and usefulness of a small-group, parent-mediated intervention to prevent and reduce anxiety. Pre-post. University research center. Three parents of autistic children (ages 4-7 yr). Parents completed a six-session group training program. Parents completed an anxiety scale for their child before and after parent training. At the end of training, parents participated in a focus group and were interviewed 4 mo after training. Positively received aspects of the intervention were the benefits of a small group, composed of parents of autistic children, run by a facilitator with expertise in autism and anxiety. Parents gained knowledge, resulting in "taking a different approach" with their child and "seeing an interplay between anxiety and autism." After the intervention, parents reported a reduction in children's reported anxiety levels. Knowledge of autism and anxiety acquired during a parent-mediated group increased parents' understanding of their child's behaviors and assisted them in supporting their child's participation. Further research, including larger studies, is required to determine the effectiveness of this intervention. What This Article Adds: The findings from this research provide preliminary support for the adaptation of an existing parent intervention (Cool Little Kids) to reduce anxiety among autistic children. Parents reported an increased awareness and understanding of anxiety and of the interplay between anxiety and autistic traits. Positionality Statement: This article uses the identity-first language autistic people. This nonableist language describes their strengths and abilities and is a conscious decision. This language is favored by autistic communities and self-advocates and has been adopted by health care professionals and researchers (Bottema-Beutel etal., 2021; Kenny etal., 2016).

1H NMR Metabolomics and Lipidomics To Monitor Positive Responses in Children with Autism Spectrum Disorder Following a Guided Parental Intervention: A Pilot Study.

Autism spectrum disorder (ASD) is a complex neurodevelopmental condition that is characterized by patients displaying at least two out of the classical symptoms, such as impaired social communication, impaired interactions, and restricted repetitive behavior. Early parent-mediated interventions, such as video modeling for parental training, were demonstrated to be a successful low-cost way to deliver care for children with ASD. Nuclear magnetic resonance (NMR)-based metabolomics/lipidomics has been successfully employed in several mental disorder studies. Metabolomics and lipidomics of 37 ASD patients (children, aged 3-8 years), who were divided into two groups, one control group with no parental-training intervention (N = 18) and the other in which the parents were trained by a video modeling intervention (ASD parental training, N = 19), were analyzed by proton NMR spectroscopy. Patients in the ASD parental-training group sera were seen to have increased glucose, myo-inositol, malonate, proline, phenylalanine, and gangliosides in their blood serum, while cholesterol, choline, and lipids were decreased, compared to the control group, who received no parental-training. Taken together, we demonstrated here significant changes in serum metabolites and lipids in ASD children, previously demonstrated to show clinical positive effects following a parental training intervention based on video modeling, delivered over 22 weeks. We demonstrate the value of applying metabolomics and lipidomics to identify potential biomarkers for clinical interventions follow-up in ASD.

MHealth Apps Delivering Early Intervention to Support Parents of Children With Autism Spectrum Disorder: A Scoping Review

Early intervention, and parent-mediated intervention are effective in achieving early childhood development goals for children with autism spectrum disorder. There is a surge in mHealth technologies delivering such interventions. This review aims to explore the concept, context and methodology of implementation of such mHealth apps. A search was conducted using NICE (National Institute of Clinical Excellence) healthcare database, including keyword 'early intervention,' 'mHealth,' 'parent support,' 'apps,' and 'autism.' The quantitative, qualitative, mixed-methods, case reports, grey literature, systematic reviews, clinical trials, and feasibility studies of children between 2 to 6 years with ASD were included from inception of database to December, 2021. Web/Internet-based or computer-dependent programs were excluded. The initial search yielded 3786 studies; 17 were finally included based on the inclusion and exclusion criteria. Studies on a total of mhealth apps were reviewed. Nine apps, apart from TOBY (Therapy outcome by you), lacked a holistic approach and instead targeted a specific difficulty in autism. The provision of support to parents using apps was equally beneficial as in-person support, reduced costs, and improved outcomes in children. The review revealed limited evidence-based mHealth apps available currently in a community setting. This also underscores an opportunity for clinicians to re-direct parents towards evidence-based information and interventions.

Comparing the Effectiveness of Parent-mediated Intervention With Social Media-based and Face-to-face Rehabilitation Approaches on Autism Children’s Social Interaction and Challenging Behaviors: A None-randomized Quasi-experimental Study

Background and Objectives: Children with autism spectrum disorders (ASDs) often require various specialized services and access to various specialists in the fields of medicine, rehabilitation, and education due to the multifaceted problems caused by these disorders. Also, parents of children with ASDs face many challenges which expose them to high levels of stress, anxiety, and depression, as well as the quality of life (QoL) of these parents is often affected. As a result, it is necessary for children with ASDs and their parents, especially their mothers to access various services. The present study was conducted to investigate and compare the effectiveness of the parent-mediated intervention method with social media-based and face-to-face rehabilitation approaches for mothers of children with ASDs. Methods: The research sample included 30 mothers of 3-6-year-old children with ASDs who were randomly assigned to two groups of social media-based education and face-to-face education. Both groups received two training sessions every week for four weeks. The intervention for the first group was based on social media and using video calls, video, and educational texts, and for the second group, it was face-to-face. Results: The results showed that training was effective in improving social interaction and challenging behaviors in children and led to the improvement in depression symptoms, QoL, and sense of well-being in mothers; however the difference in the scores obtained from the two groups of social media-based education and face-to-face education is not significantly different from each other (P>0.05 Conclusion: According to the results of the research, it seems that the effect of the group interaction was significant in the time. Treatment as well as accessibility, choose one of the above two methods that are more economical for the individual according to the conditions, which requires further studies.

Spatial Language and Cognition in Autistic Preschoolers.

ASD is associated with relative strengths in the visuospatial domain but varying abilities in the linguistic domain. Previous studies suggest parallels between spatial language and spatial cognition in older autistic individuals, but no research to date has examined this relationship in young autistic children. Therefore, the purpose of the present study was to investigate the connection between children's spatial language production and nonverbal spatial cognition over time. We also examined two potential predictors of spatial language observed in previous literature, ASD symptom severity and parent spatial language input. In past work investigating spatial language in NT children of the same age, parent-child interactions have been a primary context for study. Therefore, in the present study, we analyzed transcripts of dyadic naturalistic play interactions between autistic children and their parents over three visits from age 30 to 66 months and administered standardized cognitive and ASD diagnostic assessments at each visit. Spatial language production was related to nonverbal spatial cognition even when accounting for overall language production, though the strength of that relationship decreased over time. Parent spatial input (but not ASD severity) significantly predicted children's spatial language production over and above the effect of overall language production. Spatial language is associated with spatial cognition in young autistic children and appears to reflect the interaction of overall linguistic skills and nonverbal spatial cognitive ability regardless of autism severity. Parent-mediated interventions may be a promising context for increasing spatial language in autistic preschoolers.

Acceptability and feasibility of a parent-mediated social-communication therapy for young autistic children in Brazil: A qualitative implementation study of Paediatric Autism Communication Therapy.

Parents of autistic children and health professionals who work with autistic children in Brazil had positive views about introducing Paediatric Autism Communication Therapy as a therapy for autistic children in Brazil. The parents and clinicians also mentioned some difficulties about using Paediatric Autism Communication Therapy in Brazil. We made adaptations to Paediatric Autism Communication Therapy to address these difficulties. Paediatric Autism Communication Therapy is a therapy to support the development of social and communication skills for autistic children aged 2-10 years. The therapy is conducted with the autistic child's parent. Paediatric Autism Communication Therapy has not been used in Brazil before. There are few therapy options available for autistic children in Brazil and we believed that Paediatric Autism Communication Therapy may be useful. We asked three groups of people in Brazil about their views of Paediatric Autism Communication Therapy, after explaining how the therapy works. Group 1 included 18 parents of autistic children aged 2-10 years. Group 2 included 20 health professionals such as psychologists who work with autistic children. Group 3 included 15 parents of autistic children aged 2-7 years who received the Paediatric Autism Communication Therapy. We learned that parents and clinicians felt that Paediatric Autism Communication Therapy would be a beneficial therapy for autistic children in Brazil. We also found out about the challenges of using Paediatric Autism Communication Therapy in Brazil. We used these findings to make small cultural adaptations to Paediatric Autism Communication Therapy to make it more suitable for Brazil.

A mixed-methods examination of clinicians' perceived barriers to telehealth delivered applied behavior analysis.

Following the COVID-19 pandemic, clinicians relied on telehealth to ensure continuity of essential healthcare services, such as Applied Behavior Analysis (ABA). Identifying barriers and examining them in the context of other implementation outcomes is important to support appropriate adaptations and sustainability of telehealth-delivered ABA services. Convergent mixed methods design was utilized to identify barriers experienced by ABA clinicians (N = 388) when delivering ABA services over telehealth to autistic children and their families following the first six months of the COVID-19 pandemic. Additionally, barriers were examined in relation to telehealth implementation outcomes and intentions for continued adoption. Findings reveal that clinicians rated providing direct services (M = 3.52, SD = 1.14) as more difficult than conducting assessments (M = 3.29, SD = 1.06), and both as more difficult than providing parent-mediated interventions [(M = 2.47, SD = 1.11), F(2, 381) = 162.26, p < 0.001]. A principal components analysis indicated a 3-factor solution of barriers related to: (1) technology (α = 0.82), (2) administrative tasks (α = 0.88), and (3) client characteristics (α = 0.88). The most frequently endorsed barriers were related to client characteristics, including increased difficulty providing telehealth services to children who elope (M = 4.37, SD = 0.81), children who exhibit challenging behaviors (M = 4.31; SD = 0.83), and children who are in the preverbal stage or use nonverbal language to communicate (M = 4.07; SD = 1.00). Fewer barriers related to client characteristics uniquely predicted implementation variables including acceptability, appropriateness, and feasibility. Thematic analysis revealed challenges related to technology, caregiver involvement, child engagement, implementation of intervention strategies over telehealth, and administrative or logistical barriers. These findings highlight the need for targeted strategies that facilitate telehealth use to address specific client needs and support the implementation of telehealth services in usual care settings.

Parental perspectives of the everyday experiences of uncertainty among young children on the autism spectrum

BackgroundAnxiety commonly co-occurs in autism. Exploring and understanding potential underpinning mechanisms contributing to and maintaining anxiety in the early years is important in managing anxiety. Intolerance of uncertainty (IU), a tendency to find uncertainty difficult, is a transdiagnostic mechanism contributing to anxiety, but little is known about how IU may be experienced in young children on the autism spectrum. This study investigated parental perspectives of children’s experiences of uncertainty. MethodParents of 13 children aged 4–7 years participated in focus groups. Participants were recruited until data saturation was reached. Thematic analysis using a framework analysis approach was employed, with 18 themes identified. ResultsParents perceived IU as an important construct that often manifested in their children’s heightened emotional and behavioural reactivity. Parents described responses to uncertainty as more intense for their children on the spectrum compared to non-autistic children, with some behaviours associated with or exacerbated by autism characteristics. Parents also described various strategies aimed to reduce uncertainty or increase children’s ability to cope with uncertainty. Most reported that difficulties with uncertainty had a significant negative impact on family well-being. ConclusionsGiven that IU can present early in life for children on the spectrum, with distressing experiences that can negatively impact everyday life and well-being, further research into early and targeted interventions is needed. The findings highlight the support needs for families of young children on the spectrum and will inform the evaluation of a targeted parent-mediated intervention to support children in managing difficulties with uncertainty.

Parent-mediated intervention training for caregivers of children with developmental differences in Zambia

BackgroundLower- and middle-income countries (LAMICs) are under-resourced and have limited intervention services for children with developmental differences and their families. A logical method to address service gaps within resource-scarce contexts is to train caregivers as interventionists, specifically using empirically-supported parent-mediated Naturalistic Developmental Behavioral Interventions (P-M NDBIs; Kasari et al., 2010; Ingersoll & Wainer, 2013). AimsThe study implemented the first P-M NDBI in Zambia and aimed to train caregivers and improve children’s social-communication skills. Methods/proceduresThe current study utilized a mixed-methods, pre-post design and implemented Project ImPACT (Ingersoll & Dvortcsak, 2010, 2019). Participants included 19 Zambian caregivers of children (n = 20) with developmental differences including autism spectrum condition, Down syndrome, and cerebral palsy. Outcomes/resultsFindings indicated that children’s language skills and pretend play skills significantly improved from pre- to post-assessment, and caregivers most frequently used intervention strategies for modeling communication and prompting communication. Conclusions/implicationsThe success and feasibility of implementing Project ImPACT in Zambia, and recommendations for culturally adapting and implementing P-M NDBIs in LAMICs, were discussed.

Video-Feedback Approach Improves Parental Compliance to Early Behavioral Interventions in Children with Autism Spectrum Disorders during the COVID-19 Pandemic: A Pilot Investigation.

In the field of autism intervention, a large amount of evidence has demonstrated that parent-mediated interventions are effective in promoting a child's learning and parent caring skills. Furthermore, remote delivery treatments are feasible and can represent a promising opportunity to reach families at distance with positive results. Recently, the sudden outbreak of COVID-19 dramatically disrupted intervention services for autism and forced an immediate reorganization of the territory services toward tele-assisted intervention programs, according to professional and local resources. Our study aimed to conduct a retrospective pilot exploratory investigation on parental compliance, participation, and satisfaction in relation to three different telehealth intervention modalities, such as video feedback, live streaming, and psychoeducation, implemented in the context of a public community setting delivering early autism intervention during the COVID-19 emergency. We found that parents who attended video feedback expressed the highest rate of compliance and participation, while parental psychoeducation showed significantly lower compliance and the highest drop-out rate. Regardless of the tele-assistance modality, all the participants expressed satisfaction with the telehealth experience, finding it useful and effective. Potential benefits and advantages of different remote modalities with reference to parent involvement and effectiveness are important aspects to be taken into account and should be further investigated in future studies.

Recommendations for Diversifying Racial and Ethnic Representation in Autism Intervention Research: A Crossover Review of Recruitment and Retention Practices in Pediatric Mental Health.

Disparities in diagnosis and access to healthcare and therapeutic services are well-documented for children with autism spectrum disorder (ASD) from minoritized races and ethnicities, but there is little empirical research to guide the selection and implementation of interventions and practices that will effectively support racially/ethnically diverse children with ASD and their families. This cross-over systematic review summarizes parent-mediated intervention research of children with or at risk for mental health disorders to identify potentially effective recruitment and retention strategies for diverse participants in parent-mediated intervention research for children with autism. Electronic database keyword, lead author name searches in PyschNet, MEDLINE, and ancestral searches were conducted to identify 68 relevant articles that used experimental designs to evaluate the effects of parent-mediated interventions on children with or at risk for mental health disorders. Articles were coded for participant demographics; intervention setting and type, recruitment and retention strategies, cultural adaptation of intervention, and reported attrition. Findings are discussed and applied to practices in autism parent-mediated intervention research. Suggestions for future research and limitations are discussed.

Are Maternal Self-Reports of Social Difficulties Apparent in Interactions with their Children?

To inform parent-mediated intervention models, this study assessed if family affectedness (i.e., elevated autism symptoms in more than one child) was associated with maternal self-reported social difficulties (as indexed by the Social Responsiveness Scale; SRS-2), and social interactions during play. As part of a prospective study, 71 mothers completed the SRS-2 and a play session. Interactions were coded for a range of prosocial behaviors, including gaze, positive affect, and vocalizations. Overall, mothers with multiple children exhibiting autism symptoms self-reported significantly more social difficulties on the SRS-2, when compared to mothers raising only typically developing children, or one child with autism. However, even with elevated SRS-2scores, mothers with higher family affectedness demonstrated comparable social exchanges with their children during play.

Long-term follow-up of telehealth-enabled behavioral treatment for challenging behaviors in boys with fragile X syndrome

BackgroundA significant proportion of boys with fragile X syndrome (FXS), the most common known genetic cause of intellectual disability, exhibit challenging behaviors such as aggression and self-injury that can cause significant distress to families. Recent evidence suggests that coaching caregivers to implement functional communication training (FCT) with their child via telehealth can help to ameliorate these behaviors in FXS. In the present study, we followed families who had participated in our previous randomized controlled trial of FCT to evaluate the longer-term effects of FCT on challenging behaviors in this population.MethodsIn study 1, follow-up emails, phone calls, text messages, and letters were sent to caregivers of 48 boys with FXS who had completed our previous study conducted between 2016 and 2019. The main outcome measures administered at follow-up were the Aberrant Behavior Checklist–Community (ABC-C) and the Parenting Stress Index, 4th Edition (PSI-4). In study 2, families who had received FCT treatment but whose child exhibited challenging behaviors daily at follow-up received a 1-h parent training booster session to determine whether the intervention effect could be recovered.ResultsSixteen (66.7%) of 24 families who had received FCT treatment and 18 (75.0%) of 24 families who had received treatment as usual were traced and consented between March and August 2021. The mean follow-up time was 3.1 years (range, 1.4 to 4.2 years). Longitudinal mixed effects analyses indicated that boys who had received FCT were more likely to show improvements on the irritability and lethargy/social withdrawal subscales of the ABC-C over the follow-up interval compared to boys who had continued with treatment as usual. Four of the six boys who had received the booster parent training session via telehealth were reported to exhibit fewer forms of challenging behavior at a 4-week follow-up.ConclusionsEmpowering parents to implement behavior analytic treatments with their child in their own home can have durable effects on maintaining low levels of challenging behaviors in boys with FXS. These data further support the need to implement parent-mediated interventions for challenging behaviors in this population at an early age.Trial registrationClinicalTrials.gov, NCT03510156. Registered 27 April 2018

Managing Autism Spectrum Disorder in the Face of Pandemic Using Internet-Based Parent-Mediated Interventions: A Systematic Review of Randomized Controlled Trials.

ASD is a neurodevelopmental disorder that is primarily treated with psychosocial intervention. However, it is costly and requires extensive resources to be effective. This inaccessibility is also further worsened by the ongoing COVID-19 pandemic, making the shift to a digital approach a sensible option. Among the available ASD therapies, parent-mediated interventions (PMIs) have a broad application and lower implementation cost. Hence, this systematic review aims to evaluate the potential that telehealth-based PMI holds and explore its feasibility throughout the COVID-19 pandemic. To build up this study, a systematic search through PubMed, Scopus, ProQuest, Wiley, and Cochrane was performed until 14 January 2021. Using the preferred Reporting Items for Systematic Review and Meta-Analysis guidelines, we ultimately included six studies in the review. Each study was evaluated utilizing the Cochrane Risk of Bias (ROB)-2 tool. Generally, parents’ outcomes (knowledge, satisfaction, and compliance) were higher in intervention group (E-learning) compared to control (standard treatment or wait-list). Children also showed some improvements in social skill, communication skill, and intelligence after receiving the treatment. In addition, coaching or therapist sessions were found to be crucial as adjuvant to support parents during the intervention. In conclusion, internet-based parent-mediated interventions are promising and recommended for managing ASD patients, in the face of pandemic. However, more variety in study locations is also needed, particularly in low- and middle-income countries, to tackle the knowledge and clinical application gap. Further research should be conducted with a uniform measurement tool to achieve the same perception and reliable pooled analysis.

Telehealth Training in Naturalistic Communication Intervention for Mothers of Children with Angelman Syndrome.

Objectives Young children with Angelman syndrome have significant delays in expressive communication. Parents of children with Angelman syndrome require training to support their child’s communication development. Unfortunately, parent training focused on the needs of families of children with rare genetic syndromes is unavailable to many families. The purpose of this study was to evaluate a telehealth parent training program on naturalistic communication intervention for young children with Angelman syndrome.MethodsUsing two single-case multiple baseline designs across a total of six parent–child dyads, we evaluated the effects of a telehealth parent training program on parent implementation fidelity of a naturalistic communication intervention, child communication, and child engagement.ResultsWith the telehealth parent training program, parent implementation fidelity of naturalistic communication intervention improved, maintained and generalized to untrained home routines. Small effects on child communication and engagement were observed during the program.ConclusionsParents of children with Angelman syndrome were successfully taught via telehealth to implement a naturalistic communication intervention with their child at home. Additional research is needed to promote positive child communication outcomes through parent-mediated intervention.

Feasibility and Acceptability of Delivering Pivotal Response Treatment for Autism Spectrum Disorder via Telehealth: Pilot Pre-Post Study.

BackgroundPivotal response treatment (PRT), an evidence-based and parent-delivered intervention, is designed to improve social communication in autistic individuals.ObjectiveThe aim of this study was to assess the feasibility, acceptability, and clinical effects of an online model of PRT delivered via MindNest Health, a telehealth platform that aims to provide self-directed and engaging online modules, real-time coaching and feedback, and accessible stepped-care to large populations of parents seeking resources for their autistic children.MethodsMale and female autistic children, aged 2-7 years with single-word to phrase-level speech, and their parents were eligible to participate in the study. Families were randomized to the online parent training condition or control condition. The online component of the intervention consisted of eight 20-minute online courses of content describing parent training principles in PRT. Four 1-hour videoconferences were held after course 1, course 3, course 5, and course 8. Parents were given 1-2 weeks to complete each course. Parents completed the Client Credibility Questionnaire (CCQ) at week 2 and at the study endpoint, as well as the Behavioral Intervention Rating Scale (BIRS) at the study endpoint to assess parental expectancies, and treatment acceptability and effectiveness.ResultsNine of 14 participants completed the study curriculum in the online parent training condition, and 6 of 12 participants completed the control condition. Thus, a total of 58% (15/26) participants across both groups completed the study curriculum by study closure. Within the online parent training condition, there was a significant increase in mean CCQ total scores, from 25.38 (SD 3.25) at baseline to 27.5 (SD 3.74) at study endpoint (P=.04); mean CCQ confidence scores, from 6.0 (SD 1.07) at baseline to 6.75 (SD 0.89) at study endpoint (P=.02); and mean CCQ other improvement scores, from 5.25 (SD 0.89) at baseline to 6.25 (SD 1.28) at study endpoint (P=.009). Within the control condition, a modest increase in mean CCQ scores was noted (Confidence, difference=+0.25; Recommend, difference=+0.25; Total Score, difference=+0.50), but the differences were not statistically significant (Confidence P=.38, Recommend P=.36, Total Score P=.43). Among the 11 parents who completed the BIRS at the study endpoint, 82% (n=9) endorsed that they slightly agree or agree with over 93% of the Acceptability factor items on the BIRS.ConclusionsThe feasibility of this online treatment is endorsed by the high rate of online module completion and attendance to videoconferences within the online parent training group. Acceptability of treatment is supported by strong ratings on the CCQ and significant improvements in scores, as well as strong ratings on the BIRS. This study’s small sample size limits the conclusions that can be drawn; however, the PRT MindNest Health platform holds promise to support parents of autistic children who are unable to access traditional, in-person parent-mediated interventions for their child.

Parents' knowledge and attitude and behavior toward autism: a survey of Chinese families having children with autism spectrum disorder.

BackgroundIn recent years, parent-mediated intervention for children with autism spectrum disorder (ASD) has increased. Therefore, implementing effective parent training programs for parents of children with autism is of paramount importance, particularly in low- and middle-income countries. However, little is known about the status of and gaps in parents’ knowledge on ASD, which may hinder the development of valid parental training programs. Herein, we aimed at exploring the status of Chinese parents’ knowledge, attitude and behavior toward ASD, and potential factors affecting the acquisition of correct knowledge.MethodsThis study used a self-designed parental knowledge questionnaire of autism (PKQA) comprising 20 questions alongside another questionnaire comprising additional 17 questions covering the aspects of family demographics, attitudes, and behaviors of parents. In total, we included 394 parents who visited the outpatient department of the Child’s Development and Behavior Center of the Third Affiliated Hospital of Sun Yat-Sen University between December 2018 and May 2019, with their children meeting the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) diagnostic criteria for ASD.ResultsThe median knowledge score in the PKQA was 15 [interquartile range (IQR), 13–17]. Advanced paternal age and longer time interval from diagnosis to enrolling into the parent training program were associated with a lower total knowledge score (all P<0.001). Higher maternal education attainment, higher family income, child being currently under intervention, and family members sharing a common perception of the diagnosis were associated with a higher total knowledge score (all P<0.01). Reading autism-related books (P<0.001) or attending professional lectures (P=0.019) were also associated with a higher total knowledge score.ConclusionsTaken together, this study revealed that family demographics and parents’ attitudes and behaviors toward ASD may significantly influence their knowledge about autism, suggesting the need for promoting more targeted parental skills training programs.

Promotion and implementation effectiveness of World Health Organization's Caregiver Skills Training program in Taiwan.

The World Health Organization (WHO) developed the Caregiver Skills Training for Families of Children with Developmental Delays and Disabilities (CST) with support from Autism Speaks to address the resource gaps and worldwide needs for interventions for children with developmental disorders or delays, especially those with autism spectrum disorder (ASD), and their families. Evidence has indicated that parent-mediated interventions benefit both caregivers and children by strengthening caregivers' knowledge and confidence and children's social communication skills and behavioral regulation. The CST-Taiwan team began the prepilot field trial in 2017 and developed the project to serve families in various locations. This study (1) delineated the adaptations and promotion of CST-Taiwan; (2) determined the program's effectiveness in the promotional stage, in terms of caregiver and child outcomes, and (3) examined the maintenance of its effects. The materials, delivery, and facilitator training procedure of the original CST were adapted to Taiwan. The quantitative data indicated that CST-Taiwan is a promising program, it positively affected caregiver knowledge and confidence and reduced the severity of the children's autistic symptoms. The 3-month follow-up results suggested that the effects persisted. Thus, CST-Taiwan, and its promotional strategies are feasible and effective.

Implementing the WHO caregivers skills training program with caregivers of autistic children via telehealth in rural communities.

BackgroundFor families with autistic children living in rural areas, limited access to services partly results from a shortage of providers and extensive travel time. Telehealth brings the possibility of implementing alternative delivery modalities of Parent Mediated Interventions (PMIs) with the potential to decrease barriers to accessing services. This study aimed to evaluate the feasibility and acceptability of implementing the World Health Organization-Caregivers Skills Training program (WHO-CST) via an online, synchronous group format in rural Missouri.MethodsWe used a mixed methods design to collect qualitative and quantitative data from caregivers and program facilitators at baseline and the end of the program, following the last home visit. Caregivers of 14 autistic children (3–7 years), residents of rural Missouri, completed nine virtual sessions and four virtual home visits.ResultsFour main themes emerged from the focus groups: changes resulting from the WHO-CST, beneficial aspects of the program, advantages and disadvantages of the online format, and challenges to implementing the WHO-CST via telehealth. The most liked activity was the demonstration (36%), and the least liked was the practice with other caregivers. From baseline to week 12, communication skills improved in both frequency (p < 0.05) and impact (p < 0.01), while atypical behaviors decreased (p < 0.01). For caregivers' outcomes, only confidence in skills (p < 0.05) and parental sense of competence (p < 0.05) showed a positive change.ConclusionOur results support the feasibility of implementing the WHO-CST program via telehealth in a US rural setting. Caregivers found strategies easy to follow, incorporated the program into their family routines, and valued the group meetings that allowed them to connect with other families. A PMI such as the WHO-CST, with cultural and linguistic adaptations and greater accessibility via telehealth-plays an essential role in closing the treatment gap and empowering caregivers of autistic children.