Academic literature on the topic 'Educational programs Autism Spectrum Disorder (ASD) Caregivers Preadolescents'

The relationship between siblings is often the longest lasting relationship within an individual’s life (Cicirelli, 1995). This relationship is especially important for individuals with developmental difficulties, since their siblings are usually those who undertake the role of caregivers, after the parents are no longer available to do so. However, recent research suggests that establishing a close relationship with a sibling diagnosed with autism spectrum disorder (ASD) may be considerably more challenging compared to siblings with other developmental difficulties (Tomeny et.al., 2017). Although the siblings of individuals diagnosed with ASD have received a certain amount of attention in the last decade worldwide, this area is still under-researched in Croatia, and is insufficiently addressed in interventions aimed at helping families with children diagnosed with ASD. The aim of this study was to explore the experiences of siblings living with a brother with ASD and their perceptions of the received and needed support. Six semi-structured interviews with adult siblings of individuals with ASD were conducted and analysed using thematic analysis. Generally, most of the interviewed individuals show a relatively high level of acceptance and affection towards their brother and feel that they have adapted to the brother’s condition. Although they mentioned some positive experiences and outcomes, they reported on many difficult aspects of growing up with their brother on the autism spectrum. None of them received any professional support during their growing up, and their opinions about the potential usefulness of programs targeted at siblings are divided.

Previous literature has shown that complementary and alternative medicine (CAM) is steadily increasing in autism spectrum disorder (ASD). However, little data is currently available regarding its use, safety, and efficacy in children with ASD. Thus, the purpose of this study is to describe the use of supplement-based CAM therapies in children between the ages of 4 to 17 years with ASD. This population-based, cross-sectional study evaluated children with ASD regarding supplement use. A total of 210 participants were recruited from a variety of sources including educational and physical activity programs, and social media to complete a questionnaire. Primary caregivers provided information on current supplement based CAM use. Data evaluated the proportion of children that used supplement therapies, the types of supplements used, reasons for use, perceived safety, and demographic factors associated with use (e.g. income, parental education, severity of disorder). Seventy-five percent of children with ASD consumed supplements with multivitamins (77.8%), vitamin D (44.9%), omega 3 (42.5%), probiotics (36.5%), and magnesium (28.1%) as the most prevalent. Several supplements, such as adrenal cortex extract, where product safety has not yet been demonstrated, were also reported. A gluten free diet was the most common specialty diet followed amongst those with restrictions (14.8%). Health care professionals were the most frequent information source regarding supplements; however, 33% of parents reported not disclosing all their child’s supplements to their physician. In conclusion, the use of supplement therapies in children with ASD is endemic and highlights the need for further research concerning public health education surrounding safety and efficacy.

An Individualized Mental Health Intervention for ASD (AIM HI) was developed in collaboration with community stakeholders for delivery in mental health services in response to therapist- and caregiver-identified need to improve services for children with autism spectrum disorder (ASD). Primary findings from a cluster randomized Hybrid Type 1 effectiveness-implementation trial conducted in publicly funded mental health programs demonstrated the effectiveness of AIM HI therapist training on child and caregiver outcomes. This study examined therapist outcomes and therapist experience as a moderator of training effects. Mental health programs were randomized to immediate AIM HI training or usual care. Therapists and child/caregiver clients were recruited from participating programs. Therapists in the AIM HI training condition received consultation for 6 months while delivering AIM HI. Differences between training conditions were examined using multilevel modeling. Therapists receiving AIM HI training were observed to use more extensive active teaching strategies with caregivers, engagement strategies with children, strategies promoting continuity of care, and had more structured sessions with more extensively pursued skill building. Therapist licensure moderated some training outcomes. The current study provides support for evidence-based practice implementation in usual care mental health services. Lay abstract Publicly funded mental health services play an important role in caring for school-age children with autism spectrum disorder (ASD); however, therapists report a lack of specialized ASD training, which families identity as a barrier in obtaining mental health services for their children. An Individualized Mental Health Intervention for ASD (AIM HI) was developed in collaboration with community stakeholders to respond to identified needs of children and community therapists. The current study examined the effects of therapist training in AIM HI on the changes in therapist practice, including therapists’ use of evidence-based intervention strategies in session. Data were collected from a study conducted in community outpatient and school based mental health programs randomly assigned to receive AIM HI therapist training or observation of routine care. Therapist and child clients were enrolled from participating programs. Therapists in AIM HI training received training and consultation for 6 months while delivering the AIM HI intervention to a participating client; therapists in usual care delivered routine care. Both groups of therapists video recorded psychotherapy sessions which were scored by trained raters. Differences between training groups were examined using multilevel modeling. Therapists trained in AIM HI were observed to use more extensive active teaching strategies with caregivers, engagement strategies with children, strategies promoting continuity of care, and had more structured sessions with more effective pursuit of caregiver and children skill teaching. Therapist licensure moderated some training outcomes.

AbstractThis study aimed to learn about the experiences of families of individuals with a dual diagnosis of Down syndrome (DS) and autism spectrum disorder (ASD) (DS-ASD), and to document the journey from early concerns to diagnosis and intervention. Caregivers completed an online survey describing their journey raising a child with DS-ASD. Survey responses were analyzed qualitatively and coded into categories to highlight common themes. Stereotypy, severe communication impairments, and behavioral difficulties prompted caregivers to pursue further evaluation. There was a mean 4.65-year gap between first noticing symptoms and receiving an ASD diagnosis. Several therapeutic interventions were identified as beneficial, including behavioral and communication support. Caregivers expressed frustration and described high levels of stress and social isolation. The diagnosis of ASD in children with DS is often delayed, and caregivers’ initial concerns are frequently dismissed. Raising a child with DS-ASD can lead to social isolation and elevated caregiver stress. More research is needed to tailor diagnostic algorithms and therapeutic interventions to the unique needs of this patient population. Caregivers yearn for improved understanding of DS-ASD, more targeted therapies and educational programs, and more overall support.

Purpose Children diagnosed with autism spectrum disorder (ASD) and their families especially their mothers face numerous and pervasive challenges. Difficulties to access quality care, financial burden, issues of adulthood and their child’s behaviors may produce significant stressors to mothers. This study aims to assess perceived stress among mothers of children with ASD in Egypt. Design/methodology/approach A cross-sectional study was conducted in Mansoura University Hospital, Egypt on 94 mothers of children with ASD using a structured questionnaire of the socio-demographic and clinical features of the studied mothers and their children and the perceived stress scale (PSS). Findings The mean total PSS score of mothers was 31.97 ± 12.39 and the level of autism had a statistically significant relation with stress perceived by the studied mothers. Research limitations/implications The findings in this study were based on caregivers’ self-reporting. As such, inaccurate reporting might have biased the findings. The main limitations of this study include non-participation and dropout. During data collection, some mothers declined to participate in the study. Also, the current study was conducted in one hospital. This represents a loss of valuable information and may weaken the generalizability of the current study findings. Another limitation is the use of a convenience sample in the study. With the use of convenience sampling, there is an increased risk of bias, as study participants may not accurately reflect the characteristics of the total population. Practical implications Caregivers’ education programs through media and press should be developed for mothers of children with ASD to help those who experience levels of stress by presenting knowledge about ASD and treatment and training on adaptive coping methods and teaching communication and problem-solving. Recognizing levels of stress and parent counseling may be a useful strategy. Regular periodic meetings should be conducted between mothers and hospital personnel to promote proper communication. One key policy implication, this paper can derive from this study is the need for cooperation between the Ministry of Health, social welfare and other relevant governmental and non-governmental organizations to provide support for families of individuals with ASD such as financial aids. It is also recommended that future study would benefit a larger sample to enhance external validity. As well, future qualitative research is recommended to more fully understand the lived experience of mothers of children with ASD. Originality/value This study provides evidence that mothers of children with ASD experienced high perceived stress. Caregivers’ education programs through media and press should be developed in Egypt for mothers of children with ASD.

Children with autism spectrum disorder (ASD) often experience skill deficits that can negatively affect long-term outcomes. Interventions based on applied behavior analysis (ABA) yield improvements in targeted skills. However, families often have difficulty accessing ABA services. The purpose of this study was to evaluate the efficacy of a caregiver coaching program delivered via telehealth. Thirty children with ASD and their caregivers (e.g., parents, grandparents) participated in all phases of the study. The program consisted of therapists providing coaching in English or Spanish to caregivers of children with ASD via synchronous video call telehealth visits, typically provided one to two times per week. Caregivers received coaching in interventions (e.g., functional communication training, discrete trial teaching, total task chaining, and naturalistic teaching) to address individualized goals. We collected data on caregiver treatment fidelity and child outcomes (i.e., Vineland-3, observation, and analysis of time series data). Caregivers implemented intervention procedures with 95% accuracy on average. The single-case effect sizes calculated based on the time series baseline and intervention data yielded medium, large, or very large improvements for 85% of goals addressed. Results indicated that the children improved on appropriate engagement (measured via observation), but there was no statistically significant improvement for the remaining pre-post measures. These results, along with the results of previous studies, provide preliminary support for the use of telehealth to provide ABA services. However, there is a need for additional research evaluating the efficacy of these types of programs.

AbstractSocial impairments characteristic of autism spectrum disorder (ASD) are evident in early childhood and often worsen. Research indicates including caregivers in social skills groups may increase generalization for child outcomes, while also benefiting caregivers by increasing their self-confidence in ability to coach their child. Further, there may be an impact on the entire family. This pilot study examined benefits to the caregiver–child relationship, caregiver self-efficacy, parenting style, and family functioning in an exploratory study of the PEERS® for Preschoolers (P4P) social skills program. The present pilot study aimed to examine the above variables with 15 children with ASD (11 boys; 66.7% white) without intellectual impairment in four groups, applying this novel intervention, informed by other PEERS® programs. Children ranged from 4 to 7 years (M = 4.87, SD = 1.25). Children and caregivers participated in groups twice weekly (i.e., 8 weeks, 16 sessions). Measures that captured specified variables were completed by caregivers as well as through an observational task. Results showed increases in parenting self-efficacy and positive caregiver–child interaction strategies, specifically in caregiver affect/animation and achievement orientation over intervention and at follow-up. Caregivers also noted improvements in overall parenting styles. Changes in family functioning were not indicated. This pilot intervention may positively impact both the child and caregiver, though more research is needed with larger samples that include a control group and apply conclusions to the larger population. Future research should address why changes to family functioning did not emerge and specific mechanisms that lead to positive caregiver-specific outcomes.