Parents of Newly Diagnosed Preschool Children With Autism Spectrum Disorder: The Effectiveness of a Self-Directed On-line Parent Training and Support Program on Parent and Child Outcomes
试验速览
- 阶段
- 不适用
- 入组人数
- 60
- 主要终点
- Change in the Parent's Knowledge of ASD and Early Home Intervention Questionnaire.
研究概览
简要总结
Manitoba parents of preschool children newly diagnosed with Autism must wait up to a year to receive government funded services for their child. During this delay parents need support and training to promote their child's development. The purpose of this research is to develop and evaluate an on-line, parent training and support program that will assist parents during this time. It is predicted that if parents receive on-line training and support they will increase their parenting knowledge and skills, reduce their stress, and create better outcomes for their child, in comparison to parents who do not receive the training. The experimental study (n=60) will use a randomized, masked, waitlist control design that compares a treatment group to a control group. Descriptive statistics will be used to describe differences between groups, ANCOVA's to test for differences between groups, and Pearson correlations to describe the relationship between parent stress and outcomes.
详细描述
Statement of the Research Problem/Purpose/Objectives Autism Spectrum Disorder (ASD) is a neurological disorder that causes complex developmental difficulties within the first three years of life. Preschool children diagnosed with ASD typically have pervasive deficits in social interaction and communication, and the occurrence of repetitive and restrictive behaviours. Parenting a preschool child with these characteristics, coupled with the devastating impact of their child receiving a diagnosis of ASD, creates high levels of parental anxiety, stress, depression, and general mental health difficulties. Given the seriousness of the child's diagnosis and the compromise in parenting and family functioning, families are referred to formalized treatment programs that provide support for both the child and parents. However, with the recent rise in Autism prevalence rates Manitoba parents now wait up to a year to receive formalized government funded treatment services for their child and family. This delay in formalized service has critically important consequences for the child, the family, and society.
To bridge this gap in service, parents could be afforded the opportunity to participate in a cost efficient self-directed online training and support program specific to parents in Manitoba. Given that there is consistent evidence to support the effectiveness of parent training and involvement once a child has entered a formalized treatment program, the potential effectiveness of parent training and support while waiting for a formalized treatment program should also be considered.
Research on the efficacy and effectiveness of on-line self-directed Autism parent training programs is extremely limited. Additionally, there is a lack of knowledge regarding the appropriate content, timing, and duration of a training program for parents of newly diagnosed children with ASD and conflicting evidence on the interactional effects between parent training and levels of parenting stress during this time period.
The primary purpose of this study is to address the training and support requirements of parents of preschool children newly diagnosed with ASD, by developing and evaluating the effectiveness of a self-directed on-line ASD parent training and support program. The secondary purpose is to assess the interactional effects, of a self-directed on-line ASD parent training and support program, and parent stress, on parent and child outcomes. It is predicted that if parents receive on-line training and support they will increase their parenting knowledge and skills, reduce their levels of stress, and create better engagement and communication outcomes for their child, in comparison to parents who do not receive the training and support.
Methods: The experimental study will use a randomized, masked, waitlist control design that compares an intervention treatment group to a waitlist control group. After meeting criteria and consent requirements for participation in the study, all families will participate in pre-measures. Families will then be randomized to either a treatment group or a waitlist control group. After pre measures the treatment group parents will receive access to the on-line self-directed training and support program for a 4-month period. After this time period both groups will then be re-assessed on the Parent and Child outcome measures and then the Waitlist Group will be given access to the on-line self-directed training and support program.
研究设计
- 研究类型
- Interventional
- 分配方式
- Randomized
- 干预模型
- Parallel
- 主要目的
- Treatment
- 盲法
- Single (Outcomes Assessor)
入排标准
- 年龄范围
- — 至 59 Months（Child）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Children will be eligible for the study if they are less than 60 months of age and have a formal documented diagnosis of ASD.
排除标准
- •Children who have another formally diagnosed co-morbidity (e.g. Cerebral Palsy, FASD, ADHD), or who have parents not able to read English will be excluded from the study.
结局指标
主要结局
Change in the Parent's Knowledge of ASD and Early Home Intervention Questionnaire.
时间窗: Baseline and then in four months
This questionnaire was developed specifically for this study to assess the parent's perceptions of their knowledge of ASD and early home intervention techniques. This questionnaire was developed because no pre-existing measure could be found that addressed caregiver perceptions of their knowledge of ASD and early intervention techniques. Parents in the study will respond to 30 questions related to the diagnosis of ASD (e.g. I understand how ASD is diagnosed.); characteristics of children with ASD (e.g. I understand why my child may have unusual sensory interests); parental support (e.g. I know the services available in the community to support my child and family); and parent early intervention techniques (e.g. I know ways to promote communication in my child) using a 5 point scale from 1 (no understanding) to 5 (an excellent understanding) to produce an overall score (range 30 to 150).
Change in Expressive Communication Measure
时间窗: Baseline and then in four months
An observational measure will be used to evaluate the child's expressive communication during the pre and post 10 minute video recorded parent/child play session. An expressive communication measure was chosen because it is a core deficit of ASD and a common outcome measure used to evaluate parent training interventions for toddlers and preschoolers with ASD (Beaudoin, Sebire, \& Couture, 2014). The 10 minute parent/child video recorded play session from both pre and post intervention will be observed continuously and coded in 5 second intervals for five levels of child expressive communications: Gestures, Vocalizations, Word approximations, Words, and Multi-word utterances. Operational definitions from Harjuson-Webb and Robbins, (2012), are used. A data collection sheet will be used to record a frequency count in each category over the 10 minute video recorded caregiver/child play session.
Change in the Early Intervention Techniques Parent Rating Scale.
时间窗: Baseline and then in four months
This rating scale assesses the parent's use of early intervention techniques during the pre and post 10 minute video recorded parent/child play session. The rating scale was developed specifically for this study to assess the parent's use of the early intervention techniques specific to the training involved in this study. The examiner will watch the ten minute video and then rate the parents on their frequency of usage of seven early intervention techniques; 1) Follows the Child's Lead/Engages Child, 2) Imitation, 3) Expanding/Modelling, 4) Reciprocity/Turn Taking, 5) Promotes Communication, 6) Promotes Regulation, and 7) Promotes Appropriate Behaviour. Each individual item is rated using 1-5 Likert scale for frequency, 1) Never, 2) Rarely, 3) Sometimes, 4) Often, 5) Always, to produce an overall score (Range 7-35).
Change in Parent/Child Joint Engagement
时间窗: Baseline and then in four months
An observational measure will be used to evaluate the child's level of joint engagement with the parent during the pre and post 10 minute video recorded parent/child play session. An evaluation of joint engagement was chosen as it is an important metric of parent child interactions, an important developmental precursor to communication, and a measurement that has been shown to be sensitive to treatment related changes for toddlers and early preschool children (Kasari et al., 2010; Schertz, Odem, Baggett, \& Sideris, 2013). The 10 minute parent/child video recorded play session from both pre and post intervention will be observed continuously and coded in 5 second intervals for three levels of child engagement: Unengaged, Object Engagement, and Joint Engagement. A data collection sheet for the time sampling procedure will be used to record a 120 - 5 second intervals, which will total 10 minutes.
次要结局
- Change in the Parenting Stress Index-Short Form(Baseline and then in four months)
- Change in the Family Support Scale(Baseline and then in four months)
研究者
ARobson
Principal Investigator
University of Manitoba