Autism spectrum disorders (ASD) are disabling and impairing conditions affecting 1% of children in Norway. ASD is hallmarked by severe social deficit and lack of independence causing reliance on supportive systems throughout life. Parents are usually the primary caretakers and support, often throughout life. Normal parenting skills are however often ineffective due to the social dysfunction of the child with ASD. This causes high stress as the demands exceed the resources and capability of the parent. The high stress is associated to increased risk for mental health problems, divorce, unemployment and reduced quality of life. High parent stress may also reduce the effect of interventions in ASD. However, although the need is great and parental follow-up is an integral part of health care for ASD children, there is a lack of evidence for such interventions.
The current project aims to evaluate a specific parent program that is in clinical use - the Incredible Years for children with ASD - compared with a standardised treatment as usual (TAU) composed of clinical parent workshops ("first aid for parents").
The aim is to evaluate parenting interventions and promote evidence-based practice in a clinical setting. The investigators will perform a randomized controlled trial and qualitative interviews to compare the effectiveness of treatment as usual (TAU) versus a manualized parent program (IY-ASLD). The study aims to investigate if the parental program may reduce parent stress and improve parental competence and self-efficacy. Secondary goals are to investigate whether the parent program may improve quality of life for the parent and the child and have an impact on long-term child functioning and service use.
Parent of child diagnosed with an autism spectrum disorder, age 2-6
Level of Norwegian insufficient to benefit from a parental program without the use of an interpreter
Ongoing major crisis in the family or major disabling condition in the participating parent
Ongoing participation in another manualized (any) parent program
Parallel
Incredible Years Autism Spectrum and Language Delay Programme
BehavioralIncredible Years Autism Spectrum and Language Delay Programme is a manualised group based intervention in 13 weekly 2-hour sessions. The programme targets parents of children aged 2-6 years, with autism spectrum disorder or language delay.
First Aid for Parents
Behavioral"First Aid for Parents" is a program consisting of three full day work-shops targeting communication, interaction and daily living skills for parents of children with autism spectrum disorders
Parenting Stress Index - 4 Short Form
The PSI SF is a 36-item parental self-report questionnaire that assesses the stress related to interaction with the child, in relationship to the parents' personal situation and well-being. It has good psychometric properties and is one of the most commonly used questionnaires globally and is used in the corresponding studies of parental programs. To be filled in individually by all participating adults.
Parenting Stress Index - 4 Short Form
The PSI SF is a 36-item parental self-report questionnaire that assesses the stress related to interaction with the child, in relationship to the parents' personal situation and well-being. It has good psychometric properties and is one of the most commonly used questionnaires globally and is used in the corresponding studies of parental programs. To be filled in individually by all participating adults.
Parenting Stress Index - 4 Short Form
The PSI SF is a 36-item parental self-report questionnaire that assesses the stress related to interaction with the child, in relationship to the parents' personal situation and well-being. It has good psychometric properties and is one of the most commonly used questionnaires globally and is used in the corresponding studies of parental programs. To be filled in individually by all participating adults.
The Vineland Adaptive Behavior Scales - Second Edition
The Vineland is a measure of daily function in various domains, including social and communicative function. This measure is often used as part of the clinical assessment and level of functioning of the child, and provides standardised and age-normed scores for level of functioning in the various domains.
The Vineland Adaptive Behavior Scales - Second Edition
The Vineland is a measure of daily function in various domains, including social and communicative function. This measure is often used as part of the clinical assessment and level of functioning of the child, and provides standardised and age-normed scores for level of functioning in the various domains.
The Pediatric Quality of Life Inventory (PedsQL)
The PedsQL is a validated questionnaire of pediatric quality of life. The parent proxy for children 2-4 years consists of 21 items in four domains: physical, emotional, social and preschool function. To be filled in individually by all participating adults.
The Pediatric Quality of Life Inventory (PedsQL)
The PedsQL is a validated questionnaire of pediatric quality of life. The parent proxy for children 2-4 years consists of 21 items in four domains: physical, emotional, social and preschool function. To be filled in individually by all participating adults.
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Haukeland University Hospital
Lead sponsor
Helse Fonna
Collaborator
St. Olavs Hospital
Collaborator
University of Bergen
Collaborator
Norwegian University of Science and Technology
Collaborator
NORCE Norwegian Research Centre AS
Collaborator
