None listed
Conditions
Brief summary
Young children on the autism spectrum often experience difficulties with anxiety and fears about the unknown (also known as intolerance of uncertainty). This study will investigate the efficacy of a parent-mediated group-based programme, (Coping with Uncertainty in Everyday Situations, CUES) to improve children's ability to tolerate uncertainty and reduce anxiety. Participants will be the primary caregivers of young children (4-7 years of age) diagnosed on the autism spectrum, randomised to receive either intervention immediately or to a waitlist condition. The primary hypothesis is that, compared to waitlist group, parents in the intervention group will improve ratings of their child's ability to tolerate uncertain situations. The outcomes from this project will evaluate if this early intervention may help caregivers support their child's ability to manage uncertainty and reduce emerging anxiety in young children on the autism spectrum.
Interventions
The intervention investigated in this trial is a parent-mediated group-based therapy called Coping with Uncertainty in Everyday Situation (CUES©), compared to a waitlist comparator condition. Therapy will be conducted in small face-to-face groups (6-8 participants (parents/primary caregivers) per group), led by a psychologist (clinical or registered) with experience in delivering group interventions, in 8 2-hour weekly sessions. Intervention sessions will be based at CliniKids, Perth, Western Australia. The intervention is designed to increase a child’s ability to tolerate uncertainty and develop a more flexible approach to uncertain situations or everyday events. Intervention is parent-mediated; that is, intervention where parents are the primary agent of change for children’s development. The intervention is designed to be delivered by community-based professionals with knowledge and experience of working with children with ASD. A clinical psychologist will run each group with a second facilitator (registered or training psychologist, speech pathologist, or other allied health professional). Prior to starting the intervention parents are asked to identify a target situation that involves uncertainty through which they will practise the strategies learned with their child. Intervention sessions include understanding the nature of intolerance of uncertainty (IU), different strategies to flexibly manage IU across a variety of settings, and recognising developmental and environmental triggers of IU. Sessions by week include getting to know each other (week 1), understanding uncertainty (week 2), learning about the zone (week 3), practising strategies using visual stories (week 4), practising strategies using play (week 5), using strategies in a real life situation (week 6), conducting an experiment (week 7), reflecting and evaluating (week 8). During each of these sessions, weekly home activities are set for caregivers to complete with their child and consist of completing a one page diary (included with the CUES© manual) to document uncertain situations during the week which cause their child difficulty and their response/strategy to manage this. At the end of the programme, and at follow-up, parents will be asked to evaluate their ability to manage their child's responses to situations of uncertainty in their chosen target situations (primary outcome). Fidelity to the manualised intervention will be assessed through checking random sessions with a fidelity checklist, completed at the end of the trial.
Sponsors
Study design
Eligibility
Inclusion criteria
(a) Parents/caregivers of a child aged between 4 and 7 years of age; (b) Parents/caregivers of a child diagnosed with an Autism Spectrum Disorder (confirmed with diagnostic documentation); (c) Parents/caregivers of a child who experiences some anxiety or distress in unfamiliar situations or environments, or routines; (d) Parents/caregivers who speak and read sufficient English to: (i) understand the requirements of the study to provide informed consent and complete questionnaires, and (ii) participate fully in the therapy sessions.
Exclusion criteria
(a) The child has a diagnosed complex co-occurring medical or health condition that may preclude full participation in home activities or in implementation of behavioural strategies; (b) The child has profound intellectual disability that requires significant functional supports; (c) The family does not intend to remain living in the Perth area for the following 8 months; (d) Any active court proceedings or special care arrangements (e.g., children in care of the state or situations where there is not a consistent, long-term caregiver) that may impact on participation in the study. (e) The parent has a serious mental health or other condition that, at the time of the intervention, causes significant distress and or impairment/ impact on parenting and family life, and which would make it difficult for them to access the intervention or to implement the intervention