Understanding and addressing IU in children with ASD and ID
Research type
Research Study
Full title
Understanding and addressing Intolerance of Uncertainty in children with ASD and intellectual disability: Adaptation and evaluation of Coping with Uncertainty in Everyday Situations (CUES).
IRAS ID
236354
Contact name
Jessica Maxwell
Contact email
Sponsor organisation
Northumberland, Tyne and Wear NHS Trust
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Anxiety is common in individuals with Autism Spectrum Disorder (ASD), and can cause distress for the individual and their family. Research suggests that individuals with ASD find uncertain situations particularly distressing, this is sometimes called Intolerance of Uncertainty, or IU.
To tackle intolerance of uncertainty and anxiety in children with autism we have devised an intervention programme for parents to attend called Coping with Uncertainty in Everyday Situations (CUES). Parents participate in CUES by attending 8 two-hour group sessions along with other parents and two therapists.
In our previous study, parents told us that the programme was acceptable to them and feasible for them to attend. However, our previous study did not include parents of children with ASD who also have intellectual disability (ID, or learning disability).
Many people with ASD also have an intellectual disability (approximately 50%), so we now want to check that CUES is acceptable and feasible for these families too.
Our project aims to pilot an adapted version of CUES for delivery to two groups of 4-6 parents with children with ASD and ID, in order to assess acceptability and feasibility. We will ask parents to attend the group sessions and take a range of measures of child and parent mental health and wellbeing at the beginning and the end of the intervention and then some months afterwards. We will also interview parents about what they thought about the adapted CUES programme.REC name
South Central - Hampshire B Research Ethics Committee
REC reference
18/SC/0082
Date of REC Opinion
16 Feb 2018
REC opinion
Further Information Favourable Opinion