Co-producing an ACT and PBS group for parents of children with ID
Research type
Research Study
Full title
Development of a co-produced acceptance and commitment therapy and positive behaviour support group for parents of children with intellectual disabilities: A mixed methods study.
IRAS ID
343687
Contact name
Lilianne Bills
Contact email
Sponsor organisation
University of Edinburgh
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 7 months, 31 days
Research summary
Children and young people with intellectual disabilities (CYP-ID) have difficulty understanding new or complex information, learning new skills, and doing everyday tasks (e.g., self-care). CYP-ID are also more likely to have behaviours that challenge (e.g., hurting themselves or others), which are known to negatively affect their quality of life (QoL) and that of their parents. Parents of CYP-ID are generally more likely to experience stress, anxiety and depression compared to parents of children without ID.
One of the most widely used interventions for behaviours that challenge is Positive Behaviour Support (PBS). PBS involves working with the person with an ID, and the key people in their life, to reduce behaviours that challenge and improve QoL. However, PBS can be very difficult for parents to use on a regular basis, especially for those who are already experiencing psychological problems. Therefore, research is beginning to explore the usefulness of offering psychological support to parents alongside PBS. One promising example is acceptance and commitment therapy (ACT), which supports people to find ways of coping with their difficult thoughts and feelings, so that they can live in keeping with what is important to them.
This study aims to create a group for parents of CYP-ID that combines features of PBS and ACT. The group will be developed in partnership with parents of CYP-ID in a series of workshops in which they will review and give feedback on some of the group materials. The group will then be trialled with a different group of parents CYP-ID to see if it works well so that a bigger study can be planned in the future. Amongst other things, we will find out if parents are willing to take part in the research, if they attend most of the group sessions, and whether they find the group acceptable.
REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
24/EM/0219
Date of REC Opinion
7 Nov 2024
REC opinion
Further Information Favourable Opinion