Our IMAGINE research program (2015-2020), funded by the MRC, recruited a cohort of 3,000 children with intellectual disability (ID) associated with rare genetic conditions. These children were substantially more likely to have a diagnosable mental health condition compared with typically developing children (TD) in the UK. Our current follow-up study (2020-2025) suggests that these mental health concerns persist over time and that few families have received appropriate support.
Evidence-based preventive interventions exist, but there is an implementation gap. The needs of this population are not being met. We would like to develop a digital intervention to support families caring for a child with rare genetic disorders with anxiety or behavioural difficulties.
Our project aims to (1) adapt evidence-based interventions to be suitable for IMAGINE families, using co-production methodology and (2) gather acceptability and feasibility data on the impact of novel methods of delivery, using digital intervention.
Progress Update: Focus groups with families are professionals completed. Article under preparation for submission.
Jeanne Wolstencroft 