“It Was Kind of Scary”: The Experiences of Children and Young People with an Intellectual Disability of Undergoing Clinical Procedures in Healthcare Settings

Background: Children and young people with an intellectual disability are among the most frequent visitors to healthcare settings where they undergo clinical procedures that can be painful and invasive. There is currently little empirical evidence to investigate how clinical procedures are experienced by children and young people with an intellectual disability and their parents. Methods: This ongoing study has adopted a qualitative research design underpinned by Classic Grounded Theory methodology. To date, 26 semi-structured interviews have been conducted with a convenience sample of children and young people who have a mild to moderate learning disability and are between the ages of 6-15 (n=11) and their parents (n=15). Results: Preliminary data analysis suggests that children/young people and their parents often feel worried and upset before and during clinical procedures. Children/young people report that they dislike being physically held still for procedures and that they prefer to be told about what will happen before a procedure takes place. Parents report other factors which contribute to the worry that they and/or their child experiences such as prolonged waiting periods and unclear communication between themselves and healthcare practitioners. Conclusions: Clinical procedures are challenging events for children and young people with intellectual disabilities and their parents. Where possible, practitioners should aim to make reasonable adjustments that respond to the concerns of children and young people and parents as highlighted by this study.