“LEARN”ing what is important to children and young people with intellectual disabilities when they are in hospital

Abstract

Background: The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital-related needs and experiences of CYP with intellectual disabilities. Method: An ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting. Results: Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital: (i) little things make the biggest difference, (ii) eliminate unnecessary waiting, (iii) avoid boredom, (iv) routine and home comforts are key and (v) never assume. Conclusions: It is imperative that the present authors continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate.