Journal
JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES
Volume 31, Issue 5, Pages 792-803Publisher
WILEY
DOI: 10.1111/jar.12433
Keywords
children and young people; ethnography; healthcare; hospital; intellectual disabilities
Categories
Funding
- Great Ormond Street Hospital Children's Charity
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BackgroundThe 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. MethodAn ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting. ResultsFive 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. ConclusionsIt 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.
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