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Specialist hospital treatment and care as reported by children with intellectual disabilities and a cleft lip and/or palate, their parents and healthcare professionals

Bates, Amanda, Forrester-Jones, Rachel, McCarthy, Michelle (2019) Specialist hospital treatment and care as reported by children with intellectual disabilities and a cleft lip and/or palate, their parents and healthcare professionals. Journal of Applied Research in Intellectual Disabilities, . E-ISSN 1468-3148. (doi:10.1111/jar.12672)

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Abstract

Background - Research into hospital treatment and care of children with intellectual disabilities (IDs) is extremely limited but available literature points to difficulties. Some children have a co-occurring condition alongside an ID which requires ongoing treatment, such as a cleft lip/palate. To date, their experiences remain untapped.

Results- Three key themes were found; struggles (stress and distress, power imbalance) tensions (perceived levels of choice and control in decision-making, lack of training around IDs assumptions and jargon) and good practice (appropriate communication and information, tailored treatment).

Conclusion - Good practice was evident, but was ad-hoc. Individualised treatment and communication based upon children’s needs is required as is further investigation into general anaesthetic induction for children with IDs.

Item Type: Article
DOI/Identification number: 10.1111/jar.12672
Uncontrolled keywords: Children, intellectual disabilities, cleft, healthcare, hospital
Subjects: H Social Sciences
Divisions: Faculties > Social Sciences > School of Social Policy Sociology and Social Research > Centre for Health Services Studies
Depositing User: Meg Dampier
Date Deposited: 08 Oct 2019 15:48 UTC
Last Modified: 09 Oct 2019 15:23 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/77162 (The current URI for this page, for reference purposes)
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