Skip to main content

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, 33 (2). pp. 283-295. E-ISSN 1468-3148. (doi:10.1111/jar.12672) (KAR id:77162)

PDF Author's Accepted Manuscript
Language: English
Download (876kB) Preview
[thumbnail of __files.kent.ac.uk_usersE_ecs33_Home_My Files_Specialist_hospital_treatment 26.07.2019 (1).pdf]
Preview
This file may not be suitable for users of assistive technology.
Request an accessible format
XML Word Processing Document (DOCX) Author's Accepted Manuscript
Language: English

Restricted to Repository staff only
Contact us about this Publication
[thumbnail of Specialist_hospital_treatment 26.07.2019.docx]
Official URL:
https://doi.org/10.1111/jar.12672

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.

Method - Semi-structured interviews with 23 participants comprising children (n=5) (aged 11-16) with intellectual disabilities, their parents (n=9) and healthcare professionals (n=9) working in cleft care. Thematic Analysis determined patterns across the data.

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: Divisions > Division for the Study of Law, Society and Social Justice > 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 Dec 2022 04:44 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/77162 (The current URI for this page, for reference purposes)
McCarthy, Michelle: https://orcid.org/0000-0003-1358-2516
  • Depositors only (login required):

Downloads

Downloads per month over past year