Being a child with intellectual disabilities in hospital: The need for an individualised approach to care

Author:

Oulton Kate12ORCID,Gibson Faith12,Kenten Charlotte3,Russell Jessica2,Carr Lucinda4,Hassiotis Angela5,Kelly Paula2,Kerry Sam2,Tuffrey‐Wijne Irene6ORCID,Whiting Mark7,Wray Jo2

Affiliation:

1. School of Health Sciences University of Surrey Guildford UK

2. Centre for Outcomes and Experience Research in Children's Health, Illness and Disability Great Ormond Street Hospital for Children NHS Foundation Trust London UK

3. Marie Curie Palliative Care Research Department, Division of Psychiatry University College London London UK

4. Great Ormond Street Hospital for Children NHS Foundation Trust London UK

5. UCL Division of Psychiatry University College London London UK

6. Faculty of Health Social Care & Education London UK

7. Centre for Research in Public Health and Community Care University of Hertfordshire Hertfordshire UK

Abstract

AbstractBackgroundThere is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence‐base being about those with Autism Spectrum Condition or adults with intellectual disabilities.AimTo share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective.MethodsTalking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in‐depth interviews, hospital diaries and photography with their parents.Results and ConclusionsThe multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed.

Funder

National Institute for Health and Care Research

Publisher

Wiley

Subject

Developmental and Educational Psychology,Education

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