Developing Guidelines for Disclosure or Non‐Disclosure of Bad News Around Life‐Limiting Illness and Death to People With Intellectual Disabilities. Issue 3 (12th April 2013)

• Record Type: Journal Article
• Authors: Tuffrey‐Wijne, Irene; Giatras, Nikoletta; Butler, Gary; Cresswell, Amanda; Manners, Paula; Bernal, Jane
• Is Part Of: Journal of applied research in intellectual disabilities. Volume 26:Issue 3(2013:May)
• Page Start: 231
• Page End: 242
• Publication Date: 2013-04-12
• Subjects: Learning disabilities -- Periodicals; Mental retardation -- Periodicals; Learning disabled -- Periodicals; People with mental disabilities -- Periodicals; 616.85880072
• DOI: 10.1111/jar.12026
• Languages: English
• ISSNs: 1360-2322

Abstract

<abstract abstract-type="main" id="jar12026-abs-0001"> <title> <x xml:space="preserve">Abstract</x> </title> <sec id="jar12026-sec-0001" sec-type="section"> <title>Background</title> <p>There is insufficient evidence to guide decisions around (non‐)disclosure of bad news of life‐limiting illness and death to people with intellectual disabilities.</p> </sec> <sec id="jar12026-sec-0002" sec-type="section"> <title>Aim</title> <p>The aim of this study was to develop guidelines for decisions about (non‐)disclosure of bad news around life‐limiting illness and death to people with intellectual disabilities, by examining stakeholders' preferences (and reasons) around disclosure and non‐disclosure.</p> </sec> <sec id="jar12026-sec-0003" sec-type="section"> <title>Materials and methods</title> <p>Focus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals.</p> </sec> <sec id="jar12026-sec-0004" sec-type="section"> <title>Results</title> <p>People with intellectual disabilities had wide‐ranging views about disclosure. Reasons for non‐disclosure included: preventing distress; too difficult for the bearer of bad news; the bearer of bad news lacks knowledge; inability to understand; no sense of time; conflicting views among stakeholders. Reasons for disclosure included: a right to know; knowledge helps the person cope; need for involvement.</p> </sec> <sec id="jar12026-sec-0005" sec-type="section"> <title>Conclusion</title> <p>Disclosure of bad news could cause harm in some situations, but this needs careful assessment. The authors present guidelines for disclosure that now need to be tested in practice.</p> </sec> </abstract>