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ERIC Number: EJ1012742
Record Type: Journal
Publication Date: 2013-May
Pages: 12
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: N/A
Developing Guidelines for Disclosure or Non-Disclosure of Bad News around Life-Limiting Illness and Death to People with Intellectual Disabilities
Tuffrey-Wijne, Irene; Giatras, Nikoletta; Butler, Gary; Cresswell, Amanda; Manners, Paula; Bernal, Jane
Journal of Applied Research in Intellectual Disabilities, v26 n3 p231-242 May 2013
Background: There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim: 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. Materials and methods: Focus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals. Results: 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. Conclusion: 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. (Contains 4 figures.)
Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: United Kingdom (England)
Grant or Contract Numbers: N/A