What to tell and how to tell: a qualitative study of information sharing in research for adults with intellectual disability
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Medical Ethics 34 (6):501-506 (2008)
Objectives: To explore opinions and attitudes regarding the current information-giving practices in research involving adults with intellectual disabilities.Design: Qualitative focus group study with a purposive sample.Setting: An intellectual disabilities service within the NHSParticipants: A sample of 26 individuals including adults with mild intellectual disability, carers, clinicians, care managers and the charitable sector.Results: Three main themes were identified: process, format, and content. There was agreement that there is a need for improvement in the process and quality of information giving. With regard to the content of information, there was little discrepancy between the study findings and existing guidance.Conclusions: Information should be presented in different formats and prepared with input from appropriate professions. Additionally the roles of peers, carers and other professionals in the process of information giving should be considered
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
C. J. McAllister, C. L. Kelly, K. E. Manning & A. J. Holland (2013). Participant Experience of Invasive Research in Adults with Intellectual Disability. Journal of Medical Ethics 39 (9):594-597.
Joe Giffels (2010). Sharing Data is a Shared Responsibility. Science and Engineering Ethics 16 (4):801-803.
Mei-Fang Chen & Ya-Hui Yen (2011). Costs and Utilities Perspective of Consumers' Intentions to Engage in Online Music Sharing: Consumers' Knowledge Matters. Ethics and Behavior 21 (4):283 - 300.
David Shoemaker (2009). Responsibility and Disability. Metaphilosophy 40 (3-4):438-461.
Yu-Shan Chen (2008). The Positive Effect of Green Intellectual Capital on Competitive Advantages of Firms. Journal of Business Ethics 77 (3):271 - 286.
Daniela Mercieca & Duncan Mercieca (2010). Opening Research to Intensities: Rethinking Disability Research with Deleuze and Guattari. Journal of Philosophy of Education 44 (1):79-92.
Sonali K. Shah & Kevin G. Corley, Building Better Theory by Bridging the Quantitative-Qualitative Divide.
Justin B. Biddle (2012). Tragedy of the Anticommons? Intellectual Property and the Sharing of Scientific Information. Philosophy of Science 79 (5):821-832.
María G. Navarro (2013). Review of A History of Intelligence and 'Intellectual Disability': The Shaping of Psychology in Early Modern Europe by C. F. Goodey. [REVIEW] Seventeenth-Century News 71 (1 & 2).
Doris Schroeder & Eugenijus Gefenas (2011). Realizing Benefit Sharing – the Case of Post-Study Obligations. Bioethics 26 (6):305-314.
Elizabeth Barnes (2009). Disability, Minority, and Difference. Journal of Applied Philosophy 26 (4):337-355.
Joan E. Sieber (1991). Openness in the Social Sciences: Sharing Data. Ethics and Behavior 1 (2):69 – 86.
Adedayo O. Adeyemi & M. H. Ayegboyin (2005). The Use of Information and Communication Technologies for Providing Access to HIV/AIDS Information Management in a Resource-Poor Country. International Corporate Responsibility Series 2:393-400.
Jeffrey P. Brosco (2010). The Limits of the Medical Model : Historical Epidemiology of Intellectual Disability in the United States. In Eva Feder Kittay & Licia Carlson (eds.), Cognitive Disability and its Challenge to Moral Philosophy. Wiley-Blackwell 26--54.
Added to index2010-08-24
Total downloads10 ( #337,070 of 1,907,660 )
Recent downloads (6 months)1 ( #463,516 of 1,907,660 )
How can I increase my downloads?