Literature DB >> 18511628

What to tell and how to tell: a qualitative study of information sharing in research for adults with intellectual disability.

D Andre-Barron1, A Strydom, A Hassiotis.   

Abstract

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 NHS PARTICIPANTS: 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.

Entities:  

Mesh:

Year:  2008        PMID: 18511628     DOI: 10.1136/jme.2006.019521

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  3 in total

1.  What's the Harm? Harms in Research With Adults With Intellectual Disability.

Authors:  Katherine E McDonald; Nicole E Conroy; Robert S Olick; The Project Ethics Expert Panel
Journal:  Am J Intellect Dev Disabil       Date:  2017-01

2.  Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities.

Authors:  Teresa A Savage; Teresa Thalia Moro; Jackelyn Y Boyden; Allison A Brown; Karen L Kavanaugh
Journal:  Appl Nurs Res       Date:  2014-10-13       Impact factor: 2.257

3.  "You can't be cold and scientific": community views on ethical issues in intellectual disability research.

Authors:  Katherine E McDonald; Nicole M Schwartz; Colleen M Gibbons; Robert S Olick
Journal:  J Empir Res Hum Res Ethics       Date:  2015-03-13       Impact factor: 1.742

  3 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.