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J Med Ethics 2008;34:501-506 doi:10.1136/jme.2006.019521
  • Research ethics

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

  1. D Andre-Barron1,
  2. A Strydom2,
  3. A Hassiotis1
  1. 1
    Department of Mental Health Sciences, Royal Free and University College London Medical School, London, UK
  2. 2
    Department of Mental Health Sciences, Hampstead Campus, London, UK
  3. 3
    Department of Mental Health Sciences, Bloomsbury Campus, London, UK
  1. D A Barron, Department of Mental Health Sciences, Royal Free and University College London Medical School, Charles Bell House, 67 Riding House Street, London WIW 7EY, UK; rejudra{at}ucl.ac.uk
  • Received 13 October 2006
  • Revised 15 June 2007
  • Accepted 24 June 2007

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.

Footnotes

  • Funding: Camden and Islington Mental Health and Social Care Trust funded DAB’s post as Research SHO.

  • Competing interests: None.

  • Ethics approval: Ethical approval for the project was given by the Camden & Islington Conmunity Local Research Ethics Committee.

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