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


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.

  • research ethics
  • qualitative research
  • mental retardation
  • informed consent
  • focus groups

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