What to tell and how to tell: a qualitative study of information sharing in research for adults with intellectual disability.
OBJECTIVE
To explore opinions and attitudes regarding the current information-giving practices in research involving adults with intellectual disabilities.


METHODS
Qualitative focus group study with a purposive sample.


METHODS
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.
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@ucl.ac.uk
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Andre-Barron
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Strydom
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Hassiotis
D017028:Caregivers; D032984:Ethics, Research; D017144:Focus Groups; D006801:Humans; D007258:Informed Consent; D008131:London; D016743:Mental Competency / Q000331:legislation & jurisprudence*; D010353:Patient Education as Topic / Q000941:ethics / Q000379:methods*; D019989:Persons with Intellectual Disabilities / Q000331:legislation & jurisprudence / Q000523:psychology*; D036301:Qualitative Research; D015203:Reproducibility of Results; D012720:Severity of Illness Index