Obtaining consent to participate in research: the issues involved in including people with a range of learning and communication disabilities

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Abstract

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Title: Saying ‘yes’ or ‘no’ to research

  •  People with learning disability should get the chance to say ‘yes’ or ‘no’ to taking part in research.
  •  This can be hard if you have difficulty in understanding or speaking.
  •  This paper is about how we tried to find ways to help people understand and say what they felt about taking part in research.
  •  We found:
    • people with learning disability need more time to make decisions about research
    • researchers need to be good at communicating and getting to know people
    • researchers need to use different ways to communicate – not just speech

Summary

Research in the field of learning disability presents particular ethical challenges when obtaining consent from participants. This is further exacerbated when the nature of the research requires participation at all ability levels and involves people with communication impairments. The process of obtaining consent in a research study with 48 participants at four levels of comprehension ability is discussed in this paper. The specific issues of recruitment, seeking consent, ongoing consent and feedback are detailed as are the adaptations made in this project to research methodology and the accessible methods of communication employed. Implications for researchers and future directions for further studies are presented.

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