Making our own decisions: researching the process of ‘being informed’ with people with learning difficulties

Historically people with learning difficulties have been either included in research without their consent or excluded from research that affects their treatment and care. Over the last 20 years, however, it has been recognised that to exclude the voice of people with learning difficulties (and other so called vulnerable groups) in research that reflects their lived experiences challenges our notion of ethical practice. Cognitive ability has traditionally been one of the key factors in determining ability to consent. This paper identifies, through work with a group of men with learning difficulties, the impact of different ways of presenting information to prospective participants on their ability to understand key issues in relation to participation in research and hence their ability to give informed consent.