We need to be confident that an individual, regardless of their mental capacity, is supported to understand and/or engage with information about our research in ways that are personally meaningful.
Including adults who may lack capacity and may have communication difficulties in research can present challenges to:
- The person invited to participate in a study;
- The researcher recruiting to a study;
- The reviewer of the study on a Research Ethics Committee.
This guidance advises on the use of strategic adjustments and supports to promote the participation of adults with communication difficulties, regardless of their mental capacity, in ethically-sound research.
Please watch the video below to explore the importance of the context in which a decision is made.
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Please watch this video which explores the importance of the context in which a decision is made.
Ahmed is a 45-year-old man diagnosed with MND 2 years ago. He lives with his partner, who is also his carer, in an adapted home. Ahmed uses a wheelchair for mobility and has limited use of his arms. They have no children.
Jean is a grandmother of 3. She and her husband have been married for 40 years and live in a small village. She mainly uses a wheelchair but can walk short distances with support. 
Charles is a 70-year-old retired biomedical scientist who lives alone and has paid carers to support him, as he feels worried about leaving his home. His house is increasingly cluttered and he is reluctant to get rid of anything including his stash of old magazines and post. In fact, he will introduce people to his collection and repeatedly tells his healthcare team and carers ‘you never know when you might need it’ during visits.
