Understanding Capacity and Communication Needs

When including individuals in research, it is important to consider three main groups, each with specific needs for support and consent:

Individuals with communication difficulties that do not affect capacity

• They can make informed decisions about participating in research.
• They require appropriate adjustments and supports to enable autonomous decision-making, such as accessible information, communication aids, or extra time.

Individuals with cognitive and/or communication difficulties that do not affect capacity

• They retain the ability to make informed decisions about their participation.
• They also need adjustments and supports to ensure they can fully understand information and express their choices.

Individuals with cognitive and/or communication difficulties that do affect capacity

• They are unable to make an informed decision about research participation themselves.
• In these cases, a consultee (personal or nominated) must be consulted to advise on the person’s likely wishes and feelings regarding participation.
• Adjustments and supports should still be provided to maximise the person’s engagement in the process, even if they cannot give consent independently.

Assessing Capacity

If there is any doubt about an individual’s capacity to give informed consent, an assessment must be carried out in the context of the specific research project. Capacity can vary depending on the complexity of the decision and the information-processing demands involved.