Capacity and Communication
Learn how to recognise and support different capacity and communication needs when involving adults in research. This section explains how to identify individuals who may need adjustments, when to seek a consultee’s advice, and how to assess capacity to ensure ethical, inclusive research practices.
Understanding Capacity and Communication Needs
When including individuals in research, it is important to recognise how cognitive and communication difficulties may affect their ability to make and communicate decisions. The following three groups illustrate different needs for adjustments, supports and consent.
Individuals with communication difficulties but no cognitive difficulties affecting decision-making
- They can make informed decisions about participating in research.
- They may require appropriate adjustments and supports to enable autonomous decision-making, such as accessible information, communication aids or extra time.
- Communication difficulties alone should not be taken as evidence of a lack of capacity.
Individuals with cognitive and/or communication difficulties who retain decision-making capacity
- They retain the ability to make informed decisions about their participation, although they may experience difficulties processing, retaining or communicating information.
- They may need adjustments and supports to help them understand the research, weigh up the information and express their choices.
- Appropriate support can help individuals use their existing abilities to make autonomous decisions.
Individuals with cognitive and/or communication difficulties who lack capacity for a specific research decision
- Despite appropriate adjustments and supports, they are unable to make an informed decision about participation in the particular research study.
- In these cases, a personal or nominated consultee must be consulted, in accordance with the Mental Capacity Act (2005), 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 informed consent independently.
- The person's wishes and feelings, including expressions of assent or dissent, must continue to be considered and respected.
Assessing Capacity
If there is reason to doubt an individual's capacity to give informed consent, a decision-specific assessment should be carried out in the context of the particular research study, after appropriate adjustments and supports have been provided.
Capacity should not be assumed to be absent because someone has a cognitive or communication difficulty. It can vary depending on the decision being made, the complexity of the information, the support available and the person's circumstances at the time.