Regardless of the individual’s ability for autonomous decision-making, we need to recognise the individual’s:

• interest in making decisions and acting voluntarily
• ability to understand and process information relating to these decisions.

We can think about how decision-making may vary over time in relation to the details of any decision and to the individual’s capacity over time, as a continuum of decision-making.

Views and Opinions

• By ‘supporting’ a decision we mean the actions and/or materials put in place to help the person to understand, retain, weigh up and communicate about the research.
• By ‘respecting’ a decision we mean adhering to the decision made by the individual.
• The individual’s wishes and feelings must be considered regardless of their capacity.
• There is a requirement to be sensitive to the participant’s responses even if consultee advice is that they would want to participate.

Continuum of Decision-Making and Engagement

Passive:

Minimal engagement: no observable or distinguishable response; extreme passivity. This cannot be taken as evidence of agreement to take part

Engaged:

Active engagement; observable and distinguishable response: positive expression of agreement for assent OR negative expression of disagreement for dissent

Informed:

Legal capacity to make an autonomous decision: understand relevant information; retain information; use and weigh up information; communicate decision

Joining efforts with others in order to achieve understanding as far as capacities allow for Active Engagement

Once positive advice from a consultee is in place, the reseacher organises opportunities for the participant to: connect with and recognise the research; to anticipate what the research means to them; and to communicate their engaged assent or dissent in relation to taking part.