Helping Families Make Decisions about Research Participation for Loved Ones

Researchers at Cardiff University are exploring whether advance research planning – a process where you can express your wishes about being involved in research studies in the future - is acceptable and feasible.

What is the study about?

When someone who has had a stroke or a similar condition is unable to make their own decisions about taking part in a research study, their families may be asked to decide on their behalf.

However, some family members do not know what the person’s wishes and preferences about research would be and they can find it difficult to make a decision.

Introducing advance research planning could enable family members to make more informed decisions about research, reduce the burden on families making these decisions, and ensure that people have the opportunity to take part in and benefit from research.

What will it Involve?

Participants are asked to complete this online survey. The survey takes approx. 10 minutes to complete.

You will also have the opportunity to tell us if you would like to take part in an interview for the next stage of the project.

Who can take part?

We would like to hear the views of stroke survivors, people living with other conditions that may affect their memory and understanding, their family members and friends, and other people who are interested in research into these conditions.

Anyone interested in the topic can take part - including people living with conditions that may affect their memory and understanding, their family members and friends, and other members of the public.