About Down's Syndrome : Decision Study

Have you been involved in a decision about research on behalf of an adult relative or friend who was unable to decide for themselves? Do you live in England or Wales?

We are looking for participants to be interviewed about their experience of making decisions for a loved one to take part in a research study in the previous year.  The interview will take about an hour and can take place at a time and place that is convenient for you.

Background: Around 2 million people in the UK have impaired decision-making capacity. This may be associated with learning disabilities, due to acute medical emergencies, or conditions such as dementia. Research involving people who have impaired decision-making capacity raises ethical and practical challenges, including the need for others to be involved in the informed consent process. Relatives and friends are often asked to act as a ‘proxy’ or ‘surrogate’ for the person if they are unable to provide consent for themselves even when supported to do so. However, making decisions about research on behalf of another can be difficult and can be experienced as a burden. There is very little information about how family members/friends make such decisions, which factors are most important, and what support or information would be most helpful in these situations.

For further information, contact:

Victoria Shepherd

Email: ShepherdVL1@cardiff.ac.uk

Phone: 02920687641

DECISION Study Flyer V1.0 12.10.2017
DECISION Study Participant Information Sheet V1.1 25.09.2017
DECISION Study Postcard V1.0 12.10.2017

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