Centre for Trials Research, College of Biomedical & Life Sciences, Cardiff University: Family members’ experiences of informed consent and proxy decision making for research involving adults lacking capacity

14 February 2018
Source: University of Cardiff

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Around 2 million people in the UK have significantly impaired mental capacity due to neurodegenerative conditions such as dementia, acute medical emergencies such as stroke, or associated with learning or intellectual disabilities. 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, but making decisions on behalf of another can be difficult and can be experienced as a burden.

Qualitative interview study

The DECISION Study is a qualitative interview study exploring family members/friends’ experiences of being involved in decisions about research, made on behalf of an adult who has impaired decision-making capacity. We will be interviewing 20-25 people in England and Wales who have been involved in such decisions (in the last year) about their experiences. This will include relatives or close friends of those with dementia or other similar conditions, profound learning or intellectual disabilities, or other conditions that affect the ability to make decisions either temporarily or for the longer term.

For the full information and to be involved please go to the Centre for Trials Research website

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