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Family members’ experiences of informed consent and proxy decision making for research involving adults lacking capacity.


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.

Proxy decisions

These semi-structured interviews aim to find out how ‘proxy’ decisions are made and what information is helpful for family members and friends when making decisions about research participation. Interviews will be audio-recorded with permission. Thematic analysis will be used to identify key themes and allow an in-depth understanding of family members/friends’ experiences, in order to develop a theoretical (ethical) framework, and develop and tailor future supportive interventions.

Decision support instrument

The DECISION Study forms part of an NIHR Doctoral Research Fellowship funded by the Welsh Government through Health and Care Research Wales. The ultimate aim of the project is to develop a decision support instrument (DSI) which is a tool used to help people make choices by providing information about the options and outcomes that are important to the person. This could be used by people acting as proxies in the future when deciding about whether a person lacking capacity should take part in a research study, in order to support informed decision making.


Key facts

Start date 1 Nov 2017
End date 1 Nov 2018
Grant value £266,485
  • Recruiting

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