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What are families’ experiences of acting as a consultee or representative for someone who lacks capacity to consent for research?

People may be unable to make their own decision about whether to take part in a research study due to impaired mental capacity. Therefore, family and friends may be involved in the decision making on their behalf, which can be challenging.

The DECISION Study is a qualitative interview study to explore family members’ experiences of acting as a research consultee or legal representative for someone who lacks capacity to consent for research; and the research team are looking for people to take part. The study is open to all those in England and Wales who have decided about whether a family member who lacks capacity to consent should or should not take part in a research study in the last 18 months.

People may be unable to make their own decision about whether to take part in a research study due to impaired mental capacity. Therefore, family and friends may be involved in the decision making on their behalf, which can be challenging.

The DECISION Study is a qualitative interview study to explore family members’ experiences of acting as a research consultee or legal representative for someone who lacks capacity to consent for research; and the research team are looking for people to take part. The study is open to all those in England and Wales who have decided about whether a family member who lacks capacity to consent should or should not take part in a research study in the last 18 months.

The aim of the study is to explore how such decisions are made and what factors are involved - in order to develop a tool to support informed decision making in the future.

To find out more visit news.joindementiaresearch.nihr.ac.uk/decision-study/ and www.cardiff.ac.uk/centre-for-trials-research/research/studies-and-trials/view/decision

Contact: Chief Investigator, Victoria Shepherd shepherdVL1@cardiff.ac.uk

author: Andrea Fisher

Written by Andrea Fisher on Tuesday February 27, 2018

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