Mental capacity and informed consent for research
Researchers at Cardiff University are carrying out a project looking at informed consent for research involving people who are unable to decide about taking part for themselves, such as those in the later stages of dementia. When someone is not able to provide their own consent, other people who know the person well are involved in the decision about whether they should take part or not. Doctors, nurses, care home staff, or social care practitioners are usually involved when these decisions involve care home residents taking part in research. However, these decisions can be complex, and those involved are sometimes concerned about how such decisions should be made, and what their role should be.
As part of the project, the researchers are conducting an online survey to look at health and social care professionals’ views and understanding of how decisions are made for people who are unable to provide their own informed consent for research. The results from the survey will help with the ultimate aim of the project, which is to develop ways of supporting informed consent for research involving adults who lack capacity, including those living in care homes.
The research team are keen to include all health and social care professionals who are involved in research in care homes, such as care home managers, care home staff, GPs, and those in research networks who approach and recruit residents to studies. The survey is open in England and Wales only, as different mental capacity law applies in Scotland.
The survey takes 10-15 minutes to complete, and you can download and keep a summary of the legislation covering proxy consent for research, and information about how the law applies to the scenarios used in the survey. So hopefully this will be an interesting, informative and useful experience for those kindly agreeing to take part!
All views are very important to us. If you would like to take part, the survey can be found at:
If you have any questions about the survey, or would like more information about the project, please contact me: Victoria Shepherd, NIHR Doctoral Research Fellow, Cardiff University ShepherdVL1@cardiff.ac.uk or telephone 029 2068 7641.
This project is part of an NIHR Fellowship funded by Health and Care Research Wales.
author: Victoria Shepherd, NIHR Doctoral Research Fellow, Cardiff University