Survey: Deciding for others - informed consent and decision making for research involving people without capacity

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Deciding for others - informed consent and decision making for research involving people without capacity

At Cardiff University we are conducting a study 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, which may include those who have intellectual and developmental disabilities, or a condition resulting in cognitive impairment.

We are keen to include a wide range of health and social care professionals who are involved in research involving people with IDD, such as clinicians, psychologists, Allied Health Care professionals, and social care practitioners. The findings from the survey will help with the ultimate aim of the project which is to develop an intervention to support informed consent for research involving adults who lack capacity.

We are limiting the survey to those in England and Wales only as the mental capacity legislation is different in Scotland and NI. The survey takes 10-15 minutes to complete, and participants are able to download and keep a summary of the legislation governing 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!

The survey can be found at https://cardiff.onlinesurveys.ac.uk/pilot-healthcare-professionals-understanding-of-legislat

All views are very important to us. If you have any questions, or would like more information about the study, please contact Victoria Shepherd, Cardiff University ShepherdVL1@cardiff.ac.uk

Best wishes,

Vicky

Victoria Shepherd
NIHR Doctoral Research Fellow
Division of Population Medicine, & Centre for Trials Research
Cardiff University
5th Floor, Neuadd Meirionnydd
Heath Park
Cardiff
CF14 4YS