19th December 2022

The challenges of research with adults with impaired capacity to consent

Help address the challenges of research with adults who are unable to provide consent

Research is essential in order to improve the treatment and care for people with conditions that affect memory or understanding, such as dementia or stroke. In order to include people in research who are unable to provide their own consent to participate, someone close to them is approached to help make a decision on their behalf.

However, family members that consented for their relative before expressed a concern that sometimes it is difficult to know what their wishes and feelings would be as it is rarely talked about.

Researchers from Cardiff University would like to develop ways to help people to express what their wishes about future research participation are in circumstances where they are unable to make their own decision, and who they would like to make a decision about research on their behalf. This will ensure that future decisions about research are based on their wishes and preferences.

Researchers are inviting individuals who are living with conditions that may affect their memory or understanding or have a friend or a relative who has such a condition, or other members of the public interested in this topic to participate in the survey to find out what they think about planning for research participation in advance.

CONSULT-ADVANCE study

CONSULT-ADVANCE study is exploring whether advanced research planning, expressing wishes about being involved in research should capacity be lost, is acceptable and feasible

There has been a growing focus on advanced care planning that provides people with the opportunity to discuss their future preferences about treatment and care should they be unable to decide for themselves. In the UK this does not currently include their preferences about research.

Researchers involved in research into capacity-affecting conditions such as stroke or dementia, research ethics committee members or other professionals interested in advanced planning for research are being invited to take part in this survey.

Further information can be found on the Cardiff’s Centre for Trials Research website. 

If you have any questions or at any time you would like to discuss this study, please contact the Principal Investigator Dr Victoria Shepherd.

Deadline: 28 February