Deciding about research on behalf of someone else: the DECISION study
The only way to beat conditions such as dementia is through research. However, some people may be unable to make their own decision about whether to take part in a research study due to problems with their memory or understanding. When someone is unable to decide, their family and friends may be involved in making a decision on their behalf.
We know that making decisions on behalf of another person can be difficult, and sometimes help and support is needed.
What are the main aims of the study?
We hope to improve understanding about how family members and friends make decisions about whether the person they care for should take part in a research study or not. To do so, we would like to interview family members/friends who have been involved in making a decision about research on behalf of another person. The interviews will explore how such decisions are made, and what information is helpful for people making decisions, in order to design a way of supporting family members/friends.
What does it involve for a participant?
Participants will be asked to take part in an interview with a researcher. The interview will take about an hour and can take place at a time and place that is convenient, which can be the participant’s home. The interviews will be audio-recorded (with permission). Participants will be offered vouchers equivalent to £15 as a thank-you for their time.
What do you hope the outcomes of the study will be?
The study will help us understand how decisions about research are made, and to develop a tool which can help people make informed decisions. This tool could be used to support family members/friends in the future, when deciding about whether the person they care for should take part in a research study. It may also improve decisions made about taking part in studies to help improve future dementia care and treatment, as well as other conditions associated with memory and understanding problems.
Who can take part? (eligibility criteria)
We are looking for family members/friends of people with dementia (or another condition that affects their ability to make decisions) who have made decisions on their behalf about taking part in a research study (or not to take part). This decision should have been in the previous 12 months or so. They also need to be able to understand English well enough to understand the study information and take part an in-depth interview in English.
Where is the study based?
The study is based at Cardiff University but we are recruiting throughout England and Wales.