Family members are often involved in making decisions on behalf of a loved one who is unable to make decisions for themselves, even with support. It may be because the person has dementia, or severe learning disabilities, or following a sudden event like a stroke or critical illness. Research involving people who are unable to decide for themselves is important so that their care and treatment can be improved. However, families can find it difficult to decide whether they should take part in a research study or not, and they are often excluded from research.
Researchers from Cardiff University are exploring how decisions are made by families about whether someone who is unable to provide consent for themselves should take part in a research study. Previous research has looked at how families make decisions about the treatment and care provided for the person, but very little has looked at decisions made about research, which can be very different.
Funded by Health and Care Research Wales, the DECISION Study will look at family members' experiences of deciding about research on behalf of someone else, including how such decisions are made, and what information is helpful for people making decisions, in order to design a way of supporting family members to make an informed decision.
Victoria Shepherd, from the School of Medicine at Cardiff University, said: "Deciding whether a loved one should take part in a research study or not can be difficult. Wondering whether it is the best thing to do can leave families feeling uncertain. This study hopes to understand better how decisions like these are made, and what support or information would help family members making a decision in the future."
The study is looking for family carers who have made a decision about whether the person they care for should take part in a research study. The aim is to interview carers to understand how decisions like this are made. This decision should have been in the previous 12 to 18 months. An interview takes about an hour and can take place at a time and place that is convenient, such as the person's home.
The study is recruiting across the whole of Wales and England. For more information, please contact Victoria Shepherd at firstname.lastname@example.org or 02920687641.