What is FACTOR and how does it involve carers in research?

Geraldine Mason: FACTOR is an acronym – unfortunately – and it stands for Families, Friends and Carers Together in Research, so it’s a carer involvement project, and we get mental health carers together to take part in advising on research...they can be consulted on research, they will advise researchers, they’ll tell researchers what it’s like being a carer, they will edit documents, they will advise on the research question itself, which is often something that users and carers need to do so the research question becomes much more relevant to the needs of service users and carers.

There are very practical issues, like where you can find service users, improving recruitment, making the research more understandable so that people will want to take part in it, and making it more understandable to carers so that carers will be encouraging for their service user to take part in research.

Most of what people do doesn’t really require research knowledge, it’s more like commenting on what researchers are proposing, and usually it’s not about the research method or the design, that’s not usually the problem, the problem is more like the researchers’ misconceptions, researchers’ inaccurate ideas about what it’s like to be a service user.

You need to be a carer of some description but usually all that means is that you are their relative or you are their friend, or you could be a neighbour, or you could be a good Samaritan actually, you could just be somebody who’s taken somebody under their wing and is supporting them.

What happens when they join is by and large they see our details somewhere and they get in touch with us, we send them an application form. I talk to them on the phone about what their interests are, where they are, what sort of time they’ve got, what they’ve done before and what they are interested in, and that’s to sort of get a picture of what they’d like to do, then I talk to them about what we do and where we might fit together, and we sort of go from there.

We get people who haven’t got time to be involved on a regular basis but if I get in touch with people and say we’re doing a consultation in south London and it’s on – and I give a date – and it’s a one off consultation, then a lot of people will come forward who otherwise don’t have time to be involved and that’s great.

To find more about FACTOR, visit the National Institute for Health Research Mental Health Research Network website, or ring Geraldine Mason on 020 7848 0643.