This week I met up with a total stranger to talk over my feelings about suicide. I described my experiences of suicidal thoughts and the overdose I took during my 2001 episode, and explained what I believe helps suicidal people and what, in my view, doesn’t.
You might wonder why on earth I would want to do this. What would make me want to relieve what must, by definition, have been the most painful periods of my life, let alone recount them to a stranger? Well, Karen is working on a Suicide Prevention Benchmarking Project which aims to reduce to reduce the rate of suicide in the NHS South Central (Oxfordshire, Buckinghamshire, Berkshire, Hampshire and Wessex). In order to start this process, she is collecting service users’ and carers’ experiences of intervention and support, both good and bad, in order to draw up recommendations for mental health professionals. And it’s my belief as a service user that if researchers are asking for our lived experiences, we should take the opportunity to be heard.
Which means that this is by no means the first research project I have been involved with. I have, in fact, lost count. I have filled in paper questionnaires and online surveys; I have participated in face-to-face and telephone interviews; I have sat through computer-based tests; I have even given blood. The studies I have taken part in have looked at everything from the biological basis of bipolar, to the relationship between bipolar and exercise, decision-making processes of people with a bipolar diagnosis, and the use of financial safeguards for those who experience mania. Bipolar, like most mental health conditions, is still somewhat poorly understood, so there are large numbers of studies out there trying to work who gets bipolar and why, and how best to deal with it. Some studies involve lab-based research, looking at our very genes and the structure of our brains; others aim to find out more about how bipolar affects people’s lives, and which interventions make the most difference.
I recently “met” Gerasimos Chatzidamianos, Senior Research Associate at the Spectrum Centre, on Twitter after the Centre’s work was featured on BBC R4’s Woman’s Hour. Based at Lancaster University, the Spectrum Centre specialises in psychological research into bipolar disorder and relies on bipolar people coming forward to participate in their studies. Gerasimos has kindly agreed to answer my questions, tell me a little more about the Centre’s work, and why people should consider getting involved.
How do you hope the Spectrum Centre’s work will help the bipolar community?
Led by Professor Steve Jones, Spectrum Centre was established approximately 5 years ago. The key goal has always been the development and testing of psychological interventions for people with mental health problems and their relatives. Compared with other mental health disorders, however, bipolar has traditionally been a relatively ignored diagnosis by the services. As such, our research primarily focuses on trying to understand people’s bipolar experiences, and what we can do to help them and those who support them.
One of the ways of putting this into practice is by ensuring that people with bipolar disorder are actively involved in our work either as formal employees or volunteers. Those employed by the Centre are called Service User Researchers and their role is to ensure that our research is conducted in ways that are sensitive to the complex needs of people experiencing bipolar disorder and of their relatives.
Over the years, Spectrum has also developed a database of people who took part in our research and have expressed their interest to be conducted again. This is called Spectrum Connect and participation is entirely voluntarily. There are currently approximately 500 people who have signed up in Spectrum Connect, including people with bipolar disorder, relatives, health professionals or lay people who are interested in our work. People in Spectrum Connect receive 4 newsletters per year with updates on our research, news about bipolar disorder, and free invitations to events and conferences that we organise. They are also the first ones to hear about an upcoming study.
It was Spectrum’s contribution to knowledge and to the bipolar community that has recently been recognized by the Ministry of Health, which selected Spectrum as the leading research Centre on bipolar in the UK to be part of the national initiative called Improving Access to Psychological Therapies for bipolar disorder. The main aim of this initiative is to ensure that people with bipolar disorder have better access to psychological therapies.
What do participants tell you they get out of participating in research?
Taking part in research is usually a very rewarding experience. This is what our participants often tell us, but this is also what I believe as well, having been a research participant myself numerous times. But, depending on the type of research people get different things. For instance, we conduct studies that involve a one-off interview with participants aiming to increase our understanding of their experiences in certain areas, what we call qualitative research. Taking part in such projects does not usually have a direct benefit from participating. If necessary, travel expenses are paid for. What people tell us, however, is that ‘If my experiences can help others… This is great!’ There is this sense of contributing to a wider good cause, contributing to knowledge.
Other projects may involve participants receiving free specialised psychological interventions. For instance, we currently have 4 studies that deliver some form of therapy to people with bipolar disorder or their relatives and which are actively looking for new people to take part. One is for people with bipolar and their relatives, one is a recovery focused intervention, there is an online intervention for bipolar parenting, and another online intervention that aims to improve relapse prevention. Depending on the study that one chooses to take part, they can receive up to 6 months therapy for free with a specialized therapist, or free access to self-help web-based interventions.
How many people with bipolar have been involved so far? And do you need more volunteers?
It is hard to estimate the total number of people with bipolar disorder who have taken part in our research. Over the last 5 years we have conducted small scale projects and large clinical trials that involved people from all over the North of England (from Cumbria and Lancashire to Yorkshire and Nottinghamshire) and Wales, but also Saudi Arabia. Our involvement with the national initiative I referred to earlier will involve people from the Midlands; I have taken a lead on a research project that is conducted in collaboration with one of the largest NHS Trusts in London, while people from across the UK have expressed interest for our internet based intervention studies. A very rough estimate would exceed 1000 people.
It is important to note that Spectrum’s significant expansion over the last 5 years allowed us to develop more research projects, which in effect increased our needs for more people who would be willing to participate. In the meantime, finding volunteers who would be happy to spend some of their personal time to take part in research has always been and will possible always be challenging. As such, we are continuously trying to identify ways that our work will reach more people so that more people will have access to the services we offer.
How can someone get involved with your research?
We often advertise our research via a number of different media campaigns in collaboration with Lancaster University, several NHS Trusts, newspapers, magazines, and radio stations. People can ‘follow’ our work via our social media Facebook and Twitter pages, or our recent youtube channel where we upload videos of our upcoming research but also updates from previous work. All of our research is also available on our website (www.spectrumcentre.org).
Other than Spectrum Connect I mentioned earlier, another route into our research is through mental health charitable organisations but also the specialised mental health services and GP surgeries. We talk about new upcoming studies to our colleagues in these sectors and we encourage them to refer people that they think would benefit from our interventions into our studies.
Once people find a study that they are interested in, they can contact us for more information. If the study is suitable for them, the researcher will arrange all further procedures. That’s all!
What can someone expect if they put themselves forward as a participant?
In fact, there are a number of things that people should expect. But first of all, it is open and honest communication across the board. What I always suggest to my students is that if they ever had the dilemma between establishing a professional relationship with study participants vs. collecting all the necessary data, that they should choose the relationship.
In practice, however, and in fact during the first time that people talk with a researcher, it is the ethical responsibility of the researcher to explain the study in very great detail. This discussion should include topics such as what the study procedures would involve, how much of their time people would need to devote, what are the benefits from taking part (if any), what are the risks (again, if any), and what happens if they had a complaint. People should expect to be explicitly told that their participation is voluntarily and that they can withdraw from the study without their rights to treatment being affected in any way. Also, they should be informed that their participation is confidential, but that there are limits to confidentiality – that is when a researcher is obliged to break confidentiality and take appropriate action. People should also be informed about how their data will be kept, for how long and where, and whether they will be informed about the results of the study. It is often the case that there are plans for the results to be published in various forms. People should be made aware that every effort will be made to ensure that their identity will be protected – that is that only anonymised information will be included in potential publications.
Once all these have been made clear and if people are still interested in taking part, they will be asked to sign a consent form. This is a written document which outlines the study, explaining its purposes and methods, and outlining the risks and benefits of participation. People should engage into any sort of research activity only after they have gone through this process first and signed the form. Depending on the nature of the study, consent forms can be read aloud (also known as verbal consent), or they can be provided electronically.
Where do you see research in bipolar disorder in the next 5 years?
While the bipolar experiences of our research participants may still be similar (at least up to a certain degree), I strongly believe that research will look very different in 5 years. This is due to the rapid advancements in technology and how this will be used within the health services, in light of the financial crisis that has had direct implications on the delivery of mental health services. As such, we need to think of effective, cheap and flexible ways that mental health services can be delivered. Such interventions need to be developed and tested prior to be implemented in the NHS, and Spectrum Centre is very well placed to deliver such work to very high standards. As such, we are looking forward to the challenges ahead.
Inspired to take part in research?
For other opportunities, see Bipolar UK’s Research Partnerships page.