Treatment Behaviour Study
We have now stopped recruiting to this study. Below is further information about the study and the process participants went through.
Who is conducting the study?
The organisation conducting the study is SANE, a national mental health charity in the United Kingdom. The study supervisor is Susanne Gibson, who is a Research Manager at SANE. You can contact her by post, telephone or email; details are given at the end of this Information Sheet.
What is the study about?
The study is concerned with the ways in which people diagnosed with schizophrenia or bipolar disorder make decisions about following their recommended courses of treatment, and the ways in which they are or would like to be supported in doing so. We are interested in both clinician and service user perspectives.
How will the results of the study be used?
The results of the study will be published on SANE’s website. We will also seek publication of the main findings in academic journals.
Our findings will also be used to make our own services better and to inform our campaigning and media activities, as we work towards better services for and more appropriate representation of people diagnosed with schizophrenia or bipolar disorder.
What does ‘taking part’ entail?
We will ask you to fill in a questionnaire, either online or by telephone, depending on your preferences.
Will I learn the results of the study?
The results of the study will be published on the SANE website and there will be a link allowing participants and others to feed back on the study. If at any time you want to find out how the study is going you can contact the research team using the contact details below.
How much of my time will it take up?
We estimate that the questionnaire will take between ½ -1 hour.
What about my privacy?
There are a number of measures in place to protect your anonymity and the confidentiality of your personal details. If you choose to take part by phone we will ask for a phone number to call you on and agree a good time to call. We will ask you what message you would like us to leave (if any) in case you don’t answer or someone other than yourself answers the phone. If you participate online then you will not be asked for your name or contact details at any time during the study.
The words and other materials you give us may be used in published writings in academic journals and in reports for the Internet but your name and personal details will remain confidential within the research team. Sometimes we directly quote things that participants have said or written to help us illustrate a point but we ensure that people are not personally identifiable by these.
All recordings (for telephone questionnaires) and responses will be stored on password-protected hard drives with state-of-the-art virus protection. Back-up tapes and any written materials are stored in a locked cabinet in a building with 24-hour security. Any personal details you give us, such as names and phone numbers will also be stored on a password-protected computer, separate from the recordings and responses and will be destroyed within 1 year of study completion. Any individual contributions (questionnaires) will be identifiable only by an ID number.
Are there any risks involved in taking part?
We do not anticipate that there will be any risks to you in taking part.
How might I benefit from taking part?
People who have taken part in previous studies have told us that writing or talking about their experiences was constructive and beneficial, and some say that they have learned something through taking part in a study. While we are very pleased to hear that this sometimes happens, we cannot promise that you will experience this.
If I agree to take part now, can I change my mind?
Yes. All participants are free to leave the study at any time. All you need to do is tell us that you want to stop or just stop submitting your answers online. We will not use any data from questionnaires that have not been completed.
If you have discontinued participation and you later decide to come back to the study, then as long as we are still recruiting participants please just get in touch to find out how you can continue to contribute.
Will I be paid to take part?
No. The funding for this research is limited. This unfortunately means that we are unable to pay you for your time. If you are participating by telephone then we will phone you.
Who is funding the study?
We have received financial support for the study from Janssen-Cilag.
How will I be able to get in touch with the research team?
There is a dedicated email address for the study: TreatmentChoices@sane.org.uk
Or if you would prefer, you can call the research team on 020 7422 5575/5537, or write to us at Treatment Choices Study, Research Department, SANE, 1st Floor Cityside House, Adler Street, London E1 1EE
What if I have further questions about the study before I decide whether to take part?
Members of the research team will be very happy to answer any further questions that you have. You can contact us using the details above.