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Sound and Vision: A collaboration between service-users, artists and the public to explore the lived experience of hallucinations

Hallucinations refer to the experience of hearing, seeing, feeling, tasting, smelling, or sensing the presence of people or things that other people do not. Hallucinations occur in a wide array of psychiatric, neurological, and medical conditions, but many healthy people may also experience hallucinations at some point in their lives. Research studies estimate that 3–13% of the general population, depending on the age group studied, have experienced a hallucination during their lifetime. This suggests that up to 1 in 10 people may experience a hallucination at some point in their life. But what are these experiences like? And are they similar to hallucinations experienced by people with a clinical diagnosis? Our aim is to develop a better understanding of the content and quality of hallucinatory experiences in the general public and how they relate to life history and sociocultural factors. We would appreciate your time in filling out our survey to help us reach this goal. The survey will take 15-20 minutes to complete. During the survey, you will have the option to upload any artwork (files up to 1MB in size) you have created about your hallucination or hallucination-like experiences, if relevant and if you are interested.

Who can take part?

Anyone can complete the survey, whether or not they have experienced what they would call a hallucination. There is a spectrum of ways in which the sensory world is perceived and felt. We are interested in the natural diversity of sensory experiences.

How do I take part?

Please click next to read the information and consent form. If you consent, you will automatically be directed to the survey.

Information Sheet

Before you decide to take part in this survey it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information. A member of the team can be contacted if there is anything that is not clear or if you would like more information. If you take part, your answers to the questions are totally anonymous – we won’t be able to identify you based on this information. You can exit the questionnaire at any time and your answers will not be saved unless you complete all the questions. 

What is the survey about?

The survey aims to understand the diversity of hallucinatory experiences in the general population, such as the quality and content of these experiences, and the circumstances in which they arise.

Why have I been chosen?

You have been asked as a member of the general public to consider whether you would be happy to participate.

Do I have to take part?

Taking part is entirely voluntary. If you do decide to take part you will be free to withdraw at any time without providing a reason, and with no negative consequences.

What will happen to me if I take part?

We will ask you to complete an online survey. This will include questions about your demographics, your mental health history, and the quality and content of sensory experiences, related to how you hear, see, feel, or think.

What do I have to do?

If you are happy to participate, please click the link at the bottom of this page to proceed to the consent form. If you consent, you will be automatically directed to the survey.

Are there possible disadvantages and/or risks in taking part?

There are no risks in taking part in this survey. It will however take 15-20 minutes of your time.

What are the possible benefits of taking part?

You will contribute to a better understanding of the quality and content of hallucination-like experiences in the general population, which we hope will raise awareness and challenge stigma around the experience of hallucinations.

What will happen to my data and to the results of the research?

Your responses to the survey will be anonymous, which means that no one could use any reasonable means to identify you from the data. As your data will be anonymous it cannot be withdrawn because we will not know which data is yours.

The anonymous data collected will be stored securely on the University servers and only the researchers will be able to access it.  The data will be analysed as part of the research study and then results will be written up for project reports, publication in peer-reviewed scientific journal, and/or presented at conferences, and shared with academic collaborators. After the project has completed the data will be retained.

For more information on the University’s data protection and privacy policies, please visit: https://www.medschl.cam.ac.uk/research/information-governance or email the Information Governance team: researchgovernance@medschl.cam.ac.uk

Who is organizing and funding the research?

This study is being conducted by researchers in the Department of Psychiatry at the University of Cambridge. The Cambridge and Peterborough NHS Foundation Trust (CPFT) and the University of Cambridge are joint sponsors for this study.

The study is being funded by the Guarantors of Brain, a medical charity (www.guarantorsofbrain.org), the Isaac Newton Trust, a charity promoting learning, research and education in the University of Cambridge (www.newtontrust.cam.ac.uk), and the University of Cambridge Public Engagement Starter Fund, a small grant to undertake innovative public engagement with research activities (https://www.cam.ac.uk/public-engagement/information-for-staff-and-students/public-engagement-starter-fund-0).

Ethical review of the study

The study has been independently reviewed by medical doctors and patients and has received a favourable ethical review by a Research Ethics Committee.

Contact for further information

If you have any questions about the study, please contact us:

John Suckling, Department of Psychiatry, University of Cambridge, Herchel Smith Building, Robinson Way, Cambridge, CB2 0SZ.

Email: js369@cam.ac.uk