The Role of Psychological Processes in Psychotic Experiences

Participant Information Sheet

The PIS should be read in conjunction with The University privacy notice.

You are being invited to take part in a research study as part of a student project looking at what factors influence the development of experiences such as feeling suspicious or paranoid, and difficulties showing emotions, enjoying activities and socialising with others.

Before you decide whether or not to take part, it is important for you to understand why the research is being conducted and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Please ask if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part.

Thank you for taking the time to read this.

 

Who will conduct the research?

This research will be carried out by Amy Degnan and Charlotte Humphrey who are Trainee Clinical Psychologists at the University of Manchester. The research is supervised by Dr Sandra Bucci (Honorary Clinical Psychologist and Senior Lecturer in Clinical Psychology) and Dr Katherine Berry (Senior Lecturer in Clinical Psychology). Please find their contact details at the end of this Participant Information Sheet (PIS).

 

What is the purpose of the research?

This study will look at psychological processes that may play a role in psychotic-like experiences. Psychotic experiences are common and can also be experienced by the general population. People who experience psychosis sometimes hear voices or have suspicious or paranoid beliefs. These experiences are called ‘positive symptoms’ as they are characterised by the presence or addition of ‘unusual’ experiences. People with psychosis may also find it difficult to show emotions and speak to others. They may find it difficult to enjoy activities and socialise with others. These experiences are called ‘negative symptoms’ as they are characterised by the absence or loss of experiences.

People who experience psychosis may have had difficult childhoods. For example, they may have been neglected or harmed by their parents or carers. Researchers think that frightening experiences like this can make someone more likely to experience psychosis. However, not everyone that has had difficult childhoods goes on to develop psychosis and it is possible that there are other reasons people may experience positive and negative symptoms of psychosis.

Some researchers think that frightening experiences in childhood may affect early relationships. In childhood, people learn how to relate to themselves, others and the world around them. Some people with difficult childhoods may grow up seeing their parent or carer as scary or fearful. This means that in adulthood, they may wish to be close to people but also fear them. This may make people more likely to hear voices and feel suspicious or paranoid. However, it is less clear whether these people are also more likely to experience negative symptoms.

Some researchers think that frightening experiences in childhood can also make some people more likely to develop negative beliefs about themselves and others. For example, they may believe that they are unlovable and that others are frightening. These types of beliefs may make someone more likely to feel suspicious or paranoid.

Another reason for people experiencing positive and negative symptoms may be something called dissociation. This includes experiences like daydreaming, things not seeming real, or strongly feeling that a current experience has already been experienced in the past. These experiences are common in the general population. Research suggests there are different types of dissociation and some may be more important for negative symptoms. However, research findings have been mixed.

Therefore, this study aims to look at the psychological processes involved in the development of positive and negative symptoms in psychosis. It is important to study people with and without experiences of psychosis as it is well known that experiences of psychosis can also occur in the general population. This will help to better understand the psychological processes that underlie psychotic-like experiences and in turn will help with the development of psychological treatments for distress related to these experiences.

 

Why have I been chosen?

You have been invited to take part because you are over the age of 18, with or without experiences of psychosis, and have sufficient understanding of the English language so that the survey can be understood and completed.

One of the questionnaires will ask you if you have a self-reported diagnosis of psychosis or if you have received support for experiences related to psychosis (e.g. medication, treatment, support or therapy).  However, we are interested in people with and without these experiences.

 

What would I be asked to do if I took part?

If you agree to take part, you will be directed to an online survey. After reading the consent form you will be asked to complete 11 questionnaires. We expect that completing this survey will take approximately 30 to 45 minutes.

This survey will ask you questions related to unusual experiences, early experiences of trauma, your relationships, your beliefs about yourself and others, and emotional distress. Some of the questions in this survey may be sensitive for you. These include items on childhood trauma and abuse, stressful events, and symptom experiences. Examples of sensitive questions that will be asked include whether ‘You were emotionally or psychologically mistreated over a significant period of time by someone with whom you were very close’ and ‘Have you ever been in a major automobile, boat, motorcycle, plane, train, or industrial accident that resulted significant loss of personal property, serious injury to self, or other, the death of a significant other, or the fear of your own death?’  

Once you have started the questionnaires, you will be required to finish the survey in one sitting as there is no facility for saving and returning later.

 

What are the possible disadvantages and risks of taking part?

We do not anticipate that participation will cause distress. However, it is possible that some difficult feelings may be brought to the surface whilst completing this survey. If you do experience distress, you may discontinue the survey at any time. At the bottom of this page, and on completion of the survey, there is a list of various support services that you may contact if you experience distress as a result of participating. In addition, the contact details of the researchers are provided, and you can contact the researchers in working hours. If you experience distress out of hours, there is a list of support services provided at the bottom of this page.

 

What are the possible benefits of taking part?

Taking part in this research is unlikely to help you directly. However, completing the survey may provide you with an opportunity to reflect on your feelings and experiences. Research findings from the study will also help us to better understand the processes involved in psychosis and may be used to improve psychological treatments for people with distressing experiences.

 

Will I be paid for participating in the research?

Whilst there will be no financial reimbursement, you will have the opportunity to enter into a prize draw. High street shopping vouchers worth £50 will be provided to four winners of our prize draw as a token of appreciation. If you would like to be entered into the prize draw we will ask you to provide your email address at the end of the survey and tick ‘prize draw’.

If you are a psychology student, we will provide you with three research credits. At the end of the study we will ask you to provide your email address and tick ‘psychology credits’.

 

What is the duration of the research?

We expect that completing this survey will take approximately 30 to 45 minutes.

 

Will the outcomes of the research be published?

The results of the research will be included in a report that will be submitted for examination by the University of Manchester. The results may also be published within an academic journal and may be presented at conferences. There will be no personal information about any of the people who participate within any of these reports or presentations.

If you would like us to email you a summary of the findings when the study is complete, please fill in your email address in the box provided at the end of the survey and tick the box ‘summary of findings’.

 

What will happen to my personal information?

In order to undertake the research project we will need to collect the following personal information/data about you:

  • Gender, age, nationality, sexual orientation, first language
  • Marital or civil partnership status
  • Education and employment
  • Mental health (for example, if you have a mental health diagnosis, or have received support in relation to psychological or emotional difficulties)

Only the research team will have access to this information. We are collecting and storing this personal information in accordance with the General Data Protection Regulation (GDPR) and Data Protection Act 2018 which legislate to protect your personal information. The legal basis upon which we are using your personal information is “public interest task” and “for research purposes” if sensitive information is collected. For more information about the way we process your personal information and comply with data protection law please see our Privacy Notice for Research Participants.

The University of Manchester, as Data Controller for this project, takes responsibility for the protection of the personal information that this study is collecting about you.  In order to comply with the legal obligations to protect your personal data the University has safeguards in place such as policies and procedures. All researchers are appropriately trained and your data will be looked after in the following way:

The data collected during the study will be stored in a secure place at the University of Manchester and only researchers will have access to it. Data files stored on the computer will be password protected. No names or addresses will be included and participants will be identified only by numbers in any computerised data files used in the analysis of the results. The data you provide will be kept anonymously for a maximum of 10 years on the University’s secure server. During this time it may be used for future studies. It will then be permanently deleted.

If you provide your email address so that you can be entered in to the prize draw, receive credits, or so that we can send you a summary of the findings, then this will be kept in a secure, password protected file. This information will not be attached to the information you provide on the survey when the data is downloaded. Therefore, the data collected will remain anonymous. It will then be permanently deleted upon completion of the study.

You have a number of rights under data protection law regarding your personal information. For example you can request a copy of the information we hold about you, including audio recordings or photographs. This is known as a Subject Access Request. If you would like to know more about your different rights, please consult our privacy notice for research and if you wish to contact us about your data protection rights, please email dataprotection@manchester.ac.uk or write to The Information Governance Office, Christie Building, University of Manchester, Oxford Road, M13 9PL. at the University and we will guide you through the process of exercising your rights.

You also have a right to complain to the Information Commissioner’s Office, Tel 0303 123 1113

 

Will my participation in the study be confidential?

Your participation in the study will be kept confidential to the study team. As outlined above, no names or addresses will be obtained, and participants will be identified only by numbers. If you provide your email address so that you can be entered in to the prize draw, to receive course credits, or so that we can send you a summary of the findings, then this will be kept in a secure, password protected file. This information will not be attached to the information you provide on the survey when the data is downloaded. Therefore, the data collected will remain anonymous.

Individuals from the University of Manchester, NHS Trust or regulatory authorities may need to look at the data collected for this study to make sure the project is being carried out as planned. All individuals involved in auditing and monitoring the study will have a strict duty of confidentiality to you as a research participant.

 

What happens if I do not want to take part or if I change my mind?

It is up to you to decide whether or not to take part. If you do decide to take part, you will be asked to read and sign a consent form. If you decide to take part, you can leave the survey at any time without giving a reason and without detriment to yourself. However, we will not be able to remove the data you have already given us because it will be anonymous, and we will not know which data yours is. This does not affect your data protection rights.

 

Will my data be used for future research?

When you agree to take part in a research study, the information you give in the online questionnaires may be provided to researchers running other ethically approved research in similar areas. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research.

The anonymised questionnaire data used will not be linked to identifiable information (contact details) and you will not be identifiable. The information will only be used for the purpose of health and care research, and cannot be used to contact you regarding any other matter or to affect your care. It will not be used to make decisions about future services available to you.

 

Who has reviewed the research project?

The project has been reviewed by the University of Manchester Research Ethics Committee [Ref: 2019-5562-9487].

 

What if I want to make a complaint?

 

Minor complaints:

If you wish to make a complaint, then you will need to contact the researcher’s supervisors in the first instance:

 

Names: Dr Sandra Bucci

Role: Academic Supervisor

Address: Faculty of Biology, Medicine and Health; Division of Psychology and Mental Health; 2nd Floor, Zochonis Building, The University of Manchester, Brunswick Street, M13 9PL

Email: sandra.bucci@manchester.ac.uk

Tel No: 0161 306 0400

 

Names: Dr Katherine Berry

Role: Academic Supervisor

Address: Faculty of Biology, Medicine and Health; Division of Psychology and Mental Health; 2nd Floor, Zochonis Building, The University of Manchester, Brunswick Street, M13 9PL

Email: katherine.berry@manchester.ac.uk   

Tel No: 0161 306 0400

 

Formal Complaints

If you wish to make a formal complaint or if you are not satisfied with the response you have gained from the researchers in the first instance then please contact:

The Research Governance and Integrity Manager, Research Office, Christie Building, University of Manchester, Oxford Road, Manchester, M13 9PL, by emailing: research.complaints@manchester.ac.uk  or by telephoning 0161 275 2674.

 

What do I do now?

If you have any queries about the study then please contact the Chief Investigators, Charlotte and Amy (see contact details below). If you are happy to proceed, then please continue to the consent form.

 

Names: Amy Degnan and Charlotte Humphrey

Role: Chief Investigators and Trainee Clinical Psychologists

Address: Faculty of Biology, Medicine and Health; Division of Psychology and Mental Health; 2nd Floor, Zochonis Building, the University of Manchester, Brunswick Street, M13 9PL

Email: amy.degnan@postgrad.manchester.ac.uk  and charlotte.humphrey@postgrad.manchester.ac.uk

Tel No: 0161 306 0400

 

Support services

The following is a list of services you may contact for support, advice, or in emergency:

Turn2Me

This is a web space for people to share, discuss and offload personal problems, find support and get useful information.

www.turn2me.org

Sane Line

0300 304 7000.
Offering specialist mental health emotional support 4.30-10.30pm every day.
You can also email through their website.
www.sane.org.uk

Rethink

0300 5000 927

Open Mon-Fri 9:30am - 4pm. Rethink provide support, advice and signposting for carers.

http://www.rethink.org/

Hearing Voices Network

0114 271 8210

nhvn@hotmail.co.uk 

Peer support network

Samaritans

116 123

jo@samaritans.org

Open 24 hours a day. They offer confidential emotional support by telephone, email, text, letter and face to face.

NHS Direct

111

Open 24 hours a day. They provide health advice and information.

University of Manchester Counselling Service

0161 275 2864

http://www.counsellingservice.manchester.ac.uk/get-help/

Open from 9am - 4pm, Monday to Friday. Offer counselling appointments for students.

 

Click here to complete the consent form

ClinPsyD, Second Floor Zochonis Building, Brunswick Street, Manchester M13 9PL
Tel: +44 (0)161 306 0400
Fax: +44 (0)161 306 0406