Participant Information Sheet
Measuring Different Types of Relationship Styles in Psychosis
You are being invited to take part in a research study developing a questionnaire to measure different relationship styles in psychosis, which is being carried out as part of a doctorate degree. Before you decide whether you would like to take part in the study, please read the following information carefully so you can understand what taking part would involve. Please read this in your own time, you can always return to this webpage when you are ready. Once you have done so, you can then click the button at the bottom of the page to continue.
If you have any questions about taking part in the study, please contact the principal investigator, Miranda Justo-Nunez (firstname.lastname@example.org). You do not have to decide straight away, so do take some time to think it over if you feel unsure.
About the research
- Who will conduct the research?
The chief investigator of this research is Miranda Justo-Nunez. The research supervisors are Professor Katherine Berry and Professor Sandra Bucci. The research team are from the Division of Psychology and Mental Health of the University of Manchester.
- What is the purpose of the research?
Our early relationships have been linked to the development of psychosis, a mental health issue that affects how people view and understand things. Psychosis involves experiences such as hallucinations, where a person hears, sees and in some cases feels, smells or tastes things that are not there; or delusions, where a person has strong beliefs that are not shared by others.
When we are young, our early relationships shape how we feel about ourselves, the world, and other people. Sometimes people grow up with parents/guardians who they see as frightened, or frightening. Research suggests that when these young people grow up, they are more likely to report hearing voices and feel paranoid. However, it is not clear how this happens.
At the moment, more research needs to be done to understand why these people are more likely to hear voices and feel paranoid. We aim to develop a questionnaire that measures whether people have grown up feeling scared of their parent/guardian so that we can use this in research to help us understand the link between feeling fearful in early relationships and the development of psychosis.
Why have I been invited to take part?
You have been invited to take part because you are over the age of 18 and:
- have a self-reported diagnosis of psychosis, such as schizophrenia, schizophreniform disorder, schizoaffective disorder, delusional disorder, psychosis NOS, and so on)
- OR received antipsychotic medication for experiences related to psychosis
- OR received treatment in a mental health unit / hospital for experiences related to psychosis
- OR received input from community mental health team or early intervention service for experiences related to psychosis
- OR received therapeutic input (e.g. CBT therapist, psychologist) for experiences related to psychosis, such as hearing voices, visual hallucinations, paranoid ideation or unusual beliefs.
- are confident with using the English language
- 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
- Who has reviewed the research project?
The University of Manchester Ethics Committee.
What would my involvement be?
- What would I be asked to do if I took part?
If you agree to take part, you will be directed to an on-line survey. There are 8 sections to this survey. We expect that completing this survey will take up to 45 minutes.
The questionnaire will begin by collecting some basic information about yourself. This will include questions around age, sex, sexual orientation, ethnicity and marital status. You will also be asked to provide some information around your mental health, and whether you have ever had any experiences related to psychosis.
This survey will ask you questions related to early experiences of trauma, questions about your relationships, about unusual experiences, and about any distress. Examples of questions that may be asked are, ‘Have you ever deliberately been attacked that severely 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’. Some of the questions in this survey may be very sensitive for you. These include items on childhood bullying, abuse, stressful events, and symptom experiences.
Once you have started the questionnaires, you need to finish it in one sitting as it is not possible to save you answers so that you can return to them at a later date.
At the end of the survey you will be asked if you are happy to provide your email address to be contacted in two weeks to complete just one of the sections again. We expect that completing this second survey will take up to ten minutes. It is your choice whether you would like to complete the second survey.
- What are the possible disadvantages and risks of taking part?
We do not anticipate that your participation will cause you distress. However, 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 contact details of various support services that you may contact if you experience distress as a result of participating. In addition, the contact details of the researcher are provided, and you can contact the researcher in working hours. Please note that if you share any information with the researchers which suggests that you, or somebody else, is in danger, it is possible that they will need to break confidentiality. If you experience distress out of hours, please attend A&E or contact your local crisis team.
- 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 obtained during the study will also help us to better understand the factors involved in psychosis and may potentially be used to improve psychological treatments for people with distressing experiences.
If you would like me 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’.
- Will I be compensated for taking part?
Whilst there will be no financial reimbursement, you will have the opportunity to enter your details into a prize draw for a chance to win one of two £50 high street vouchers. 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’.
- 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 decide not to take part after reading this information, simply close the window of your browser and you will not be directed to the questionnaires. If you do decide to take part you will be given this information sheet to keep and will be asked read and agree to a consent form.
If you decide to take part you are still free to withdraw at any time without giving a reason and without detriment to yourself. However, it will not be possible to remove your data from the project once it has been anonymised as we will not be able to identify your specific data. This does not affect your data protection rights. If you decide not to take part you do not need to do anything further.
Data Protection and Confidentiality
- What information will you collect about me?
In order to participate in this research project, you will not be required to provide information that could identify you, called “personal identifiable information”. The exception to this is if you would like to be entered into the prize draw, to be contacted in two weeks to complete one of the questionnaires again, or so that we can send you a summary of the findings. In this case, we will need to collect your email address.
If you do choose to share your email address, this will be collected and stored in accordance with data protection law which protects your rights. These state that we must have a legal basis (specific reason) for collecting your data. For this study, the specific reason is that it is “a public interest task” and “a process necessary for research purposes”.
- Under what legal basis are you collecting this information?
We are collecting and storing this personal identifiable information in accordance with data protection law which protect your rights. These state that we must have a legal basis (specific reason) for collecting your data. For this study, the specific reason is that it is “a public interest task” and “a process necessary for research purposes”.
- What are my rights in relation to the information you will collect about me?
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.
If you would like to know more about your different rights or the way we use your personal information to ensure we follow the law, please consult our Privacy Notice for Research.
- Will my participation in the study be confidential and my personal identifiable information be protected?
In accordance with data protection law, The University of Manchester is the Data Controller for this project. This means that we are responsible for making sure your personal information is kept secure, confidential and used only in the way you have been told it will be used. All researchers are trained with this in mind, and your data will be looked after in the following way:
- The data collected during the study will be stored in a secure place 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. It will then be permanently deleted.
If you would like to be contacted in two weeks to complete one of the questionnaires again, you will be asked to submit your email address. This will be temporarily linked to your survey via an anonymous ID number and will be stored on the University’s secure server. In this time, the research team will not have access to your data or email address. After two weeks, you will receive an automatically generated reminder to complete the second questionnaire. Once this has been sent, your email address will automatically be deleted. The two surveys will be linked by an anonymous ID number so that the research team can compare them.
If you would like to be entered in to the prize draw, or so that we can send you a summary of the findings, you will be asked to submit your email address, you will be asked to submit your email address again. This information will be kept in a secure, password protected file. This information will not be attached to the information you provide on the survey and so the data collected will remain anonymous. It is up to you whether you choose to provide this information.
If you choose to contact the research team and share information which raises concerns around your safety, or that of others, please note that we may need to break confidentiality in this instance.
Please also note that individuals from The University of Manchester 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. This may involve looking at identifiable data. All individuals involved in auditing and monitoring the study will have a strict duty of confidentiality to you as a research participant.
What if I have a complaint?
- Contact details for complaints
If you have a complaint that you wish to direct to members of the research team, please contact: Professor Katherine Berry, via Katherine.Berry@manchester.ac.uk or 0161 306 0400
If you wish to make a formal complaint to someone independent of the research team or if you are not satisfied with the response you have gained from the researchers in the first instance then please contact:
The Research Ethics Manager, Research Office, Christie Building, The University of Manchester, Oxford Road, Manchester, M13 9PL, by emailing: email@example.com or by telephoning 0161 275 2674.
If you wish to contact us about your data protection rights, please email firstname.lastname@example.org or write to The Information Governance Office, Christie Building, The 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 about complaints relating to your personal identifiable information Tel 0303 123 1113
If you have any queries about the study, please contact the researcher(s):
Miranda Justo-Nunez (chief investigator)
The University of Manchester
Division of Psychology and Mental Health
2nd Floor, Zochonis Building
Ph: 0161 306 0400
Professor Katherine Berry (research supervisor)
Ph: 0161 306 0400
Professor Sandra Bucci (second research supervisory)
Ph: 0161 306 0400
If you are in need of support
The following is a list of services you may contact for support, advice, or in emergency:
This is a web space for people to share, discuss and offload personal problems, find support and get useful information.
0845 767 8000
Offering specialist mental health emotional support 6-11pm every day.
You can also email through their website.
0300 5000 927
Open Mon-Fri 10am - 2pm. Rethink provide support, advice and signposting for carers.
Hearing Voices Network
0114 271 8210
Peer support network
Open 24 hours a day. They offer confidential emotional support by telephone, email, text, letter and face to face.
Open 24 hours a day. They provide health advice and information.
Refuge National Domestic Abuse Helpline
Offers free and confidential advice, 24 hours a day.
The research team can also be contacted if you are experiencing any difficulties via the details provided in the “contact details” section. However, please note that we are unable to provide therapeutic or crisis support, and are only available Monday-Friday from 9am-5pm.
If you do choose to share any information with the research team which suggests that you, or someone else, is in danger then we may need to break confidentiality to protect against harm.