Interested in taking part?

What is the purpose of the study?

The Mental Health Act allows professionals to admit people to hospital against their will. People from black and minority ethnic communities are more likely to get ‘care’ this way. This can be distressing, reduces trust, and is costly. The government’s review of these laws recommended more research to understand the rise in use of compulsory care. The review asked for the views of service users, carers and mental health staff.

The research will ask people about their experiences of compulsory admission to hospital using a law that is called the Mental Health Act. People from black and ethnic minority communities more often experience this. We want to find ways of reducing care like this.

Photovoice is a research process that asks people to take photographs, then reflect on and caption these to share their experiences and perspectives. We have found this creative methodology is empowering, leaving positive effects on participants' confidence

Why have I been invited?

You have been invited because you have experience of being detained under the Mental Health Act in the last 12 months, and are over the age of 18.

Do I have to take part?

No. You can ask questions about the research before deciding whether or not to take part.  If you do agree to take part, you may withdraw yourself from the study at any time, without giving a reason, and without negative consequences, by advising a member of the research team of this decision. If you decide to withdraw from the study your data will not be used, but will be stored securely and archived for three years once the study has ended.

What will happen to me if I decide to take part?

You will be invited to attend 3 face to face workshops. You are able to bring a friend or family member with you, however this person should be someone that you are comfortable talking about your experiences with. There will be other service users present at the workshop. If you are happy to take part in this study we will arrange a time for you to attend a workshop that will be held in a local community venue. We will ensure that all accessibility needs are met.

We will be mindful of the situation and changing guidelines in relation to the COVID19 Pandemic. All study activities will adhere to government guidance at the time. This may mean that workshops are held virtually if the government guidance does not allow for group meetings in doors. The preference will be to hold workshops face to face where possible.

At the beginning of the first workshop we will talk through the procedures and you will be able to ask any questions, you will then be asked to sign a form that indicates that you consent to take part in the study. A member of the research team will talk through this form with you to discuss what each of the statements mean. You will be required to agree that any information discussed by other service users during the workshop remains confidential. You can ask to leave the study at any time, and there will be no negative consequences.

The first workshop will last for around four hours, refreshments will be provided and there will be lots of opportunities to take a break. At this workshop we will introduce the ideas around photovoice, and provide you with a disposable camera, notepad and prepaid envelope. There will also be the option to take digital photographs if preferred however we will be unable to provide a camera in this instance, however you may use your own camera phone or digital camera. After this workshop you will be asked to take photographs that reflect your thoughts and experiences around being detained under the Mental Health Act and asked to post the camera back to the research team so that we can develop your photographs if required.

The second workshop will take place around three weeks after the first one and will take a full day. At the beginning of this workshop we will check with you that you are still happy to be involved. We will work with you on a one to one basis to choose three to five of your photographs to explore in more depth. We will take you through a guided reflection to help you develop some text to go alongside your photographs.

The third workshop will also be a full day and will take place one to two weeks after the second. At this workshop you will have the opportunity to share your experiences with the rest of the group. You will be in control of whether you share any information, how much information you share and whether you would like to share your experiences anonymously.

The photographs and captions developed in the workshops may be displayed in exhibitions, that you will be invited to. You will be asked before any photographs are displayed. Workshops will be video recorded but this will only be to assist the research team in better understanding the processes relating to photovoice workshops.

What should I consider?

In order to take part in this research you should be able to attend all three workshops and be willing to openly share your experiences with the research team.

Are there any possible disadvantages or risks from taking part?

The main risk in taking part relates to confidentiality. To reduce any potential risks, all captions relating to photographs will be pseudonymised (false details shall be used where appropriate). It may also become distressing to recall a time when you were detained. We have an experienced research team who will be happy to provide any support needed, including working with local care teams to ensure that support extends beyond attendance at workshops where required.

What are the possible benefits of taking part?

You will receive a £15 amazon voucher at the end of each workshop you attend to thank you for taking part. You will be invited to attend three workshops in total. Previous participants have reported enjoying being able to explore their experiences using photography, as well as having the opportunity to be involved with a study that will inform policy. All travel expenses will be reimbursed.

Will my General Practitioner/family doctor (GP) be informed of my participation?

We will not inform your GP of your participation.

Will my taking part in the study be kept confidential?

During the workshop all discussions will be confidential. However, confidentiality may be broken if you provide information that leads the research team to believe that there is a risk of harm to yourself or someone else.

The information you provide during the study is the research data. We will be collecting personal data regarding ethnicity and profession, this will be anonymised and only used to provide context to the data. Information collected to facilitate the organisation of workshops (this will be securely destroyed once the workshops have been completed).

Personal and sensitive data will be stored electronically and securely on an encrypted university device for the duration of the study.

Other research data (including consent forms) will be stored for at least 3 years after publication or public release of the work of the research. This will also include video recordings of the workshops. These recordings will not be shared beyond the immediate research team and sponsor.

Only the research team will have access to the research data.  Responsible members of the University of Oxford may be given access to data for monitoring and/or audit of the study to ensure that the research is complying with applicable regulations.

We would like your permission to use anonymised data in future studies, to use direct quotes in any research outputs, and to share data with other researchers. All personal information that could identify you will be removed or changed before information is shared with other researchers or results are made public. You will be able to state in the consent form whether you are happy for us to do this, and to what extent. You do not have to agree to this in order to take part in this research.

What will happen to my data?

UK General Data Protection Regulations (UK GDPR) require mention of data controller (University of Oxford), legal basis for processing, and more explicit details about what personal data will be held by whom, for what purposes, and for how long. Detailed guidance on data protection for researchers is available here: https://researchsupport.admin.ox.ac.uk/sites/default/files/researchsupport/documents/media/data_protection_and_research.pdf

Data protection regulation requires that we state the legal basis for processing information about you.  In the case of research, this is ‘a task in the public interest.’ The University of Oxford is the sponsor for this study, based in the United Kingdom, is the data controller and is responsible for looking after your information and using it properly. 

We will be using information provided by you in order to undertake this study and will use the minimum personally-identifiable information possible. We will destroy identifiable information about you for once the study has finished. This excludes any research documents with personal information, such as consent forms, which will be held securely at the University of Oxford for 3 years after the end of the study. If you agree to your details being held to be contacted regarding future research, we will retain a copy of your consent form until such time as your details are removed from our database but will keep the consent form and your details separate.

Data protection regulation provides you with control over your personal data and how it is used.  When you agree to your information being used in research, however, some of those rights may be limited in order for the research to be reliable and accurate. Further information about your rights with respect to your personal data is available at

https://compliance.web.ox.ac.uk/individual-rights

You can find out more about how we use your information by contacting kam.bhui@psych.ox.ac.uk

What will happen if I don't want to carry on with the study?

You are able to withdraw from the study at any time without consequence. If for any reason you do not want to continue with the study either during the workshops, or decide later that you would like to have your contributions removed from the study, you simply need to let a member of the research team know. There are contact details at the end of this information sheet.

What will happen to the results of this study?

The research will be published in academic journals, on a dedicated website and presented at co-design workshops. We will ensure that you are not identifiable in these outputs unless you specify otherwise. In previous workshops participants have found the process to be very empowering and requested to retain ownership over the photographs that they have taken as opposed to being anonymised. There will be opportunities for you to contribute towards the research in an ongoing basis. We will ensure that you are acknowledged where you wish you be.

What if there is a problem?

If you have any questions or concerns about the study, you can contact the main study team co-pact@psych.ox.ac.uk. Additionally, there will is someone who is responsible for safeguarding locally on behalf of the study team, this person is known as the local principal investigator and can be contacted at: [insert details].

The University of Oxford, as Sponsor, has appropriate insurance in place in the unlikely event that you suffer any harm as a direct consequence of your participation in this study.

If you wish to complain about any aspect of the way in which you have been approached or treated, or how your information is handled during the course of this study, you should contact Dr Roisin Mooney (roisin.mooney@psych.ox.ac.uk) or you may contact the University of Oxford Clinical Trials and Research Governance (CTRG) office on 01865 616480, or the head of CTRG, email ctrg@admin.ox.ac.uk.

The Patient Advisory Liaison Service (PALS) is a confidential NHS service that can provide you with support for any complaints or queries you may have regarding the care you receive as an NHS patient. PALS is unable to provide information about this research study.

If you wish to contact the PALS team please contact <insert relevant local NHS site phone >.

How have patients and the public been involved in this study?

The methods being used in this work involve working collaboratively with a wide variety of stakeholders including service users and members of the public. Many patient and public advisory groups were consulted during the design of this research. There is also a co-applicant who is an expert by experience and contributes to the overall management of the project on a weekly basis

Who is organising and funding the study?

This study is funded by the National Institute for Health Research, Policy Research Programme. This means that the results of this research will inform policy and may lead to changes in the system surrounding the Mental health Act.

 Who has reviewed the study?

All research in the NHS is looked at by an independent group of people, called a Research Ethics Committee, to protect participants’ interests. This study has been reviewed and given favourable opinion by South Berkshire Research Ethics Committee.

Participation in future research:

If you are interested in taking part in this research, you will be asked to complete a consent form. On this form there is an option to indicate whether you are happy to be contacted about future research. If you agree, your contact details would be held separately from this study a password protected computer in the Department of Psychiatry.

All contact will come from our research team in the first instance, by agreeing to be contacted in future does not mean that you are required take part in future research. You may be removed from this register at any time by contacting the details below. 

Thank you for reading this information

 The Co-Pact Research Team 

co-pact@psych.ox.ac.uk