You are being invited to take part in one of the sub-studies which is part of the wider Complex Emotions Hub research project. You have already consented to be a participant in the main cohort study - this sub-study is in addition to this and is optional. Before you decide whether to participate, it is important for you to understand why this sub-study is being done and what it will involve.

This document is a detailed participant information sheet; its purpose is to clearly explain more about the sub-study, so you can decide if you want to be involved.  Thank you for reading this, please ask us if there is anything that is not clear in this document, or if you would like more information. 

The Complex Emotions Hub is a three-year research project that aims to better understand the experiences of people who live with complex emotions, with the goal of improving treatment, support, and outcomes.

Some aspects of this can be explored using questionnaires or structured interviews (like the one you may already have completed at the start of the project). However, the full impact that complex emotions can have on a person’s life isn’t always easy to capture through numbers alone. This sub-study will involve longer interviews that give both the participant and the researcher time and space to explore what is going well and what is more difficult. These interviews help us understand people’s experiences in greater depth and explore what matters most to each person.

We want to learn more about what influences people’s experiences of complex emotions, and how these experiences may change over time. We also want to understand why some people might be struggling while others have found ways to cope, or strategies that work well for them. We’ll use the information from these interviews, alongside other data collected in the main study and related sub-studies, to help improve the care people receive and support the development of new interventions. 

You have been invited because you have already consented to be a participant in the Complex Emotions Hub. As part of that consent, you agreed that the research team could contact you about sub-studies like this one, as it is still part of the same research project.

We aim to recruit a mixed group of 30–40 participants for the interview sub-study; because people have very different experiences, we want to speak to a wide range of individuals.

This includes people:

●       with or without a diagnosis related to complex emotions

●       who are currently receiving support

●       who have received support in the past

●       and those who have never received support

We also want to include people whose voices are often missing from complex emotions research, such as men, older adults, and people from ethnically diverse backgrounds.

We aim to speak to people at different stages in their journey, including those who are just beginning to experience complex emotions and those who have lived with them for a longer time. We are also keen to include people who have support from services or organisations and to include people who don’t. Please note, you do not need a formal diagnosis or to be under specialist care to take part. 

If you decide to take part:

·       You will be given this information sheet to keep and a new consent form to sign. This consent form only relates to the interview sub-study and is in addition to the one you signed for the wider Complex Emotions study.

·       You’ll have plenty of opportunities to ask questions, over the phone, by email, or at the start of your interview. You’ll receive an invite email with this information sheet, the consent form, and a link to book an interview or a number to text or call.

·       You’ll be able to choose whether you want to be interviewed online or in person, and we’ll provide available dates and locations.

o   Online interviews can be conducted using Microsoft Teams, Google Meet, or Zoom.

o   In-person interviews will usually take place in a private room at a university building, a healthcare setting, or a public space with private bookable rooms. We will find a mutually convenient time for your interview and can reimburse local travel costs.  

o   You are welcome to bring someone with you for support. This person can be present during the interview to offer you support but they are not there to answer the questions for you or speak on your behalf.

We’ll ask you to complete the online consent form before the interview. If that’s not possible, we’ll go through it together at the start of the interview and give you time to ask questions. 

The interviews will be between you and a trained researcher. Some of the research team conducting and analysing the interviews are what we call peer researchers (people with lived experience of complex emotions). You will be given the option to request not to have a peer researcher when you are invited to interview.  The interview will last around 1-2 hours. We can take breaks at any point, and if you'd prefer, we can split the interview across two sessions.

We will ask for your permission to record the interview either using an encrypted audio recording device or by recording the interview via Microsoft Teams or Google Meet. Recordings will be securely transferred to the University of Sheffield secure drive and used to create anonymised transcripts (removing any names or identifiable information). These transcripts will be analysed by the research team to help identify patterns and themes in the data. We’ll share updates and any published findings on our project website. 

To begin the first interview, we’ll invite you to talk about your experiences in your own words, starting with a broad question such as:

“Can you tell me about your journey with complex emotions, from when you first noticed them to where you are today?”

This part of the interview uses what’s called a biographical narrative approach, where the researcher does more listening than questioning, so you can share what feels most important to you. You also have the option of bringing an image or creative work to the interview to help you talk about your experiences.

After this open section, the interviewer may guide the conversation toward specific areas you have talked about or symptoms you have experienced in more detail. This might include questions on how they make you feel and act, their impact on your daily life, and any skills and coping mechanisms that you use and find helpful.

Some people may be interviewed more than once so we can understand how experiences shift in response to life changes or support. For those that have additional follow-up interviews, we will be asking you about your experiences of seeking help or coping strategies for complex emotions. This will include questions on the kind of support you have sought and received and how helpful you have found this, your experiences of diagnosis (or, of not being diagnosed), and how factors such as social and cultural expectations and norms influence how you seek support and understand your mental health. 

As part of the interview, you’re welcome to bring a photo, drawing, lyrics, poem or image that helps you talk about your experiences. This could be something that reminds you of a particular time, feeling, or experience related to your journey with complex emotions.

Bringing this is completely optional, you don’t need to bring anything if you don’t want to. If you do bring something, it will only be used to support you to discuss your experiences during the interview. It won’t be copied, photographed, or used in any other way unless you give us permission. We also ask that you avoid bringing images that show other people, unless those people have given you permission and cannot be easily identified. The consent form will ask if you understand this option. There will also be an additional, optional question asking if you agree for the image to be used in future publications by the research team (for example, in reports or presentations).

Even if you agree to bring an image to the interview, you can still choose not to allow us to use it beyond that, and you can change your mind about this at any time. 

By complex emotions we mean feelings that can be overwhelming, unpredictable, or hard to control. Some people describe feeling too much or sometimes nothing at all. These can be hard to manage, and often centre around difficulties with relationships, emotional regulation, impulsive and/or harmful behaviour.

These problems are often linked to diagnoses such as Borderline Personality Disorder (BPD), Emotionally Unstable Personality Disorder (EUPD), Complex Post Traumatic Stress Disorder (CPTSD), as well as other diagnoses including Depression and Anxiety, Autism, and Emotional Dysregulation. Some people who experience complex emotions may have one or more of these diagnoses; others will have no official diagnosis at all. Our research is not limited by diagnosis. 

We understand that labels can be stigmatising and limiting, so we have chosen to use the term complex emotions instead. 

No, but we are offering vouchers to thank you for your time and engagement with the interview sub-study. These can be spent with a wide range of retailers online and in-store (note they cannot be exchanged for cash or alternatives). We will also cover any travel expenses (although in-person attendance is not an essential part of the sub-study).

Interview = £25

Whilst there are no immediate benefits in participating in the project, it is hoped that this work will:

●       Help improve future care, treatment and outcomes for people who experience complex emotions.

●       Give you the opportunity to be heard and empowered by sharing your experiences.

●       Inform you, by receiving regular newsletters and updates about the study and by having access to useful resources.

We will thank you for your participation and time via gift vouchers. 

Unfortunately, you will not be able to participate in the in-depth interview sub-study if you:

●   Live or work outside Plymouth or Sheffield, or have no connection with these areas

You are under no obligation to take part in the sub-study, it’s your choice. You can continue to be in the main Complex Emotions Hub study if you choose not to take part in this sub-study.

If you decide to take part, you can also take a break, pause, or change your mind and withdraw at any time from this sub-study by contacting one of our researchers. You do not need to give a reason for your decision and your medical care or legal rights will not be affected in any way. 

If you leave the sub-study, you can either allow us to continue analysing the data we have collected from you, or choose to withdraw it. Please note, after six months has passed, your anonymised data will be part of the analysis dataset and it will no longer be possible to withdraw your data. 

There are some possible disadvantages to taking part in this sub-study that you need to be aware of. We have listed some below with the measures we will have in place to reduce this risk.

Potential disadvantages and measures in place to help 

Sensitive/triggering questions in both the survey and interviews (relating to trauma, self-harm, suicide, experiences with care providers)

Following measures: 

• Only asking for responses to questions you feel comfortable with

• Stopping/pausing interviews as required

• Allowing you to bring someone to interviews for support

Stigma (around complex emotions/diagnoses)

Following measures: 

• Strict data security and confidentiality will be upheld throughout. With your permission we will let your GP know you are involved in the sub-study, but we will not share any personal details/identifiable results. 

We recognise that talking about your experiences in these research interviews could be emotive and triggering at times. We cannot offer therapy or treatment but will do our best to support participants during the sub-study by:

●      Providing a named contact for any queries, check-ins every six months and reminders (available 9am to 5pm, Monday to Friday only)

●      Signposting to relevant support/crisis/healthcare services

●      Having robust safeguarding measures in place for issues the research team cannot help with

Please note, we will ask for an emergency contact and your GP’s details in case there is a risk of harm to yourself or others during the study. The emergency services may be called if there is an immediate threat to life. 

All the information that we collect about you during this sub-study will be kept strictly confidential and any identifiable data will only be accessible to members of the research team who need to access it (for contacting you or transcription/anonymisation). When data is being analysed you will be given a unique identification number to ensure anonymisation.

You will not be able to be identified in any reports or publications. Sometimes in public facing documents we use quotes to help illustrate points. We will not include any personal or identifiable information in these quotes but there is a chance you might recognise what you have said.

If you agree to us sharing the information you provide with other researchers (e.g. by making it available in a data archive) then your personal details will not be included.

Confidentiality:

●       We will adhere to strict UK safeguarding and privacy laws

●       We will replace personal details with a unique number during analysis

●       We will keep all published results anonymous so you cannot be identified

GP notification: If you agree we will inform your GP that you are taking part in this study. However, no data collected will be shared with them unless you request it.

Please note, if you tell us anything that puts you or someone else in danger, we may have to break confidentiality. We will let you know if this happens, and we will have a clear guidance in place that we will be adhering to. 

We will need to use information from you for this sub-study. This information will include:

●       Name and contact details.

●       Age, gender, ethnicity, housing, and employment status.

●       Interview data including: your symptoms, behaviours and experiences related to complex emotions and their impact on your daily life, your social and cultural environment, traumatic experiences, self-harm and suicidal thoughts

Sheffield Health and Social Care NHS Foundation Trust is the sponsor of this research and are responsible for looking after your information. We will share your information related to this research project with the following types of organisations:

-          Named university partners such as the University of Sheffield and University of Plymouth.

-          A Data repository (anonymised data only) for long term storage and future research use.

We will keep all information about you safe and secure by:

●       All Identifiable data will be processed (that means collected, stored and handled) at the University of Sheffield in their secure drives, with a small number of members from the research team. Only they can access it, so they can contact you to let you know about this  research.

●       Audio recordings will be initially recorded and stored on an encrypted (password protected) device. The researcher will then transfer this to the secure drive managed by the University of Sheffield and delete the original recording off the encrypted device. This will be completed within two working days.

●       Any video recordings of interviews using Microsoft Teams or Google Meet will be recorded on the researcher’s university account - never their personal account. The researcher will be responsible for transferring this to the safe drive managed by the University of Sheffield and delete the original recording off the online platform used. This will be completed within two working days.

●       Transcripts will be made of each interview and checked against the original recording. During this process, all identifiable information will be removed such as any names, locations or places. Once the transcript has been anonymised and checked, the original audio or video recording will be removed/deleted. Any digital data will be stored on secure online servers managed by Sheffield and Plymouth Universities - these are called safe drives.

●       Any paper-based data (such as a signed consent form or handwritten postal survey) will be stored in locked cabinets and offices at Sheffield Centre for Health and Related Research, School of Medicine and Population Health, Regent Court, 30 Regent Street, Sheffield.

●       Where possible, hard copies will be scanned and uploaded to secure online servers, and then destroyed.

●       People who are going to be processing the data include transcribers (who will anonymise the interview recordings into transcripts) and project admin staff who will input the trabnscripts into programmes for analysis. We typically use employees of the University of Sheffield or University of Plymouth for these services, where not possible we have external organisations where strict confidentiality agreements are in place.

Anonymised data (no identifiable information)

●       Due to the nature of this research, it is very likely that other researchers may find the data collected to be useful in answering future research questions. This will involve the anonymised data (transcripts) being stored in a data storage outside of the University of Sheffield. These third-party collaborators** are also bound by strict data sharing agreements. On the consent form there is an option for you to give explicit consent for your data to be shared in this way. You can opt out and still be part of this research

●   Once the study is complete, we will retain the anonymised data (transcripts and surveys) to verify the results. It will be stored for 15 years after the study ends, after which it will be deleted securely.

** In addition, you will be asked if your anonymous data can be shared with(this is optional):

●       Researchers in the wider UKRI Mental Health Platform - for additional cross analysis/use in future, ethically approved research.

●       DATAMIND - a mental health research hub (also funded by UKRI)/repository (this is an online databank of anonymised health related research data from lots of different research projects).  If you consent, your anonymised data could be used in future research or by industry partners (such as private or healthcare well-being businesses or app designers).

International Transfer?   Your data will not be shared outside the UK.

How long will you keep this data?

Once the study is complete, we will retain the anonymised data (transcripts) to verify the results. It will be stored for 15 years after the study ends, after which it will be deleted securely.

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study.

We will keep your study data for a maximum of 15 of years. The study data will then be fully anonymised and securely archived or destroyed.

●       Anonymised findings will be shared with participants on the study website, in regular bulletins and newsletters.

●   The results will be communicated more widely via social media, local/national news, scientific journals and conferences.

You will not be identifiable in any published results. 

You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have. 

If you agree to take part in this study, you will have the option to take part in future research using your data saved from this study – you will be asked about this as an optional part of the consent form.  DATAMIND TRES is a mental health research hub (also funded by UKRI) and is a repository for storing research data. This is an online databank of anonymised health related research data from lots of different research projects, many looking at different areas of mental health.  If you consent, your anonymised data could be stored in this repository and used in future research or by industry partners (such as private or healthcare well-being businesses or app designers). 

Our study is managed by Professor Scott Weich and is part of a wider Mental Health Research Platform funded by UKRI. The platform includes six research hubs across the UK, all focused on better understanding severe mental health conditions.

You can find out more about how we use your information:

• By checking our project website www.complexemotionshub.co.uk

• by asking one of the research team

• • by sending an email to complex_emotions_hub@sheffield.ac.uk, or

  • by ringing us on [phone number].

• You can contact the sponsor. The sponsor for this study is Sheffield Health and Social Care NHS Foundation Trust, they are the organisation that takes on overall responsibility for proportionate, effective arrangements being in place, to set up, run and report this research project.  Contact Michell Horspool email rdu@shsc.nhs.uk

Find out more about health research data at the Health Research Authority website www.hra.nhs.uk/patientdataandresearch  

The study has been reviewed and approved by:

●   An independent panel of experts at UKRI

●   A Lived Experience Advisory Panel

●        An independent NHS Research Ethics Committee/ HRA

We welcome questions and comments! If you have any questions about any aspect of this study, please contact the research team, Sally Ohlsen or Elissa Thompson: complex_emotions_hub@sheffield.ac.uk

Or write to us via: Complex Emotions Hub Team, Sheffield Centre for Health and Related Research,

School of Medicine and Population Health, University of Sheffield, Regent Court, 30 Regent Street, Sheffield, S1 4DA.

●   If you are dissatisfied with any aspect of the research and wish to make a complaint, please contact Professor Scott Weich, the chief investigator via s.weich@sheffield.ac.uk in the first instance.

●   If you feel your complaint has not been handled in a satisfactory way and would like to contact someone independent of the research team you can contact the University’s Research Ethics and Integrity Manager, Lindsay Unwin: l.v.unwin@sheffield.ac.uk

If the complaint relates to how your personal data has been handled, you can find information about how to raise a complaint in the University’s Privacy Notice: https://www.sheffield.ac.uk/govern/data-protection/privacy/general