An Examination of Psychological Wellbeing and Coping in People with Misophonia.

 IF YOU WOULD LIKE TO DOWNLOAD A COPY OF THIS INFORMATION SHEET TO KEEP FOR YOUR RECORDS    PLEASE EMAIL ANASTASIA RAPTAKIS (anastasia.raptakis.20@ucl.ac.uk).

 

          1. Invitation to participate in a research study

You are being invited to take part in a research study, which is being conducted by Ms Anastasia Raptakis as part of her MSc course, Dr Rebecca Gould (Division of Psychiatry, UCL), Professor Doris Bamiou (Ear Institute, UCL) and Dr Sergi Costafreda Gonzalez (Division of Psychiatry, UCL). Before you make a decision, it is important for you to understand why the study is being carried out, and what it will involve. Please take your time to read the following information carefully and decide whether or not you wish to take part. Please discuss it with others if you wish. Please feel free to email us if there is anything that is not clear or if you would like more information. Thank you for reading this.

2. What is the purpose of the research study?

The purpose of this research study is to look at psychological wellbeing and ways of coping in people with misophonia or sound intolerance, and to explore whether there are any relationships between these areas. We are finding this out by asking people to complete an online survey which asks questions about these different aspects.

If we find that there are relationships between how people think and feel and what they do to cope with symptoms of misophonia, then this may suggest that particular types of talking therapy might be helpful for this group.

For example, if we find that people with misophonia who tend to avoid uncomfortable thoughts, feelings and bodily sensations are lower in mood or more anxious, then this may suggest that a newer form of talking therapy, Acceptance and Commitment Therapy, might be helpful for them.

To date, very few studies have looked at whether particular types of talking therapy are helpful for people with misophonia. This study represents the first steps in finding this out.

 3. What is misophonia?

Misophonia is a strong dislike or hatred of particular sounds (such as noises that people make when eating, drinking or breathing), which produces an intense emotional reaction in the person such as anger or rage.

4. Who are we approaching to take part in this study?

We are asking approximately 50 people who meet the following criteria to take part in this study:

i) Aged 18 years or more;

ii) Experiencing self-reported difficulties with misophonia or sound intolerance;

iii) Sufficient ability to read and understand English to complete some online questionnaires.

You are reading this information sheet because you have self-identified that you have been experiencing difficulties with misophonia or sound intolerance.

           5. Do I have to take part?

It is up to you to decide whether you would like to take part in this study. If you do decide to take part in the study then you can stop it at any time without giving a reason and without it affecting any benefits that you are entitled to. A decision to withdraw from the study at any time or a decision not to take part in the study will not affect your medical care or legal rights.

You will be able to download this information sheet to keep - alternatively you can request a copy from Dr Rebecca Gould (r.gould@ucl.ac.uk). If you decide to withdraw from the study after you have completed the online survey then it will be not be possible to withdraw the data you have provided up to that point because all data will be provided anonymously.

           6. What will happen to me if I take part?

If you take part in the online survey, you will be asked a series of questions about your self-reported difficulties with misophonia or sound intolerance, your mood, your satisfaction with life, your ways of coping, and other psychological factors. You will also be asked some basic questions about yourself such as your age, self-identified sex and ethnicity, and education. You will not be asked to provide any identifying information such as your name or contact details.

The online survey will take approximately 30-40 minutes to complete. You can stop the survey at any point, without having to give a reason. If you complete some but not all of the questions in the survey then we would use any information that you provided up to the point that you stopped the survey. If there are particular questions that you would prefer not to answer then you will be able to indicate this in the survey, without having to give a reason. You will only be asked to complete this online survey on one occasion.

7.  What are the possible disadvantages and risks of taking part? 

The risks of taking part could be that you may feel inconvenienced by taking part in this online survey or you may feel bored, irritated, sad or anxious while completing it. Some people may find it upsetting answering questions in relation to their experience of misophonia or their mood. If you find a particular question upsetting, you can choose not to answer it and move onto the next question, take a break from completing the survey by saving your progress and returning to it later, or stop the survey altogether. Your participation in this research study is voluntary and you will be free to withdraw at any point, without it affecting your care or legal rights. If you become distressed and would like information about sources of support with respect to misophonia or mood then you will have the option to skip to the sources of support at the end of the survey or contact Dr Rebecca Gould (r.gould@ucl.ac.uk).

Examples of the type of questions you will be asked in relation to your experience of misophonia are: "How much distress do the misophonic sounds cause you?" and "What would be the worst thing that could happen (to you) if you were not able to avoid the misophonic sounds?".

Examples of the type of questions or statements you will be asked in relation to your mood are: "Are you either extremely anxious or do you avoid specific objects or situations?" and "I was unable to become enthusiastic about anything".

8. What are the possible benefits of taking part?

Whilst there are no immediate benefits for those people participating in this research study, it is hoped that this work will enable us to find better ways of helping people with misophonia or sound intolerance.

9. What if something goes wrong?

If you have a complaint about this study or are unhappy or dissatisfied about any aspect of your participation, we would ask you to tell us about this in the first instance, so that we can try to resolve any concerns and find a solution. If there is a problem or if you have any concerns about the way you have been approached or treated in this survey, then please contact Dr Rebecca Gould, Department of Psychiatry, University College London, Wing A, 6th floor Maple House, 149 Tottenham Court Rd, London W1T 7NF. Tel: 020 7679 9925. Email: r.gould@ucl.ac.uk.

If you remain unhappy and wish to complain formally about any aspect of the way you have been approached or treated during this survey, then please contact the Chair of the UCL Research Ethics Committee at ethics@ucl.ac.uk.

10. Will my taking part in this project be kept confidential?

All of the information we collect about you will be anonymised using a unique identification number so that it will not be possible to identify you from any of your information. Your data will be stored using this unique identification number so that you cannot be identified from it. You will not be asked to provide any personal details such as your name or contact details within the online survey. All data will be kept strictly confidential, and will only be seen by members of the research team.

All of the information you provide such as information about yourself and your responses to the questionnaires will be stored in one of two ways so that we can verify the information at a later date, if necessary. All electronic data will be held on a secure database on a password-protected computer and on University College London's password-protected secure electronic network. All electronic data will be stored at University College London for 10 years, and will be destroyed after this. You will not be able to be identified in any ensuing dissertation or publication.

Please note that assurances on confidentiality will be strictly adhered to unless evidence of wrongdoing or potential harm is uncovered. In such cases the University may be obliged to contact relevant statutory bodies/agencies.

11. What will happen to the results of the research project?

At the end of the study, we will analyse all of your information with other participants' information. Anastasia Raptakis will then present this as part of her MSc dissertation. We will then publish our findings in an academic journal. We will send you a summary of the findings if you request this. You will not be identified in the dissertation or any publication arising from this online survey.

 12. Local Data Protection Privacy Notice

The controller for this project will be University College London (UCL). The UCL Data Protection Officer provides oversight of UCL activities involving the processing of personal data, and can be contacted at data-protection@ucl.ac.uk

This ‘local’ privacy notice sets out the information that applies to this particular study. Further information on how UCL uses participant information can be found in our ‘general’ privacy notice:

For participants in research studies, please click here or go to:

https://www.ucl.ac.uk/legal-services/privacy/ucl-general-research-participant-privacy-notice

The information that is required to be provided to participants under data protection legislation (GDPR and DPA 2018) is provided across both the ‘local’ and ‘general’ privacy notices.

The categories of personal data used will be as follows:

i) Questions about yourself such as your age, self-identified sex and ethnicity, and education.

ii) Questions about your self-reported difficulties with misophonia or sound intolerance.

iii) Questions about your psychological well-being (symptoms of depression or anxiety, satisfaction with life).

The lawful basis that will be used to process your personal data are: ‘Public task’ for personal data and’ Research purposes’ for special category data.

Your personal data will be processed so long as it is required for the research study and for publication of the research findings. We will undertake to anonymise or pseudonymise the personal data you provide, and will endeavour to minimise the processing of personal data wherever possible.

If you are concerned about how your personal data is being processed, or if you would like to contact us about your rights, please contact UCL in the first instance at data-protection@ucl.ac.uk.

13. Will my data be shared with anybody else?

Your anonymised data, not containing personal identifiers, may be used to support other research in the future, and may be shared with other authenticated researchers from organisations such as universities or NHS Trusts in the UK. Your information will only be used by organisations and researchers in accordance with the UK Policy Framework for Health and Social Care Research.

It will not be possible to identify you from your data, and it will not be combined with other information in a way that could identify you. The information will only be used for the purpose of health and care research, and cannot be used to contact you or to affect your care. It will not be used to make decisions about future services available to you, such as insurance.

14. Who is organising and funding the research?

The research is sponsored by University College London.

15. Who has reviewed the study?

All research is looked at by an independent group of people, called a Research Ethics Committee in order to protect participants’ safety, rights, well-being and dignity. This study has been reviewed and been given a favourable opinion by UCL Research Ethics Committee (reference number: 12213-003).

16. Who can I contact for further information?

If you have any questions or require any further information about this study then you can contact Ms Anastasia Raptakis (anastasia.raptakis.20@ucl.ac.uk) or Dr Rebecca Gould, Anastasia Raptakis' MSc supervisor, at: Division of Psychiatry, University College London, Wing B, 6th floor Maple House, 149 Tottenham Court Rd, London W1T 7NF; 020 7679 9925; r.gould@ucl.ac.uk.

 

Thank you for reading this information sheet and for considering taking part in this research study.