Participant Information and Consent

QMUL Research Ethics Committee Approval ID Number: QMERC.20.371

You are invited to participate in a research study. Before you decide whether or not you wish to participate in this study, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully. Please ask questions if anything is not clear or you would like more information. You do not need to give a reason if you do not wish to participate.

  

What is the purpose of the study and what would taking part involve? 

My name is Amy Dowse and I am a PhD student at Queen Mary University of London. My research focuses on the use of technology to support people who experience anxiety, either alone or with chronic pain.

The purpose of this study is to gain an understanding of people’s opinions on the willingness, motivators, and barriers associated with using apps for anxiety. The questions should take approximately 10 minutes to complete. 

 

Who can take part?

This study is open to anyone 18 or over who lives in the UK and experiences anxiety. You can either have a formal diagnosis of anxiety from a medical professional or be self-diagnosed.

 

Do I have to take part? 

It is up to you whether you wish to take part. If you do decide to take part, you will be free to withdraw at any time up until you submit the questionnaire, without needing to provide a reason. There will be no penalties or detrimental effects to you.

Answers for each section will be saved as you progress through the questionnaire. However, if you do not submit your answers at the end of the questionnaire any entered answers will be deleted and will not be used by the researcher. Therefore, if you begin the questionnaire and then decide you no longer wish to take part, you can exit the questionnaire and your answers will not be stored and will not be used as part of the research.

 

What are the possible benefits of taking part?

Whilst there will be no direct or immediate benefits to participating, your answers will influence further research into the development of an app to support people who experience anxiety and chronic pain.

 

What are the possible risks of taking part?

The questions within the questionnaire are based on the topic of anxiety, you will be asked to consider your answers to the questions based on your experiences of anxiety. This could potentially cause you some distress. Information on where you can access help if you feel distressed after completing the questionnaire is provided at the end of the page and at the end of the questionnaire.

 

You are able to take a break from completing the questionnaire and return to it later if needed. There is an option at the bottom of the questionnaire to ‘Finish Later’. Simply click on this button and save the displayed web address to access your started questionnaire at a later date.

 

Potential to take part in further research

At the end of the questionnaire, you will be given the opportunity to provide your email address if you would be interested in being involved in future research projects focusing on the use of technology to support people who experience anxiety. If you do provide your email address this will be separated from the data from the questionnaire before analysis takes place, meaning your answers will remain anonymous.

Whether you choose to provide your email address for contact about future studies does not affect the current study. If you choose to provide your email address, it will only be used by the researcher (Amy Dowse) to contact you about other studies focused on technology and anxiety.

 

What information will you be collecting about me?

The questions will ask you about your views on different factors associated with the opportunities, barriers, and motivators when using an app for anxiety. There will also be some demographic, anxiety and chronic pain questions asked so that responses from different categories of people can be compared. 

Completion of the questions within the questionnaire are not mandatory, you can choose to skip any questions.

Most questions within the questionnaire require you to select an answer from a predetermined list. However, some questions are open ended. These are included so that you have the opportunity to provide a fuller, more accurate answer to the question if you do not feel that the pre-provided answers are relevant to you. Please do not include any personal data within these free text answer boxes.   

 

How will my data be stored and how long will it be kept? 

Two types of data will be collected during this study – demographic and study data.

 

Demographic Data

The demographic data that will be collected during this study includes age, gender and health-related information (how long you have experienced anxiety and/or chronic pain). This will not be enough data to identify you.

You may also provide your email address if you choose to be informed of future research studies. If an email address is provided this will be stored separately from any other data submitted as part of this study.

 

Study Data

The study data refers to the answers to each of the questions within the study. For example, you will be asked to state to what extent you agree with a certain statement.

 

Both demographic and study data will be stored securely. Data will be stored on a password-protected laptop within a password-protected file. The data will be stored in a fully anonymised format. The fully anonymised data may be shared with other researchers to support further research in the future.

 

All data will be handled in accordance with the General Data Protection Regulation 2018. You will not be able to be identified in any ensuing reports or publications. Data will be stored for five years before being destroyed in accordance with Queen Mary’s Records Retention Schedule. 

 

Who can I contact if I have any questions about this study?

If you have any questions or would like to know more about my research, please email me: a.h.dowse@qmul.ac.uk

 

What should I do if I have any concerns about this study? 

If you have any concerns about the manner in which the study was conducted, in the first instance, please contact the research supervisor, Professor Paul Curzon: p.curzon@qmul.ac.uk.

If you have a complaint that you feel you cannot discuss with the researchers then you should contact the Research Ethics Facilitators by e-mail: research-ethics@qmul.ac.uk

When contacting the Research Ethics Facilitators, please provide details of the study title, description of the study, QMERC reference number (QMREC2018/48/076), the researcher(s) involved, and details of the complaint you wish to make. 

 

Where to find help

If you would like further support for anxiety issues, please visit:

https://www.nhs.uk/mental-health/nhs-voluntary-charity-services/charity-and-voluntary-services/get-help-from-mental-health-helplines/

 

This part of the survey uses a table of questions, 

Please tick each of the below statements if you agree with them to provide informed consent.   
1
I confirm that I have read the Participant Information for this study, shown above. I have had the opportunity to consider the information, ask questions and have had these questions answered satisfactorily.
I understand that my participation is voluntary and that I am free to stop taking part in the study at any time without giving any reason and without my rights being affected.
I understand that the information collected about me will be used to support other research in the future, and it may be shared in anonymized form with other researchers.
I understand that my data will be securely stored in accordance with the data protection guidelines of the Queen Mary University of London for five years in anonymised form.
I understand that following the submission of my questionnaire I will not be able to request withdrawal of the information I have provided.
If I choose to provide my email address, by giving it via this form, I agree to be contacted about other research studies in the future.
I am aged 18 or over.
I currently live in the UK.
I agree to take part in the above study.