Take part in our field-testing study!
 

Name of Researcher: Miss Tess Rugg

Contact details of Researcher: i-pain@bath.ac.uk

Why are we doing this research project?  

 

Living with chronic pain can change how young adults see themselves, yet there is no reliable way to measure those identity changes. We have created a new questionnaire (measure) based on previous research, as well as ideas and wording suggested by people your age. The next step is to field-test the survey with a larger group to make sure it really works, which is what this research project is for.

Once tested, the questionnaire will be finalised, and this version will help researchers understand how living with chronic pain affects identity and give health teams a tool to spot who might need extra support. Your input in this project moves the questionnaire from a draft to something useful in real-world clinics and future studies.

Who can take part in this project?

 

You can take part if you are all of the following:

• A young adult aged 16-24

• Living with chronic pain for longer than 3 months (either continuously or intermittently)

• Are fluent in English

• Have access to the internet

Do I have to take part?

No. It is up to you to decide if you want to take part. No one will mind if you say no. If you say yes you can still change your mind later, without telling us why.

If you do decide to take part in the project, we will ask you to tick a box to say you agree to take part.

What would taking part involve? 

 

Once you have agreed to take part, you will be shown a demographic survey which will ask you some questions about you. Next, you will complete a set of questionnaires, including our draft questionnaire and some other questionnaires that include topics such as mental health, and chronic pain.

You will be able to skip any questions you do not want to answer.

After completion, some people will be invited by email to repeat our draft questionnaire two weeks later. This helps us check that the questionnaire gives steady results when nothing big has changed. If you get chosen for this, you won’t have to fill in the other questionnaires again, just our draft identity questionnaire. This follow-up is completely optional. If you choose not to do the retest, nothing changes, your first questionnaire answers still count fully in the study.

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What are the benefits of taking part?

 

There are no specific benefits of taking part in the project. However, any information that you and other people taking part in this project provide will help us to finalise our questionnaire. The final questionnaire will help researchers and clinicians understand identity-related challenges and offer better support for young people living with chronic pain.

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What are the possible disadvantages and risks of taking part? 

 

We don’t expect any disadvantages to you taking part in the project. If the survey asks a question that you do not want to answer for any reason, you can choose not to answer. If the questions that you are asked make you feel emotional or vulnerable then we can provide you with some resources where you are able to get support at the end of the survey. If you do not complete the survey, please do feel free to email us for this information.

Who will have access to the information that I provide? 

 

Only the research team (and University governance staff where appropriate) will be able to access any information that you provide. This information will be kept safe and treated as confidential.

What will happen to the data collected and results of the project? 

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Following rules set out by the University of Bath, and current UK data protection legislation, we will keep the information you provide and any other records we have of you taking part in the project (like your consent form) safe and secure for a minimum 10 years, after this, the information will be destroyed.
The email address you contacted us from prior to taking part will be kept in a password protected file on a secure University hard drive, completely separate from any of your data. We will only use your email address again to contact you about this study, and if you are selected for the questionnaire retest. Your email address will be removed from our file two weeks after your full participation.

The answers you give will be considered alongside information provided by other young adults with chronic pain and the results will be used to refine and finalise the identity questionnaire. However, your answers will not be able to be identified to you. After the project has finished, we can also provide you with a summary of the project findings if you would like. The summary will not include any names and will only show the overall findings of the project. It would not include information relating to any particular young adults in the project.

How can I withdraw from the project?

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If you no longer wish to take part in the project after you have started the survey, you just need to press the X at the top of your browser which will close the survey. Only responses that have been fully completed and submitted will be used in this project. Once your responses have been submitted, we are unable to identify you so we will not be able to remove your data.

University of Bath privacy notice

The University of Bath privacy notice can be found here: https://www.bath.ac.uk/corporate-information/university-of-bath-privacy-notice-for-research-participants/. 

What happens if there is a problem?

If you are worried or unsure about any part of the project, you should ask to speak to the researchers who will do their best to answer any questions. If they can’t help, or if you want to make a complaint regarding the project, please contact the Research Governance and Compliance Team at research-ethics@bath.ac.uk.

Are you interested?

Thank you for your interest in this project. Please contact the researchers if you would like more information, or if you would like to take part please register your interest here: https://uniofbath.questionpro.eu/painIDsignup 

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Name of Researcher: Miss Tess Rugg

Contact details of Researcher: i-pain@bath.ac.uk

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Name of Supervisor: Prof Abbie Jordan
Contact details of Supervisor: pssalj@bath.ac.uk 

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