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Investigating the Influence of Pain and Readiness to Change on Attitudes towards Shared Decision-making in Chronic Pain Patients.
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Participant Information Sheet

University of the West of Scotland

University of the West of Scotland

Participant Information Sheet


Investigating the Influence of Pain and Readiness to Change on Attitudes towards Shared Decision-making in Chronic Pain Patients.

You are being invited to take part in a research study. Before you decide, 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 and discuss it with others if you wish. Please ask me if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part.

What is the purpose of this study?

The purpose of the study is to investigate the predictors of acceptance of shared decision making by patients with chronic pain.

Why have I been chosen?

You have been chosen to take part in this study because you are an individual with chronic pain which makes you a key stakeholder for the current study.

Do I have to take part?

It is up to you to decide whether or not to take part. If you do decide to take part you will be given this information sheet to keep and be asked to sign a consent form. If you decide to take part you are still free to withdraw only up until the point that the questionnaire is submitted without giving a reason by contacting a member of the research team with the unique identifier you will create and give as part of the study.

What will happen to me if I take part?

You will be asked to fill out 4 surveys either online or paper versions. The time to complete all questionnaires will take around 30-40 minutes. You do not need to fully complete this survey just now, you can stop and resume the survey whenever you like. After the next page, at the top of the screen will be green text which will give you a code to remember if you want to stop the survey and complete it another time. The next time you complete the survey at the top in green text it will say "resume participation" click on the arrow button next to it and input the code you were given last time. The questionnaires will ask for some demographic information and assess your pain type, duration, intensity, persistent baseline level and breakthrough levels of pain, readiness to change, attitudes to shared decision making and your decisional needs.

What are the possible disadvantages and risks of taking part?

There are no disadvantages of taking part, however there are some questions which ask you to report on your chronic pain. Due to the nature of the topic, reflecting on your chronic pain and wellbeing may be difficult and upsetting. If the study raises any concerns for you about your chronic pain, you should contact your health care provider or speak to a family member or friend. Alternatively, you may wish to contact a chronic pain helpline. See: www.painconcern.org.uk for helplines in the UK. You will also find chronic pain support and advice contact information at the end of the study on the debrief sheet.

What are the possible benefits of taking part?

It cannot be guaranteed that you will experience any direct benefits from taking part in the research, although the responses from the interview may be used to inform the design and implementation of a decision aid for chronic pain which would better support/implement standard practice of shared decision making and decision aids within the UK and also help patients with chronic pain with their treatment. Following successful evaluation and review, the aim will be to spread, adapt and scale-up the methodology and product for use in other NHS Boards.

Data Protection Privacy Notice

The data controller for this project will be University of the West of Scotland (UWS). The UWS Data Protection Office provides oversight of UWS activities involving the processing of personal data, and can be contacted at dataprotection@uws.ac.uk. UWS’s Data Protection Officer is Andy Connor and he can also be contacted at dataprotection@uws.ac.uk.

Your personal data will be processed for the purposes outlined in this notice. The legal basis that would be used to process your personal data will be the provision of your consent. You can provide your consent for the use of your personal data in this project by completing the consent form that has been provided to you.

Your personal data will be processed so long as it is required for the research project. If we are able to anonymise or pseudonymise the personal data you provide we will undertake this, and will endeavour to minimise the processing of personal data wherever possible.

If you are concerned about how your personal data is being processed, please contact UWS in the first instance at dataprotection@uws.ac.uk. If you remain unsatisfied, you may wish to contact the Information Commissioner’s Office (ICO). Contact details, and details of data subject rights, are available on the ICO website at: https://ico.org.uk/for-organisations/data-protection-reform/overview-of-the-gdpr/individuals-rights/

What will happen to the results of the research study?

Only anonymised data will be shared outside of the research team. Data will be stored at UWS, either in a locked filing cabinet or on a password protected computer for up to ten years after the study finishes, after which it will be destroyed. The findings from this study will be written up as part of the researcher’s PhD thesis, as peer reviewed journal articles, and/or presented at conferences/seminars. All data will be reported anonymously.

Who has reviewed the study?

UWS MCS Ethics Committee. Ethics approval number: 2019-8446-6985

Contact for further information

If you require any further information please contact:

Researcher:
Abbie McGuire
University of the West of Scotland,
High Street,
Paisley,
PA1 2BE
UK
Telephone: 07541533965
E-mail address: Abbie.McGuire@uws.ac.uk

Research Supervisor:
Elizabeth Boyle
University of the West of Scotland,
High Street,
Paisley,
PA1 2BE
UK
Telephone: 0141 848 3783
E-mail address: Liz.Boyle@uws.ac.uk

Thank you for taking part in this study.