Participant Information Sheet
 
Title of Project: Exploring Individuals with Complex Regional Pain Syndromes’ (CRPS) Health Literacy and Experiences with Opioid Information in Opioid Decision Making: a thematic analysis
 

You are being invited to take part in a research project. You do not have to take part if you do not want to. 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. Ask us if there is anything that is not clear or if you would like more information. Take time to decide whether you wish to take part.
 
1. What is the purpose of the project?

The purpose of this project is to understand the experiences of individuals living with CRPS, in regard to opioid information and decision making. It is not yet explored how opioid information shapes opioid decision making amongst individuals with CRPS.
Individuals with CRPS may take opioids for the treatment of their pain, however research outlines the risks and downsides to this. For those wanting to withdraw from taking opioids, accessing information and interactions with health care professionals are vital to enable these decisions.
It is important to explore individuals’ experiences, and how this information is understood and can be used. This project will also consider how people understand and apply health information, as an important influential factor in health outcomes and decision making. This is a student led project being conducted for the purpose of completing a degree programme.

 
 
2. Why have I been invited to take part?

You should only take part if the following conditions apply to you: 

Around a total of 15 participants will be recruited.
 

No – it’s up to you. You can ask questions about the project before deciding whether to take part. If you do not want to take part that is OK.
If you wish to take part:

You will be asked to complete an online questionnaire via Question Pro, which will collect some brief demographic data (such as your age, gender, ethnicity, and the county you reside in, as this helps us understand healthcare access across different counties), as well as requiring you to respond to questions which will explore how you access and understand health information.
Then you will be interviewed at an agreed suitable date and time, to discuss your experiences of CRPS, opioid information, and decisions you have made, regarding opioids.
The interview will take place using Microsoft Teams and should take approximately 60 minutes. You will be offered regular breaks as necessary.
The interview will follow the structure of an interview schedule, which provides questions to be discussed, but also means that there is freedom to discuss other things that may come up in conversation. Questions in the interview will be asking about your experiences of living with CRPS, accessing and understanding health information, health care professional interactions, support you’ve received or accessed, with a focus of opioids.
It is possible the topics may be sensitive, as it will involve discussing your lived experiences of CRPS, and discussions around opioids.  Please remember, you have the right to decline to answer any questions you do not want to and you can also ask to pause or stop the interview at any time, and we can reschedule if needed. With this in mind, please consider your privacy when being interviewed so that nobody can overhear your answers. Before the interview we will discuss what to do if privacy is compromised and how to answer questions or respond to other people if they interrupt the project session in any way (e.g. someone else takes the phone or appears in the video feed). During the interview we will ensure privacy is maintained by the researcher being alone, with no one being able to hear or see the interview.
 

 
5. Will I be photographed or video/audio recorded and how will the recorded media be used? 

You do not have to be audio/video recorded but you cannot take part in the project if you are not happy for your voice/image to be recorded.  You are free to stop the recording at any time, but will not be able to take part in the project if you do so.
The photographs, audio and/or video recordings of your activities made during this project will be used only for analysis.No other use will be made of them.
We will use a pseudonym so that you cannot be directly identified from the interview transcripts. Interview recordings will be deleted once the interview transcript has been verified as accurate and an evaluation has determined that it has no further value.

Taking part in the project is not anticipated to cause you any disadvantages or discomfort. The potential psychological harm or distress will be the same as any experienced in everyday life.
However, questions included in this project require you to reflect on your wellbeing.
 
You should not take part in the project if you think the topic of conversation will be upsetting or distressing to you. On the day, if you become upset or distressed, you can refuse to answer questions or ask to pause or stop the interview at any time. If taking part in this project leaves you feeling upset or distressed, please tell the investigator and contact one of the organisations listed below for help and advice. It is recommended that you leave a name and number for a “safe person” who the investigator can talk to if you become upset or distressed. This can be a family member, friend or a staff member from a service you access. We will only speak to this person if you say it is okay and we will delete their number after we have spoken to them.
 
If you feel worried or in low mood, we would like to point out that there are several sources of advice or help which are free and readily available to you and which may provide useful. Or if taking part in this project has negative effects on you; please seek help and advice from support services such as:
 

 

Samaritans
Samaritans works to make sure there's always someone there for anyone who needs someone. It provides emotional support to anyone in distress, struggling to cope, or at risk of suicide throughout the UK & Ireland.
Contact details:
Telephone number: 116 123
Website: www.samaritans.org

Shout 
Shout is the UK's first and only free, confidential, 24/7 text messaging support service for anyone who is struggling to cope.
Contact details:
Text: The word ‘SHOUT’ to 85258
Website: https://giveusashout.org/

Burning Nights
Burning Nights CRPS Support is a national UK charity working to improve the quality of life for people who are affected by Complex Regional Pain Syndrome. Their confidential services can provide information and support to those living with CRPS, and the people around them.
Contact details:
Telephone number: 01663 795055 10am – 4pm (excludes bank holidays)
Website: https://www.burningnightscrps.org/

The Brain Charity
The brain charity offer support for all forms of neurological conditions, including CRPS. This service offers classes and groups to attend, legal advice and a counselling service. They provide practical help, emotional support and social activities.
Contact details:
Telephone number: 0151 298 2999
Website: https://www.thebraincharity.org.uk/

CRPS UK
CRPS UK are a patient led organisation who offer support, education, assist with research and raising awareness of CRPS. They have downloadable information available on their website with various topics relating to CRPS.
Contact details:
Website: https://crps-uk.org/ 
 

 
7. Are there any benefits in taking part?

There will be no personal benefit to you, but it is hoped that this project will lead to better understanding about the experiences of individuals living with CRPS in regard to opioid information and decision making, along with HL. This research will provide potential for further research, as well as potential for the development of accessible health information, improving health outcomes.

 
8. What information will be collected and what will happen to this?

The information you give us, or that we collect from you, from which you can be identified (e.g. from identifiers such as your name, date of birth, audio recording etc.), is known as personal data. Taking part in this project will involve the collection/use of your personal data. The data collected/used will include more sensitive categories of personal data (special category personal data) such as your race or health. We will keep all information about you safe and secure.  People who do not need to know who you are will not be able to see your name or contact details. The personal data collected will include:

Once we have finished the study, we will keep some of the data so we can check the results. Identifiable project data will be stored securely at LJMU for the duration of the project - unless there is no need for the data to be identifiable, at which point it will be made anonymous. Data (including consent forms) that needs to be identifiable, will be stored securely at LJMU for three years after publication or public release of the work. 
We will not attempt to capture the IP address or any other information that is not voluntarily provided. Data may be stored on backups or server logs beyond the timeframe of this project. 

 
 
Limits to confidentiality:

Please note that confidentiality will be maintained as far as it is possible, it may be breached if there are any compelling and legitimate reasons to do so. For example if there is any concern of anyone being in danger of harm, relevant statutory bodies/agencies may be contacted by the University.
If this was the case we would inform you of any decisions that might limit your confidentiality.  
 

 
9. What are your choices about how your information is used?

The findings from the project will be written up in a dissertation, academic publications, and presentations.

We will write our reports in a way that no-one can work out that you took part in the project and we would like your permission to use direct quotations but without identifying you in any outputs. Identifying details like names will be redacted. Please note that confidentiality in outputs may not be guaranteed; for example, due to the limited size of the participant sample, the position of the participant or other information included in reports, participants might be indirectly identifiable in transcripts and reports. The investigator will work with you in attempt to minimise and manage the potential for indirect identification of you and will seek explicit consent from you ahead of any publication if the investigators think there is the potential for you to be indirectly identifiable. However, you should not take part if the potential to be indirectly identifiable in outputs is not acceptable to you.

 
11. Data Protection 

Liverpool John Moores University if the data controller with respect to your personal data and as such will determine how your personal data is used in the project. The University will process your personal data for the purpose of the project outlined above. Research/evaluation is a task that is performed in the public interest. You can find out more about how we use your information:

The online platforms, MS Teams and QuestionPro may collect personal data (e.g. via the IP address, backups of project data). This makes them a data controller with respect to personal data and, as such, will determine how personal data is used. Please see their privacy notice:
 
MS Teams: Microsoft Privacy Statement – Microsoft privacy
 
QuestionPro: QuestionPro Privacy Policy | QuestionPro Help Document
 
The LJMU Data Protection Officer is Tina Forrester (DPO@ljmu.ac.uk)
 

This project is organised by Liverpool John Moores University. 

 
13. Whom do I contact if I have a concern about the project or I wish to complain?

If you have a concern about any aspect of this project, please contact Dr Kate Atherton, adn we will do our best to answer your query. You should expect a reply within 10 working days, If you remain unhappy or wish to make a formal complaint, please contact the Chair of the School of Psychology Research Ethics Committee at Liverpool John Moores University who will seek to resolve the matter as soon as possible. 
Chair, Liverpool John Moores University School of Psychology Research Ethics Committee; Email: psyrec@ljmu.ac.uk; Tel: 0151 231 2121; Research Innovation Services, Liverpool John Moores University, Exchange Station, Liverpool L2 2QP

 
14. Contact details

Principal investigator: Kiera Knowles
LJMU postgraduate student
LJMU Email address: K.J.Knowles@2024.ljmu.ac.uk

LJMU School/faculty: School of Psychology
LJMU Central telephone number: 0151 231 2121
Name: Dr Kate Atherton Supervisor’s LJMU Email address: K.Atherton@ljmu.ac.uk 

 

Please consider retaining a copy of this information sheet for your future reference.