Due to extremely high uptake in lived experience communities this survey is now closed.
Title: What is a pain coach?
Chief Investigator: Professor Cormac Ryan
Researchers: Dr Joseph Parsons, Dr Rebecca Hunter
Hello, my name is Cormac Ryan and I am a Professor in the School of Health and Life Sciences, Teesside University. I am undertaking a research project and I would like to invite you to take part. Before you decide if you want to please read the following information and discuss it with others if you wish. Please contact one of our research associates (Dr Joseph Parsons, 07445 159 654, joe@paind.com and Dr Rebecca Hunter, rebecca@paind.com), or chief investigator (Professor Cormac Ryan, 01642 738 253, c.ryan@tees.ac.uk) if you have any questions.
The term “pain coach” is currently unregulated. This means anyone can call themselves a pain coach regardless of their training or background. Pain coaches in the literature range from clinicians with 20+ years of experience in pain management, to individuals with 3 hours of training. This work seeks to interview/survey both chronic pain patients and NHS pain clinic staff to assess their perception of what the role of a pain coach should be, and what training would be required to achieve that. In this way, the term pain coach can achieve a degree of standardisation and this work can lay the foundation for development of future training courses for pain coaches.
You have been invited because I believe you are someone who has lived with chronic pain for at least 6 months.
To be able to take part though you must be:
Unfortunately, you can't take part if you are a clinician already involved with the study or have an affiliation with Oso Pain Management Ltd (PAIND) who are employers of Dr Joseph Parsons and Dr Rebecca Hunter.
No, it’s up to you if you want to, or not.
We would like you to participate in a short anonymous survey to answer questions about what a pain coach is or should be.
Upon completion of the survey, you will be offered the opportunity to complete a 30-60 minute interview where you will be invited to expand on your survey answers. This interview will be conducted via video conferencing software such as Microsoft Teams.
The risks for participants in the study are low. For some individuals with pain, discussing the role of a pain coach may involve recounting their own experiences with coaches or other healthcare practitioners which can be upsetting for some people. In order to address this factor, the questions have been designed to be highly focused around coaches rather than the person’s pain experiences. Also, interviewers and study staff are either health care professionals or individuals with lived experience of chronic pain who are experienced in discussing chronic pain with people who have chronic pain in a sensitive, empathic, and supportive manner. If you do become upset, you will be directed to the following online support (https://painconcern.org.uk/). Other resources to support your daily life with persistent pain are available here (https://painassociation.co.uk/, https://www.affasair.org/, https://action-on-pain.co.uk/). We have tried to minimise the time burden by reducing the survey time to approximately 10 minutes.
There are no direct benefits from participating in this research project. However, your input could help with the development of an accredited training course for pain coaches. This could prevent individuals from calling themselves pain coaches with no training, potentially risking harm to patients.
Survey consent
Consent to share your survey results with the research team is implied by completion and submission of the online form. You will remain anonymous throughout this process and no identifiable data will have been collected about you during the survey process.
Interview consent
Professor Cormac Ryan will keep your signed Consent Form within a password-protected folder on a server within Teesside University. As this is an important record this will be kept indefinitely.
Data Collection and Storage
All other information collected will be stored indefinitely on a password-protected server within Teesside University and will be accessible by Professor Cormac Ryan, Dr Joseph Parsons and Dr Rebecca Hunter.
Interview data will be recorded with an encrypted Dictaphone and transcribed. The non-identifiable research data will be stored indefinitely on a secure password-protected server at Teesside University. This is in case other scientists wish to raise questions about the results that need checking against the dataset. In the event that the study is published in a scientific journal, the non-person identifiable research dataset may be made publicly available (for example, as a supplement to the journal article, or stored on an on-line scientific data repository).
If you do choose to take part in this interview section of the study, we will need to use information from you for this research project.
This information will include your name and contact details. People will use this information to do the research or to check your records to make sure that the research is being done properly.
People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead.
Personal data including special category data obtained for the purposes of this research project is processed lawfully in the necessary performance of scientific or historical research or for statistical purposes carried out in the public interest. Processing of personal data including special category data is proportionate to the aims pursued, respects the essence of data protection and provides suitable and specific measures to safeguard the rights and interests of the data subject in full compliance with the General Data Protection Regulation and the Data Protection Act 2018.
We will write our reports in a way that no-one can work out that you took part in the study.
Should any abusive or unprofessional behaviours or actions be disclosed and/or discovered then confidentiality will be breached and the academic supervisor (in the first instance) will be informed.
If you decide to take part, you can withdraw at any point before or during the survey, without giving a reason, by closing the webpage. However, once you have submitted the survey you cannot withdraw it as it is submitted anonymously. There will be no negative impact on you if you choose not to take part or to withdraw from the study. You can withdraw from the interview part of the study up to 1 week after your interview by contacting either Dr Joseph Parsons or Dr Rebecca Hunter using the contact details at the bottom of this information sheet and quoting your participant ID number (at the top of first page of this information). After this point your interview will be made completely anonymous and it will no longer be possible to withdraw it.
If you wish to discuss the study with someone outside of the research team who has knowledge of the study or if you wish to make a complaint that cannot be resolved by the research team please contact the chair of the School of Health and Life Sciences Research Ethics Committee Professor Meez Islam (M.Islam@tees.ac.uk).
Should you require a version of the materials in Welsh, you should request it from the research team.
This study has been approved by the School of Health and Social Care, Research Ethics Subcommittee.
Oso Pain Management Ltd are the funders of this study and intend on developing pain coaching courses in future, informed by this work.
Thank you for reading this information sheet and considering whether or not to take part in this study. If you would like to take part then please contact either Dr Joseph Parsons at joe@paind.com or Dr Rebecca Hunter at rebecca@paind.com
You can find out more about how we use your information:
Unfortunately, you can't take part if you are a clinician already involved with the study or have an affiliation with Oso Pain Management Ltd (PAIND) who are employers of Dr Joseph Parsons and Dr Rebecca Hunter.