Thank you for your interest in participating in this survey study. This study is administered by Derick Luu, Tara Packham, Evelyne Durocher and Sandra Moll from the School of Rehabilitation Science and Jennifer Nash from the Faculty of Health Sciences at McMaster University in Hamilton, ON. The purpose of this study is to understand the beliefs, attitudes and, perceptions of persons with Complex Regional Pain Syndrome regarding chiropractic care.
This on-line study has three parts. Part one contains demographic questions about yourself and your symptoms. These questions should take 3-4 minutes to complete, and will not include any personal identifiers, to keep your participation anonymous. In part two, we will give you the beginning of a story, and ask you to write the ending. We’d like you to write at least 100 words, which is usually about 10 sentences, but you can write as much as you like. We think this will take most people about 10 minutes, but you can spend more or less time on your story. Part 3 of the survey will ask about your own experiences with treatment regarding CRPS.
Consent
Please carefully read the following consent information in regards to any associated risks or harms associated with the survey, how confidentiality and anonymity will be handled, withdrawal procedures and how to obtain information about the survey’s results.
You are being invited to participate in a research study to explore the beliefs, attitudes, and perception of chiropractors as a persons living with Complex Regional Pain Syndrome (CRPS). This study is a joint effort of clinicians, researchers, and study participants interested in CRPS and qualitative research.
WHAT IS THE PURPOSE OF THIS STUDY?
We want to understand how persons living with CRPS perceive chiropractic treatment as well as what have their experiences been with chiropractic care, if applicable. may help from a knowledge translation aspect by providing information on what persons with CRPS think about chiropractic care. This insight can be used to develop patient decision aids and tailored intervention programs to optimize chiropractic care for those living with CRPS. Given chiropractors are easily accessed by the public and can offer a range of non-pharmacological interventions, there is an opportunity to consider how this group of health professionals can contribute to early intervention to mitigate long-term disability To create this knowledge, we are using a relatively new way of generating qualitative data called story completion. All of the stories will be used to construct overall themes based on what people write.
WHAT WILL MY RESPONSIBILITIES BE IF I TAKE PART IN THE STUDY?
We are inviting you to take part in an online study. We think this will take less than 15 minutes of your time. You will be asked to 1) complete a few demographic questions to tell us about yourself, your CRPS symptoms, and your treatment experiences, and then 2) to finish writing a short story. We will give you the first sentence and then you will be asked to write what happens next.
WHAT ARE THE BENEFITS OF PARTICIPATING IN THIS STUDY? WILL I BE PAID TO PARTICIPATE?
If you agree to take part, there is no direct financial compensation. The information gained from this study will help to fill in knowledge gaps in research about chiropractic care for CRPS. You may benefit from knowing that you played an important role in helping to advance the research field of CRPS.
WHAT ARE THE RISKS OF PARTICIPATING IN THIS STUDY?
The risks of participating in this study are minimal. You may feel anxious about whether your story is the same or different from others living with CRPS. You may have emotional memories about your experience with CRPS that writing your story brings to the surface. We encourage you to reflect and engage with these feelings and perhaps talk to a friend, family or support person about them. We want you to know that we will not be able to identify you, as the survey is completely anonymous.
HOW MANY PEOPLE WILL BE IN THIS STUDY?
We are hoping to have at least 60 participants in the study. This will help us to generate rich data from which to build themes, because we will have many stories to consider from different people and different walks of life.
WHAT INFORMATION WILL BE KEPT PRIVATE?
We will not collect any identifying information. We will ask you to choose a pseudonym that we can use if we take a quote from your story to share when we are writing up the results of our study.
HOW LONG WILL MY INFORMATION BE KEPT FOR?
Our research team plans to conduct future research regarding this topic, thus we will be keeping the anonymized responses from this study for 10 years. Only members of the research team will have access to the responses and it will be kept in a safe and secured online encrypted database behind McMaster University’s firewall.
WHAT IF I CHANGE MY MIND ABOUT BEING IN THE STUDY?
Your participation in this study is voluntary. It is your choice to be part of the study or not. If you decide to be part of the study, you can decide to stop (withdraw), at any time, even after starting to write your story. We will not use stories that are shorter than 100 words, so if you stop part way through, we will assume you do not want to participate. If you want to withdraw your story after you have submitted your survey, you will need to contact Derick Luu at luud1@mcmaster.ca or Tara Packham at packhamt@mcmaster.ca or 905-525-9140 x27812 and indicate your pseudonym. This will be possible until the survey has closed (anticipated to be in August 2023).
HOW DO I FIND OUT WHAT WAS LEARNED IN THIS STUDY?
We expect to have this study completed by approximately August 2023. If you would like a brief summary of the results, please let us know how you would like it sent to you.
IF I HAVE ANY QUESTIONS, WHOM CAN I CALL?
If you have any questions about the research now or later, please contact Derick Luu at luud1@mcmaster.ca or Dr. Tara Packham at 905-525-9140, x27812 or packhamt@mcmaster.ca.
The consent form above is also available for download:
https://docs.google.com/document/d/1wKzCbHU77oRhspSI-Wa3r_1oMLL6bA3kdOWV4kViEds/edit?usp=sharing
This study has been reviewed by the Hamilton Research Ethics Board (HiREB). The HiREB is responsible for ensuring that participants are informed of the risks associated with research, and that participants are free to decide if participation is right for them.
For the purposes of ensuring proper monitoring of the research study, it is possible that a member of the Hamilton Integrated Research Ethics Board affiliated sites, or regulatory authorities, may consult your research data. By participating in this study, you authorize such access. By participating in this study you do not give up any rights to which you may be entitled under the law.
If you have any questions about your rights as a research participant, please call the Office of the Chair, Hamilton Integrated Research Ethics Board at 1.905.521.2100 x 42013. If you have any questions about the survey content, please contact Dr. Tara Packham at packhamt@mcmaster.ca or Derick Luu at luud1@mcmaster.ca.
You can also download a copy of this page for your records at this link:
https://docs.google.com/document/d/1oEhbLSjnIr1z7L18vvUgFHCGPG9lylWy2dvCmDCafeI/edit?usp=sharing
By clicking the ‘next’ button below, you will be providing your consent to participate and will be taken to the survey questions and story stem. If you do not wish to continue to the study, please exit the webpage now.
