Thank you for considering participating in this IRB-approved study (#001185).
I am looking to recruit female patients living with 1 or more of 10 poorly understood chronic pain conditions to participate in a 45-minute survey. This study is undertaken in an effort to better understand the negative interactions you may have experienced when discussing these conditions with your doctors/medical providers.
I am looking for women with one or more of these conditions: interstitial cystitis, irritable bowel syndrome (IBS), vulvodynia, endometriosis, temporomandibular disorders (TMJ), chronic low back pain, chronic tension type headache, chronic migraine, myalgic encephalomyelitis (CFS), or fibromyalgia.
To participate in this study, you must be assigned the sex of female at birth (AFAB) or identify as female, be over the age of 18, read and write in English fluently, and have seen a medical provider AT LEAST ONCE for at least ONE of these conditions. You may reside in ANY country around the world and you DO NOT need to have been formally diagnosed with any of these conditions to participate.
**As a patient who lives with several of these conditions myself, I am looking to learn more about your experiences in an effort to affect positive social change for how we talk about (and how others talk to us about) these conditions. You can learn more about me and this study by watching the YouTube video at this link: https://www.youtube.com/watch?v=FX5UlevMubU
Here is the full consent form, and the survey link is at the bottom.
Overview: You are being asked to take part in a research study at the University of South Florida (IRB Study #001185). The information in this document should help you to decide if you would like to participate. The sections in this Overview provide the basic information about the study. More detailed information is provided in the remainder of the document.
Study Staff: This study is being led by Elizabeth A. Hintz who is a Doctoral Candidate at University of South Florida*.* This person is called the Principal Investigator. She is being guided in this research by Dr. Steven R Wilson. Other approved research staff may act on behalf of the Principal Investigator.
Study Details: This study is being conducted at University of South Florida*.* The purpose of the study is to understand how patients with one or more chronic overlapping pain conditions (COPCs) experience negative talk from others and with what outcomes. Your participation in this study will involve completing an online survey which will take no longer than one-hour to complete in which you will be asked to recall interactions you have had in which you have discussed your COPC(s) with others.
Eligibility: You are being asked to take part because you:
(a) are over the age of 18,
(b) were assigned the sex of female at birth (or you identify as female),
(c) have either: (a) been diagnosed with one of the conditions on the list below, (b) sought a diagnosis for one of the conditions on the list below, or (c) be currently seeking a diagnosis for one of the conditions on the list below. In other words, you must have visited a medical provider AT LEAST ONCE for at least one of these conditions: interstitial cystitis, irritable bowel syndrome (IBS), vulvodynia, endometriosis, temporomandibular disorders (TMJ), chronic low back pain, chronic tension type headache, chronic migraine, myalgic encephalomyelitis (CFS), or fibromyalgia; and,
(d) are able to read and write in English fluently.
Voluntary Participation: Your participation is voluntary. You do not have to participate and may stop your participation at any time. There will be no penalties or loss of benefits or opportunities if you do not participate or decide to stop once you start.
Benefits, Compensation, and Risk: We do not know if you will receive any benefit from your participation. There is no cost to participate. You will not be compensated for taking this survey. This research is considered minimal risk. Minimal risk means that study risks are the same as the risks you face in daily life.
Confidentiality: Even if we publish the findings from this study, we will keep your study information private and confidential. Anyone with the authority to look at your records must keep them confidential.
****If you are interested in participating, please take the survey here. My contact information is on the first page of the survey if you have any questions or concerns about the study: https://usf.az1.qualtrics.com/jfe/form/SV_0HcPrpU3TQVELOu?Q_CHL=social&Q_SocialSource=reddit