RESEARCH PROJECT:
Adverse Childhood Experiences, Dissociation, and Alexithymia as Predictors of Health-Related Quality of Life in Individuals with Autoimmune Disease
Valerie K. Johnson
Principal Investigator
STATEMENT OF INFORMED CONSENT/ASSENT
To be read and signed by Participant
I understand that this statement explains the study in which I am being asked to participate. I understand that my signature at the end of this form means I have read the statement thoroughly and carefully before agreeing to participate. Before I sign this statement of informed consent/assent, I am invited to ask any questions pertinent to this study by contacting the researcher at valerie.johnson@richmont.edu.
INFORMATION ABOUT THE STUDY:
PURPOSE: The purpose of this study is to understand if the magnitude of adverse childhood experiences, dissociative symptoms, and alexithymia can predict the health-related quality of life among individuals diagnosed with autoimmune disease.
VOLUNTARY: My participation in this research is completely voluntary. If I decide not to participate, there will be no penalty. If I do participate, I am free to exit the survey at any time without penalty.
BENEFITS: There is no direct or guaranteed benefit to me for participating in the research. However, my participation may help the researchers establish a link between early relational trauma, dissociation, and alexithymia and the development of autoimmune diseases. Study results may be used to enhance current research findings regarding a) pathology of autoimmunity b) potential treatment of autoimmune diseases, and c) the manifestation of adverse childhood experiences on autoimmunity.
EVALUATION: I will take part in this study by participating in an online survey. This survey will include several assessment instruments related to a) adverse-childhood experiences, b) dissociation, c) alexithymia, and d) my diagnostic history and symptoms of my autoimmune disease. The latter of these assessments will be given at the start of the survey to ensure that all participants meet the criteria for a positive autoimmune disease diagnosis. The former three will follow. The completion of each measure is expected to take approximately 5-10 minutes. I may discuss the results with the researcher at any time. The survey is expected to take between 30 to 45 minutes.
RISKS: I understand that recounting traumatic events can reactivate trauma-related symptoms, leading to emotional and physical distress. I understand that some of the questions may stir up unpleasant feelings and memories that could lead to an exacerbation of my autoimmune disorder. I understand that making a potential connection between my childhood and my autoimmune disease may cause feelings of anger, resentment, and blame towards individuals who may be associated with traumatic events from childhood. If unpleasant feelings are evoked, and of concern to me, I understand that I have the responsibility to seek out my own psychological treatment for my safety and wellbeing. If any part of this survey creates an immediate concern for my safety or wellbeing, I will contact my mental health professional or go to my nearest emergency room to seek care. I understand the researcher has provided the following unvetted resources for me to use to assist in any needed support.
Mental health-related resources:
- National Suicide Prevention Lifeline. Call 1800-273-TALK (8255) to speak with a counselor. Available 24/7.
- Crisis Text Line. Text 741741 with the word “home” to text with a trained specialist. Available 24/7.
- Psychology Today. Type in your zip code and then click “chronic illness” under issues to find therapists that specialize in working with chronic illnesses. www.psychologytoday.com.
- Open Path Psychotherapy Collective is a nonprofit nationwide network of mental health professionals dedicated to providing in-office and online mental health care—at a steeply reduced rate—to clients in need. https://openpathcollective.org
Autoimmune-related resources:
- Facebook Groups: “lupus & Autoimmune disease Support & Awareness for Sharing,” “Autoimmune Strong,” & “Autoimmune Disease Support Group”
- You can also find many different support groups on Facebook specific to your autoimmune diagnosis
- Fight Like a Warrior is a non-profit that raises awareness and advocates for individuals with chronic illnesses. Go to https://www.fightlikeawarrior.org/
- They are also very active on Instagram at @fightlikeawarrior
CONFIDENTIALITY: My name will not appear in any publication or be released to anyone without my written consent. Giving my name is only for verification purposes to ensure valid data. Only the research investigators (with training in confidentiality practices) will have access to my information. All data in the published study will be anonymous.
OTHER INFORMATION: I am free to inquire about any aspect of my participation that I do not understand. Should pertinent questions or concerns regarding this study arise at another time, I understand that I may contact Valerie Johnson at Richmont Graduate University at valerie.johnson@richmont.edu.
I understand that by continuing with the survey I voluntarily consent to take part in this research project. I am free to close out of the survey at any time and withdrawal my participation should I wish to do so.