Informed Consent

Investigator(s): Katherine (Kitty) Martin

Study Title: A Quantitative Survey of Adults Who Grew Up with Siblings with a Chronic Physical or Mental Health Condition

I am a student at The Chicago School. This study is being conducted as a part of my dissertation requirement for the Doctor of Psychology degree (PsyD).

I am asking you to participate in a research study about the lived experience of growing up with a sibling with a chronic physical or mental health diagnosis. You will be asked to complete a questionnaire online. This will take approximately 15-20 minutes. Risks associated with your participation may include loss of confidentiality, emotional distress or upset, and the reading of questions that may be sensitive or invasive. Although you may not benefit directly from the study, it will help us understand how providers can best serve children growing up in similar situations.

Please take your time to read the entire document and feel free to ask any questions before agreeing to participate.

Purpose: The purpose of this study is to gain information on the experience of growing up with a sibling who had a chronic physical or mental health condition. Specifically, we are looking to identify factors that have played a role in adjusting to this experience. These factors will be used to make recommendations to providers working with this group.

Procedures: You will complete one questionnaire online via SurveyMonkey. The first part will be about your childhood and will include demographic questions, as well as questions about your sibling’s diagnosis, and your relationship with your sibling. The second part will ask questions about your thoughts and feelings. For example, you may be asked if you feel lonely, your level of school/work satisfaction, and your self-esteem. This study will take 15-20 minutes to complete.

Compensation: You will be offered the opportunity to enter a raffle for one of five $10 Amazon gift cards for completing the survey. At the end of the survey, a link will be presented to redirect you to a separate website where you will enter your email address to be entered into the raffle. Using a separate website will protect your confidentiality so that responses are not associated with your email address. If you win, you will receive the compensation through email.

Risks to Participants: The risks to this study are loss of confidentiality, emotional distress or upset, and exposure to materials that may be regarded as sensitive or invasive. Loss of confidentiality will be minimized by directly identifiable data not being published. Emotional distress or upset will be minimized by you being able to take breaks throughout study participation. Loss of confidentiality will be minimized by not publishing identifiable information. If you are experiencing distress, here are some mental health resources that may be helpful for you:
Call or text 988 or chat 988lifeline.org
Findtreatment.gov

Benefits to Participants: You will not benefit directly from this study. However, it is hoped that the information learned from this study may benefit our understanding of how to best serve children growing up in similar situations.

Alternatives to Participation: Participation in this study is voluntary. You may withdraw from study participation at any time without any penalty.
Confidentiality: During this study, information will be collected about you for the purpose of this research. This includes your email address, demographic information (age, country you grew up in, gender, race, number of siblings with and without chronic illness, sibling age, parental marital and custody status, parental level of education, childhood household income), questions about your sibling's illness (nature and severity of sibling's illness, understanding of the illness, impact of illness on you), your relationship with your sibling and parents, as well as some other questions such as whether you personally experience a chronic illness, your childhood support experience and perception, and your attitude toward school. Email addresses will only be collected if you are interested in entering the raffle. Data will be stored on a password protected document. IP addresses will not be collected. Research materials will be kept for a minimum of five years after publication per American Psychological Association (APA) guidelines. All data will be deleted from the SurveyMonkey immediately after it is transferred out.

It is possible that your data may be used for future research or distributed to another researcher without your consent. However, information that could identify you will be removed.

Your research records may be reviewed by federal agencies whose responsibility is to protect human subjects participating in research, including the Office of Human Research Protections (OHRP) and by representatives from The Chicago School Institutional Review Board, a committee that oversees research.


Questions/Concerns: If you have questions related to the procedures described in this document please contact:

Kitty Martin, MA LCPC
Email: kmartin6@ego.thechicagoschool.edu
Principal Investigator

Or

Elana Maurin, PhD
Email: emaurin@thechicagoschool.edu
Research Supervisor


If you have questions concerning your rights in this research study you may contact the Institutional Review Board (IRB), which is concerned with the protection of subjects in research projects. You may reach the IRB office Monday-Friday by calling 312.467.2335 or writing: Institutional Review Board, The Chicago School, 325 N. Wells, Chicago, Illinois, 60654.

Question Title

* 1. I have read the above information and have received satisfactory answers to my questions. I understand the research project and the procedures involved have been explained to me. I agree to participate in this study. My participation is voluntary, and I do not have to proceed if I do not want to be part of this research project. I may take a screenshot or print out a copy of this consent form for my records. Clicking below indicates that I have read the description of the study and I agree to participate in the study.

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* 2. What is your age?

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* 3. Did you grow up in the same household with at least one sibling with chronic illness?

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* 4. Please check the box below to indicate you are a real person.

 
 14% of survey complete.

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