PARENT/LEGAL GUARDIAN PERMISSION FOR A CHILD’S PARTICIPATION
A Qualitative Analysis of ME/CFS in Adolescence
Principal Investigator: Chelsea Torres, M.A. (Graduate Research Assistant)
Institution: DePaul University, Chicago, Illinois, USA
Department: Center for Community Research
Faculty Advisor: Leonard A. Jason, Ph.D.
What is the purpose of this research?
We are asking your child to be in a research study because we are trying to learn more about adolescents who have been diagnosed with ME/CFS and their diagnostic experiences. Specifically, we are interested in learning more about how to better support adolescents in the initial stages of their illness. This study is being conducted by Chelsea Torres, a graduate research assistant at DePaul University, and this research is being supervised by her faculty advisor, Leonard A. Jason, Ph.D. There may be other people on the research team assisting with the study. We hope to include roughly 10 adolescents in this research.
Why is your child being asked to be in the research?
Your child is invited to participate in this study because he or she has been diagnosed with ME/CFS, is between the ages of 10 and 17, and is able to speak and understand English.
What is involved in being in the research study?
If you allow your child to be in this study, being in the research involves completing a brief online survey to determine eligibility and preferred contact method. You and your child will then work with research staff to coordinate a virtual interview using Zoom, a secure web-based platform for video conferencing. This interview will last roughly 60 to 90 minutes, and your child will be asked a series of questions regarding health history, symptom presentation, course of treatment, school and cognitive functioning, social and developmental setbacks, and overall changes in mental health since illness onset. Your child will also be asked a few demographic questions pertaining to their age, gender, race/ethnicity, and date of ME/CFS diagnosis. The interview will be audio recorded and transcribed into written notes later in order to get an accurate record of your child said. Your child may skip any questions that they do not wish to answer, with the exception of completing the online survey items (to ensure that you and your child are eligible for participation).
As the parent/guardian, you will complete the online eligibility survey. At the start of the survey, you will be asked to list a preferred contact method (either email or phone number). When your survey items conclude, you will click ‘submit’ and a member of the research team will contact you and your child with information regarding interview scheduling. If your child is younger than 11 years old, you will be asked to explain the study to your child and assist in understanding any questions. You may also assist older children with any questions they might have about the study.
While your child will be interviewed on their own, your child is also welcome to consult you regarding any questions they may have trouble answering. However, once you provide the clarification your child needs to understand the questions, we will encourage you to allow your child to respond independently. Please do not alter your child’s response, even if you disagree.
Are there any risks involved in participating in this study?
Being in this study does not involve any risks other than what your child would encounter in daily life. Your child may feel uncomfortable or embarrassed about answering certain questions; however, your child does not need to answer any questions that they do not want to answer. Your child’s name will not be collected at any time during the survey, and all contact information will be erased following your interview. There is the possibility that others may find out what your child has said, but we have put protections in place to prevent this from happening. We will create a code to replace all written personal identifiers, such as your child’s name. All records will be stored in a secure, password-protected web drive that only approved members of the research team may access.
Are there any benefits to participating in this study?
Your child will not personally benefit from being in this study. However, we hope that what we learn will help researchers and doctors better understand the experiences of children and adolescents with ME/CFS.
How much time will this take?
After you complete your eligibility survey, we will contact you and your child to schedule an interview time according to your availability. This process should not take more than 5-10 minutes. Any questions you or your child have about the study can be answered at this time. Once an interview time is selected, you will receive a secure Zoom link roughly 5-10 minutes prior to your child’s interview slot. This link will take you directly to the virtual interview. You will not need to download any software for this; however, please ensure that your laptop is equipped with microphone and video capabilities prior to the interview. We are happy to assist with setting up these functions if needed.
In total, the interview will take about 60 to 90 minutes to complete. While we will ask a series of questions, we are also welcoming participants to discuss any aspect of their illness experience that they feel is important to disclose. Any questions that your child does not feel comfortable answering may be skipped.
Is there any kind of payment, reimbursement or credit for being in this study?
Your child will receive a $20 Amazon gift card for participating in the interview.
Can you decide not to participate or to let your child participate?
Your child’s participation is voluntary, which means your child can choose not to participate. Even if you agree to allow your child to be in the research, your child may decide that he/she does not want to be in this study now or once he/she starts the study, he/she can withdraw at any time. There will be no negative consequences, penalties, or loss of benefits if you decide not to allow your child to participate or if you change your mind later and withdraw your child from the research after you or he/she has begun participating.
Who will see my child’s study information and how will the confidentiality of the information collected for the research be protected?
The research interview will be conducted via Zoom, a secure web-based platform. This platform has added security features to ensure your privacy and protection while communicating with us online. We will only record your audio responses to be transcribed into written text, and these records will be kept and stored securely. Your child’s information will be combined with information from other people taking part in the study. When we write about the study or publish a paper to share the research with other researchers, we will write about the combined information we have gathered. We will not include any information that will directly identify your child. We will make every effort to prevent anyone who is not on the research team from knowing that your child gave us information, or what that information is. However, some people (for example, the DePaul University Institutional Review Board) might review or copy our records to make sure we are following the required rules, laws, and regulations. If they look at our records, they will keep your child’s information confidential. To prevent others from accessing our records or identifying your child should they gain access to our records, we have put some protections in place. We will remove the direct identifiers, such as your child’s name, from your records and audio-transcriptions and replace it with a random code that cannot be linked back to your child. This means we have de-identified your child’s information. It is possible that we might use this de-identified information in future research studies or share the de-identified information with other people, like other researchers. If we do this, we will not contact you or your child to get additional consent. All records will be stored in a secure, password-protected web drive that only members of the research team can access. All audio recordings will be kept until accurate written notes have been made, then they will be destroyed. You should know that there are some circumstances in which we may have to show your child’s information to other people. For example, the law may require us to show your information to a court or to tell authorities if you report information about a child being abused or neglected or if you pose a danger to yourself or someone else.
Who should be contacted for more information about the research?
Before you decide whether or not to allow your child to take part in the study, please ask any questions that might come to mind now. Later, if you or your child have questions, suggestions, concerns, or complaints about the study, or you or your child want to get additional information or provide input about this research, you or your child can contact the researcher, Chelsea Torres, M.A. (Email: ctorre45@depaul.edu), or faculty sponsor Leonard A. Jason, Ph.D. (Phone: 773-325-2018; Email: ljason@depaul.edu).
This research has been reviewed and approved by the DePaul Institutional Review Board (IRB). If you or your child have questions about your child’s rights as a research subject, you or your child may contact Jessica Bloom in the Office of Research Services at (312) 362-6168 or by email at jbloom8@depaul.edu.
You or your child may also contact DePaul’s Office of Research Services if:
- Your (or your child’s) questions, concerns, or complaints are not being answered by the research team.
- You (or your child) cannot reach the research team.
- You (or your child) want to talk to someone besides the research team.
You may print a copy of this information to keep for your records.
Statement of Parent/Legal guardian Permission for a Child’s Participation in Research:
I have read the above information. I have had all my questions and concerns answered. By selecting, “I Agree,” I indicate permission for my child to be in the research.