CONSENT FOR RESEARCH
The Pennsylvania State University
Title of Project: How Do Autistic Teens Experience a Young Adult Novel and Construct Meaning Through Their Reading?
Principal Investigator: Erin Hoopes
Address: Philadelphia, PA
Telephone Number: Weekdays: 8:00 a.m. to 5:00 p.m. (267) 670-5116.
Faculty Advisor: Dr. Elisa Hopkins
Faculty Advisor Telephone Number: 814-865-3489
We are asking you to be in a research study. Whether or not you take part is up to you. You can choose not to take part. You can agree to take part and later change your mind. Your decision will not be held against you, and there will be no penalty or loss of benefits to which you are entitled. This form gives you information about the research. Please ask questions about anything that is unclear to you and take your time to make your choice.
Some of the people who are eligible to take
part in this research study may not be able to give consent because they are
less than 18 years of age (a minor).
Instead, we will ask their parent(s)/guardian(s) to give permission for
their participation in the study, and we may ask them to agree (give assent) to
take part. Throughout the consent form,
when we say “you”, we mean you or your child.
Participant Criteria
You are eligible for this study if you:
- Are between the ages of 13 and 19
- Have received a medical diagnosis of autism or Autism Spectrum Disorder (ASD)
- Live in the United States
DETAILED INFORMATION
1. Why is this research being done?
This research is being done to find out more about unique ways in which autistic teens choose books for recreational reading, respond to reading fiction, and integrate what they have learned through reading into their lives and self-concepts. Approximately 10 people will take part in this research study nationwide.
2. What will happen in this research study?
In this study, you will:
- Read the book The Many Half-Lived Lives of Sam Sylvester by Maya MacGregor, which will be mailed to you.
- Keep a response journal as you read (this is optional and you will receive more details about this after completing the consent form).
- Participate in a recorded Zoom interview with the study's principal investigator where you'll talk about your experience reading The Many Half-Lived Lives of Sam Sylvester and how it relates to your reading experiences more broadly. During the interview, you may skip any questions you do not want to answer.
The Many Half-Lived Lives of Sam Sylvester by Maya MacGregor is a "queer contemporary YA mystery" featuring "a nonbinary autistic teen [who] realizes they must not only solve a 30-year-old mystery but also face the demons lurking in their past in order to live a satisfying life."
- This book has received several awards: 2023 Rainbow Book List Top 10 Titles for Teen Readers, Bank Street Best Book of the Year, and 2023 Amelia Elizabeth Walden Book Award finalist.
- Kirkus Reviews gave this book a starred review and called it ”a top-notch blend of contemporary fiction and mystery with a satisfying conclusion…Blending and transcending genres, the book’s beautiful storytelling and the rich voice of the prose at times evoke poetry...A thrilling debut featuring lovable and well-developed characters.”
- Publisher's Weekly gave this book a starred review and said about it: "Sam’s intimate developing relationships and outwardly bright future provide respite and optimism, even as they battle internal fears for the future. Equal parts delicate and devastating, MacGregor’s thought-provoking prose, evocative settings, and vividly characterized cast combine to provide a hopeful look at survival and closure.”
- School Library Journal gave this book a starred review and wrote: “This vibrantly written debut novel masterfully blends a suspenseful and satisfying paranormal mystery with a sweet and tender love story."
What are my responsibilities if I take part in this research?
You are responsible for reading the featured novel and participating in a Zoom interview.
3. What are the risks and possible discomforts from being in this research study?
- There is a risk of loss of confidentiality if your information or your identity is obtained by someone other than the investigators, but precautions will be taken to prevent this from happening. The confidentiality of your electronic data created by you or by the researchers will be maintained as required by applicable law and to the degree permitted by the technology used. Absolute confidentiality cannot be guaranteed.
- If you choose to participate in this study, you will be reading The Many Half-Lived Lives of Sam Sylvester, which contains intense depictions of bullying and violence, as well as instances of panic attacks, self-harm, suicidal ideation, ableism, misgendering, homophobia, and transphobia.
- You will also be prompted to think about and share ways in which reading this book impacts you personally, through emotions you experience as you read, and/or through ways your thinking about your own life and experiences might change after reading it. Reading this book might cause you to experience strong feelings. You will be
provided with a “Support Resources” document with crisis hotline information.
4. What are the possible benefits from being in this research study?
- Participating in this study might encourage positive self-reflection and help you to learn more about your own reading practices, how you understand being autistic and other identities you might hold, and how you think about and experience the world.
- Finally, your voice, through participation in this study, could help to inform best practices for educators, librarians, and other people who work with and read or recommend young adult literature to autistic teens.
5. What other options are available instead of being in this research study?
You may choose not to be in this research study.
6. How long will I take part in this research study?
Overall, the research study will last a few weeks. On your own time, you will read a novel and then participate in a Zoom interview that will last 1-2 hours.
7. How will you protect my privacy and confidentiality if I decide to take part in this research study?
Efforts will be made to limit the use and sharing of your personal research information to people who have a need to review this information. Reasonable efforts will be made to keep the personal information in your research record private. However, absolute confidentiality cannot be guaranteed, and there may be situations where disclosure is required by law.
In the event of any publication or presentation resulting from the research, no personally identifiable information will be shared. Video recordings
of Zoom interviews will be stored in a password-protected file and will only be
viewed by the study’s principal investigator. Video recordings of Zoom
interviews will be deleted no more than six months after completion of the
study.
We will do our best to keep your participation in this research study confidential to the extent permitted by law. However, the following people/groups may check and copy records about this research.
- The Office for Human Research Protections in the U. S. Department of Health and Human Services
- The Penn State Institutional Review Board (a committee that reviews and approves human research studies) and the Penn State Human Research Protection Program
- The investigator, Penn State study staff, and other Penn State professionals who may be evaluating the study or need this information to do their jobs (such as for treatment, payment (billing), or health care operations)
- Public health and safety authorities (for example, if we learn information that could mean harm to you or others, we may need to report this, as required by law)
We may use your research information in future studies or may share your information with other investigators for future research without your additional informed consent. Before we use or share your information, we will remove any information that shows your identity.
8. What are the costs for taking part in this research study?
There is no cost to you for taking part in this study.
9. Will I be paid to take part in this research study?
You will not receive any payment or compensation for being in this research study.
10. Who is paying for this research study?
There are no grantors, institutions, or companies involved in this research through funding or grants.
11. What are my rights if I take part in this research study?
Taking part in this research study is voluntary.
- You do not have to be in this research.
- If you choose to be in this research, you have the right to stop at any time.
- If you decide not to be in this research or if you decide to stop at a later date, there will be no penalty or loss of benefits to which you are entitled.
During the course of the research you will be provided with any new information that may affect your health, welfare or your decision to continue participating in this research.
12. If I have questions or concerns about this research study, whom should I call?
You have the right to ask any questions you may have about this research. If you have questions, complaints or concerns or believe you may have been harmed from participating in this research, you should contact Erin Hoopes at (267) 670-5116. If you have questions regarding your rights as a research subject or concerns regarding your privacy, you may contact the research protection advocate in the Penn State Human Research Protection Program at 814-865-1775. You may call this number to discuss any problems, concerns or questions; get information or offer input.
CHILD'S PERSONAL ASSENT FOR RESEARCH
The research study has been explained to you. You have had a chance to
ask questions to help you understand what will happen in this research.
You Do Not have to be in the research study. If you agree to
participate and later change your mind, you can tell the researchers, and the
research will be stopped.
PARENTAL CONSENT FOR RESEARCH
Signature
of Parent(s)/Guardian for Child
By signing this consent form, you indicate that
you permit your child to be in this research and authorize your child’s
information to be used and shared as described above.
