Consent
Title of the Project: A qualitative phenomenological study: An international study on the friendship experiences of diagnosed autistic women and their friendships with their perceived (or diagnosed) autistic and non-autistic same sex adult friends.
Principal Investigator: Jenifer Turner, MA, Doctoral Candidate, Psychology Department, Liberty University
Key Information about the Research Study
You are invited to participate in a research study. To participate, participants
- At least 18 years old
- Formally diagnosed with autism of level 1 or 2 severity.
- Be a biological female who identifies/presents as female.
- Have an adult female friend whom you perceive (or is diagnosed) as autistic
- Have an adult female friend whom you perceive as non-autistic
- Fluent in English
- Must not be non-verbal, severely limited in voicing their thoughts and opinions, or diagnosed with alexithymia.
Things you should know:
- The purpose of this qualitative phenomenological study is to investigate adult autistic women's lived experiences comparing their friendships between their adult same-sex (perceived or diagnosed) autistic and non-autistic friends. If you choose to participate, you will be asked to complete a brief online demographic survey (5-10 minutes), participate in an audio/video-recorded online interview (1 hour), and review the transcript of your interview for accuracy.
- Risks or discomforts from this research include sadness from recalling events, friendship issues, and recognizing painful interpersonal relational patterns.
- Participants should not expect to receive a direct benefit from taking part in this study.
- Taking part in this research project is voluntary. You do not have to participate, and you can stop at any time.
Please read this entire form and ask questions before deciding whether to participate in this research.
What is the study about, and why is it being done?
The purpose of this research study is to gain a deeper understanding of the experiences of diagnosed autistic women’s friendships with their perceived (or diagnosed) autistic and perceived non-autistic, same sex adult friends.
What will happen if you take part in this study?
If you agree to be in this study, I will ask you to do the following:
- Complete a brief online demographic survey (5-10 minutes)
- You will take part in an audio/video-recorded interview through an online video meeting platform such as Zoom, Microsoft Teams, Google meet, etc. This will be about 60 minutes long.
- Review the transcript of the interview after the interview for accuracy.
How could you or others benefit from this study?
Participants should not expect to receive a direct benefit from taking part in this study. However, it may increase your understanding of how you interact and feel with different neurotype friendships.
Benefits to society include increased understanding of the unique challenges and difficulties autistic women face in their friendships. This study will also be used to create a book and a manual for the general public, organizations, and businesses, as well as training instructions (through manuals and/or slide shows) to assist therapists in understanding and learning more about the nuances and challenges of working with autistic women.
What risks might you experience from being in this study?
The expected risks from participating in this study are minimal, which means they are equal to the risks you would encounter in everyday life. Potential risks include feelings of sadness, grief, and confusion about their health and/or functioning in their friendships. The researcher will assess for signs of emotional distress and ask the interviewee whether they would like to stop the interview, take some time to breathe and relax, or continue. The researcher will share the 988 crisis hotline with all of the interviewees.
This study will involve the use of Artificial Intelligence (AI) tools (Quirkos and Otter Ai) to assist with data analysis and data interpretation. While efforts will be made to ensure data accuracy and confidentiality, AI tools may carry minimal risks related to the misinterpretation of results and participant privacy. Any AI-assisted processes will follow strict ethical guidelines, and your data will not be used to train or refine AI systems.
I am a mandatory reporter. During this study, if I receive information about child abuse, child neglect, elder abuse, or intent to harm self or others, I will be required to report it to the appropriate authorities.
How will personal information be protected?
The records of this study will be kept private. Published reports will not include any information that will make it possible to identify a subject. Research records will be stored securely, and only the researcher and the researcher’s faculty supervisor will have access to the records.
- Participant responses will be kept confidential by replacing names with pseudonyms.
- Interviews will be conducted in a location where others will not easily overhear the conversation.
- Data will be stored on a password-locked computer. The researcher and her faculty supervisor will have access to the data. Data may be retained indefinitely.
- The data from this study will be analyzed using Quirkos which will assist in systematically coding significant statements, clustering meaning units, and identifying emerging themes. Data will be stored on a password-locked computer. Only the researcher and her doctoral chair will have access to the data. After 3 years, the data will be deleted.
- Recordings will be stored on a password-locked computer and BackBlaze (cloud storage). The researcher and the researcher’s faculty supervisor will have access to the recordings. Once participants have reviewed and confirmed the accuracy of the transcripts, the recordings will be deleted.
- The data from this study will be transcribed using AI. The data will be transcribed by AI and will be downloaded to the researcher’s computer. The interview data/transcription will be deleted from the AI’s meeting history. Data will be stored on a password-locked computer. The researcher and her faculty supervisor will have access to the data. Data will be retained indefinitely but the recordings will be deleted after the three-year retention period.
How will you be compensated for being part of the study?
Participants will be compensated for participating in this study. After the participants confirm their transcript through emailing the researcher, the their name will be entered into a drawing for a chance to win a $250 Amazon e-gift card.
Is study participation voluntary?
Participation in this study is voluntary. Your decision whether to participate will not affect your current or future relations with Liberty University. If you decide to participate, you are free not to answer any question or withdraw at any time without affecting those relationships.
What should you do if you decide to withdraw from the study?
If you choose to withdraw from the study, please contact the researcher at the email address/phone number included in the next paragraph. Should you withdraw, the data collected from you will be destroyed immediately and will not be included in this study. Withdrawal from the study also removes your entry from the $250 Amazon electronic gift card drawing.
Whom do you contact if you have questions or concerns about the study?
The researcher conducting this study is Jenifer Turner, MA. You may ask any questions you have now. If you have questions later, you are encouraged to contact her at jmsuri@liberty.edu. You may also contact the researcher’s faculty sponsor, Dr. Sarah Jo Spiridigliozzi, at sjspiridigliozzi@liberty.edu
Whom do you contact if you have questions about your rights as a research participant?
If you have any questions or concerns regarding this study and want to talk to someone other than the researcher, you are encouraged to contact the IRB. Our physical address is Institutional Review Board, 1971 University Blvd., Green Hall Ste. 2845, Lynchburg, VA, 24515; our phone number is 434-592-5530, and our email address is irb@liberty.edu.
Disclaimer: The Institutional Review Board (IRB) ensures that human subjects research will be conducted ethically as defined and required by federal regulations. The topics covered and viewpoints expressed or alluded to by student and faculty researchers are those of the researchers and do not necessarily reflect the official policies or positions of Liberty University.
Your Consent
By selecting "Gives Consent" and electronically signing below, Make sure you understand what the study is about before you sign. You will be given a copy of this document for your records. The researcher will keep a copy of the study records. If you have any questions about the study after you sign this document, you can contact the study team using the information provided above.