Informed Consent for Studies with Adults

TITLE OF RESEARCH STUDY: “Autism Perceptions – A Comparative Phenomenological Study in Texas”

IRB PROTOCOL NUMBER: IRB-22-722

RESEARCH TEAM:  Dr. Yolanda Mitchell, University of North Texas (UNT), Department of Educational Psychology, 940-369-8377, yolanda.mitchell@unt.edu; Kimberly Mosley, University of North Texas (UNT), Department of Educational Psychology, kimberly.mosley@unt.edu

You are being asked to participate in a research study. Taking part in this study is voluntary. The investigators will explain the study to you and will any answer any questions you might have. It is your choice whether or not you take part in this study. If you agree to participate and then choose to withdraw from the study, that is your right, and your decision will not be held against you. You are being asked to take part in a research study about Texan individuals’ descriptions and perceptions of autism spectrum disorder (autism). Your participation in this research study involves participating in a one-on-one interview either in a face-to-face format or via Zoom. More details will be provided in the next section.

You might want to participate in this study if you identify as a family member of an individual with autism spectrum disorder, and/or you are an educator, clinician, therapist, clergy member, or community member who interacts with individuals with autism. However, you might not want to participate in this study if you feel less comfortable discussing your perceptions and experiences regarding autism or if you lack the time to participate in an interview. You may choose to participate in this research study if you are at least 18 years of age or older, fluent in the English language, and an individual who identifies as identify as a family member of an individual with autism spectrum disorder and/or you are an educator, clinician, therapist, clergy member, or community member who interacts with individuals with autism and if you reside in Texas.

The reasonably foreseeable risks or discomforts to you if you choose to take part are stress associated with discussing personal perceptions and experiences, or potential loss of confidentiality, which may be compared to the possible benefit of gaining increased understanding of autism dynamics, experiences, and perceptions. You will not receive compensation for participation.

DETAILED INFORMATION ABOUT THIS RESEARCH STUDY: The following is more detailed information about this study, in addition to the information listed above.

PURPOSE OF THE STUDY: This study will explore aspects of Lev Vygotsky’s socio-cultural theory and influences on neurodiverse dynamics associated with autism, resilience, and coping, particularly amongst underrepresented communities. I offer usage of “neurodiverse’, instead of disability or disorder to provide a strength-based perspective to the examination of autism spectrum disorder. Using a social constructivism framework with critical elements this study seeks to (a) comparatively explore how participants residing in Texas describe autism-related dynamics in familial, educational, clinical/therapeutic, community and religious settings (b) identify perceptions and common themes (e.g., cognitive development related outcomes, family dynamics, self-identity, and coping mechanisms) regarding multi-dimensional autism dynamics, and (c) explore implications for individuals and families with autism, including impacts of perceptions on outcomes and future trajectories.

The proposed study seeks to answer the following research questions:
●          How do individuals residing in Texas describe autism-related family dynamics? ●          How are autism-related dynamics perceived in educational, clinical/therapeutic,                  community and religious societal dimensions in Texas?
The intent of this investigation is to shed light on the descriptions and perceptions of autism in order to facilitate a deeper understanding of underrepresented multi-dimensional dynamics and application of these understandings to the development of supports and interventions in future research.

TIME COMMITMENT: Participation in this study is expected to last for about 60 minutes. Completion of the entire interview is expected to last about 45 minutes, with 15 minutes allotted for member checking.

STUDY PROCEDURES: You will be asked to take part in a one-on-one interview and/or focus group conducted in English. Interviews will be scheduled between the hours of 8:00 am to 5:00 pm Central Standard Time, Monday – Friday during the Spring 2023 semester through the Fall 2024 semester. Completion of the entire interview is expected to last about 45 minutes, with 15 minutes allotted for member checking. The semi-structured interview will occur either in a face-to-face format or over Zoom and will include questions prompting you to reflect on questions related to neurodiversity-related perceptions and experiences.

With your permission, the interview will be audio recorded and transcribed on a recorder and/or the Zoom platform. All information and responses obtained in the interview will be kept safe on a secure computer server and only study team members will have access to them. To keep your information confidential, the researchers will assign a numeric identity code (Participant ID) to your information and remove names and other items that can be traced back to you. Sensitive subject matter regarding family dynamics, employment interactions, and other events will be addressed during this interview. You may ask to skip any question that makes you feel uncomfortable.

Your participation is completely voluntary, and you may stop at any time without penalty.

 AUDIO/VIDEO/PHOTOGRAPHY: You may participate in the study if you do not agree to be audio recorded. All audio recordings will be immediately destroyed after transcription.

POSSIBLE BENEFITS: You will receive information that will contribute to the greater understanding of unique experiences of individuals who interact with individuals with neurodiverse conditions, such as autism. The intent of this investigation is to shed light on the descriptions and perceptions of autism in order to facilitate a deeper understanding of autism-related dynamics and application of these understandings to the development of supports and interventions. Furthermore, the data collected from this study will contribute to the field of educational psychology by advancing general knowledge on autism-related dynamics, particularly within underrepresented communities.

POSSIBLE RISKS/DISCOMFORTS:  The reasonably foreseeable risks or discomforts to individuals who choose to take part are discomfort or stress associated with answering questions or discussing personal family dynamic-related and autism-related experiences, and possible loss of confidentiality, which may be compared to the possible benefit of participants gaining increased understanding of their family dynamic-related experiences. However, if you do experience any discomfort, please inform the primary researcher (yolanda.mitchell1. Using the internet, find a university you are interested in applying to and explore the website.  2. Locate the programs of study options and look for a major that interests you. 3. Find a degree plan to learn more about what classes are required to obtain a degree in your chosen career field.  4. Submit a copy of the degree plan for your assignment and be prepared to share the answers to the following questions with your peers in class:              - How many credit hours are need to earn a bachelor's degree?              - What courses sound most intriguing to you?              - What courses are you surprised to see on the degree plan? 5. As a bonus activity, take a look at the cost of attendance. How much does it cost to attend one year of courses at your university of choice? How does this cost fit into your budget?@unt.edu) or contact the UNT IRB (untirb@unt.edu) and appropriate referrals may also be provided by the primary researcher. Participation in interviews on Zoom involve risks to confidentiality similar to a person’s everyday use of the internet and that there is always a risk of breach of confidentiality. You might experience stress and/or discomfort related to discussing personal, family dynamics. 

If you experience excessive discomfort when completing the research activity, you may choose to stop participating at any time without penalty. The researchers will try to prevent any problem that could happen, but the study may involve risks to the participant, which are currently unforeseeable. UNT does not provide medical services, or financial assistance for emotional distress or injuries that might happen from participating in this research. If you need to discuss your discomfort further, please contact a mental health provider, or you may contact the researcher who will refer you to appropriate services. If your need is urgent, helpful resources include National Alliance for The Mentally Ill at 1-800-950-NAMI, National Suicide Prevention Hotline Lifeline, 1-800-273-TALK (8255), and SAMHSA Treatment Referral Helpline, 1-877-SAMHSA7 (1-877- 726-4727).

Participating in research may involve a loss of privacy and the potential for a breach in confidentiality. Study data will be physically and electronically secured by the research team.  As with any use of electronic means to store data, there is a risk of breach of data security. Participating in this research study may involve increased risk of exposure to COVID-19 due to in-person interactions with the research team. The study team will follow local regulations and institutional policies, including using personal protective equipment (masks) and social distancing guidelines while those regulations and policies are in effect. If you have any questions or concerns, please discuss them with your research team.

COMPENSATION: No compensation will be offered for participation in the study.

CONFIDENTIALITY: Efforts will be made by the research team to keep your personal information private, including research study responses, and disclosure will be limited to people who have a need to review this information. All electronic data collected from this study will be stored in a secure location on the UNT campus and/or a secure UNT server for at least three (3) years past the end of this research on password protected computer in Dr. Yolanda Mitchell’s campus office. Participation in this online survey involves the potential for the loss of confidentiality similar to a person’s everyday use of the internet. The information will be made available to other researchers following the completion of this research study and will not contain information that could identify you. There are some reasons why people other than the researchers may need to see information you provide as part of the study. This includes organizations responsible for making sure that the research is done safely and properly, including the University of North Texas, as the study sponsor. You may be asked to provide the names of other potential participants, but you have the right to decline this information.

The researcher will maintain confidentiality if you decide to suggest other persons for inclusion in the research. The results of this study may be published and/or presented without naming you as a participant. The data collected about you for this study will be used for future research studies that are not described in this consent form. If that occurs, an IRB would first evaluate the use of any information that is identifiable to you, and confidentiality protection would be maintained.  While absolute confidentiality cannot be guaranteed, the research team will make every effort to protect the confidentiality of your records, as described here and to the extent permitted by law. In addition to the research team, the following entities may have access to your records, but only on a need-to-know basis: the U.S. Department of Health and Human Services, the FDA (federal regulating agencies), the reviewing IRB, and sponsors of the study. For the interviews, this research uses a third-party software called Zoom and is subject to the privacy policies of this software noted here: https://zoom.us/privacy/. Zoom will also be utilized to record and transcribe interviews, which requires us to save the recording to the Cloud. Only the researchers will have access to these password encrypted recordings. The recordings will be deleted immediately after the transcript is completed, which will be no longer than one week after the interview. For more information on the privacy of the Zoom cloud visit this link: https://explore.zoom.us/en/trust/security/.

CONTACT INFORMATION FOR QUESTIONS ABOUT THE STUDY:  If you have any questions about the study you may contact Dr. Yolanda Mitchell, University of North Texas (UNT), Department of Educational Psychology, 940-369-8377, yolanda.mitchell@unt.edu or Kimberly Mosley, University of North Texas (UNT), Department of Educational Psychology, kimberly.mosley@unt.edu.

Any questions you have regarding your rights as a research subject, or complaints about the research may be directed to the Office of Research Integrity and Compliance at 940-565-4643, or by email at untirb@unt.edu.

CONSENT: Your audio and informed consent indicates that you have read or have had read to you all of the above.  You confirm that you have been told the possible benefits, risks, and/or discomforts of the study. You understand that you do not have to take part in this study and your refusal to participate or your decision to withdraw will involve no penalty or loss of rights or benefits. You understand your rights as a research participant, and you voluntarily consent to participate in this study; you also understand that the study personnel may choose to stop your participation at any time. By consenting, you are not waiving any of your legal rights.