Epilepsy, Separation-Individuation, and Self-Management: Their Relationships


Research Study Title: Epilepsy, Separation-Individuation, and Self-Management: Their Relationships

Principal Investigator: Channing Harris, M.A. (epilepsydissertation@gmail.com; 805-364-2861)
Faculty Advisor: Joan B. Read, Ph.D. (jread@fielding.edu)

What are some general things you should know about research studies? You are being asked to participate in a research study entitled, Epilepsy, Separation-Individuation, and Self-Management: Their Relationships, which is being conducted by Channing Harris, a doctoral candidate in the Clinical Psychology program at Fielding Graduate University, Santa Barbara, CA. Your participation is completely voluntary. You may refuse to join, or you may withdraw your consent to be in the study, for any reason. Details about this study are discussed below. It is important that you understand this information so that you can make an informed choice about participating in this research study.

What is the purpose of this study? The purpose of the study is to gain a better understanding of young adults with epilepsy, how living with epilepsy may influence psychological health and development, (including the relationships between young adults with epilepsy and their parents, young adults’ perceptions regarding parental overprotectiveness, and the extent to which these aspects influence psychological well-being and the management of epilepsy), and the ways in which self-management may be affected. It is our hope that this information will help to eventually inform evidence-based treatment for people with epilepsy.

How many people will take part in this study? If you decide to be in this study, you will be one of approximately 300 people in this research study.

What will happen if you take part in the study? Your part in this study will last approximately 20-25 minutes. During this study, you will complete a series of online questionnaires. These questionnaires will ask you to provide ratings on several different scales that assess your experiences with epilepsy, your parents, your peers, psychological symptoms, and epilepsy-related self-management. You will also be asked to provide demographic information (i.e., age, race, etc.) and epilepsy information (i.e., type of epilepsy, epilepsy medications you take, etc.).

What are the possible benefits from being in this study? Though this research will benefit society by providing knowledge, it will more directly benefit the field of clinical psychology (and other mental health specialty programs) by improving the understanding of people with epilepsy, and in turn, the quality of mental health services provided people with epilepsy. You may not benefit personally from being in this research study.

What are the possible risks or discomforts involved from being in this study? We anticipate few risks in this study. As a result of your participation in this research, you may develop a greater personal awareness of your life experiences and behaviors, which could make you feel uncomfortable. However, the risks to you are considered minimal. There is a possible chance you may experience some emotional discomfort during your participation. If you experience discomfort during your participation, or for any other reason, you may quit answering questions at any time.
How will your privacy be protected? All of the data you provide will be stored anonymously. This means that there will be no way for anybody to ever link your data or the results of the study to your identity. This online survey program offers encryption technology that prevents anyone (other than the principal investigators) from accessing the data that your provide. Your responses will be transferred from the survey program to a secure location for storage and will only be accessed by the principal investigators. These data will be privately maintained and destroyed by Channing Harris 5 years after the study is completed. The results of this research project will be presented at professional meetings and will be submitted for publication in journals. However, your name or other identifying information will not be given in presentations and publications. Your identity and the information you provide in this study will stay confidential (private).

What if you want to stop before your part in the study is complete? You can withdraw from this study at any time and skip any question for any reason.

Will you receive anything for being in this study? Will it cost anything? You will have the option to register for one of three cash prizes (two (2) $25 prizes and one (1) $50 prize) after you have completed all the questionnaires in this study. Your identifying information will be kept separately from your responses, such that no one will know how you answered the questionnaires. Winners will be drawn at random, contacted, and sent the prize money. At that time, all identifying information from those who registered for the lottery will be destroyed. There are no costs associated with being in the study.

What if you have questions about this study? You have the right to ask, and have answered, any questions you may have about this research. Contact the principal investigator (Channing Harris at 805-364-2861 or epilepsydissertation@gmail.com) with any questions, complaints, or concerns you may have.

What if you have questions about your rights as a research participant? All research on human volunteers is reviewed by a committee that works to protect your rights and welfare. The Institutional Review Board of Fielding Graduate University retains the right to access the signed informed consent forms and study documents. If you have questions or concerns, or if you would like to obtain information or offer input, please contact the Institutional Review Board at irb@fielding.edu or by telephone at 805-898-4033.

If you feel like you need help for mental health concerns, please utilize one of the following resources: If you need to speak with someone now, call The National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or seek more information at http://www.samhsa.gov/prevention/suicide.aspx

If you want to seek help from a provider in your area, you may find a therapist at http://psychcentral.com/find-help/

If you have been referred from the Neurology Clinic or a physician’s office, please contact your physician or a member of your health care team.

If you have read and understand the above statements and you agree that you are between the ages of 18 and 40 and have a diagnosis of epilepsy or a seizure disorder, please check "Agree" below and click the "Next" button to indicate your consent to participate in this study.
1. I have read and agree to the above informed consent.