California State University, Dominguez Hills

Consent to Act as a Research Subject

Determinants of quality of life in individuals with Multiple Sclerosis

You are being asked to participate in a research study.  Before you give your consent to volunteer, it is important that you read the following information and ask as many questions as necessary to be sure that you understand what you will be asked to do.

Investigators: Rachel Fein, B.A., Psychology (The University of Arizona), Catherine Chamberlin, B.A., English and Comparative Literature (Pennsylvania State University), Rose Golden, B.A., Political Science (University of California, Los Angeles), and Trevor Glenn, B.S., Kinesiology (Biola University) are graduate student researchers. Yan-hua Huang, PhD, OTR/L is an Associate Professor and is the principal investigator of this research project. All investigators are affiliated with the Masters of Science in Occupational Therapy program at California State University, Dominguez Hills. To contact Dr. Huang directly, please call (310) 243-3626.

Purpose of the Study and Participant Inclusion Criteria:  This study is designed to identify what factors impact the quality of life of a person living with Multiple Sclerosis (MS). This study will specifically focus on the impact of one’s sense of autonomy, environmental factors, social relationships, coping skills, and fatigue on quality of life.  Researchers intend to recruit 90 participants to complete the survey associated with the study.  Study participants should be at least 18 years of age, have been diagnosed with MS for at least 1 year, read English proficiently, and have access to the internet.

Description of the Study:  Researchers will be collecting data via an online survey.  We anticipate having 90 participants.  The survey should take no more than 60 minutes.  The survey will discuss the following topics: demographic information (including gender, age, martial status, year of diagnosis, type of MS, ethnicity, employment status, past OT services), quality of life, autonomy, environmental factors, social relationships, coping factors, and fatigue.  

Risks or Discomforts: There are no known risks.  Because of the personal nature of the questions that will be included in the survey, you may reflect on unpleasant memories or experiences. If you begin to feel uncomfortable, you may discontinue the survey at any time, either temporarily or permanently, and it will not affect your relationship with the researchers.

Benefits of the Study: We are interested in knowing what you hold to be most important in your life, and what you would like to share about your experience with MS. This reflective process may be psychologically beneficial to you, and may provide you with insight into your own strengths and skills. There is no guarantee, however, that you will receive any benefits from participating in this study. This study may also benefit society because it may provide valuable information about MS that can be used to improve therapeutic interventions.

Confidentiality: Only the research team will have access to any and all information pertaining to this research. Google Forms will be used for the electronic survey and IP addresses will be blocked. All survey information will maintained in a digital form and will be password protected. All research material will only be stored for up to one year after the research has concluded, then destroyed. Confidentiality and privacy will be maintained to the extent allowed by law. Please be advised that the investigators are mandated reporters for certain types of information you may share.   For example, any mention of suicidal thoughts, an intention to seriously harm others or knowledge of child or elder abuse, will require the investigators to report such information to the appropriate authorities.

Incentives to Participate:  None

Voluntary Nature of Participation:  Participation in this study is voluntary.  By signing this consent form, you will not be giving up any of your legal rights.  Your choice of whether or not to participate will not influence your future relations with California State University, Dominguez Hills.  If you decide to participate, you are free to withdraw your consent and to stop your participation at any time without penalty or loss of benefits to which you are entitled.

Questions about the Study: If you have any questions about this study or your rights as a participant, you may call the investigator, Dr. Yan-hua Huang, at 310-243-3626, or the Institutional Review Board for the Protection of Human Subjects at CSUDH, 310-243-3756.