The Role of Social Support in LHON

 

Researcher's Affiliation:
This study is being conducted by Jonathan W. Dator, a doctoral candidate in the Counseling Psychology Ph.D. program in the Department of Professional Psychology and Family Therapy, in the Seton Hall University College of Education and Human Services.

Purpose and Duration of Research:
This project aims to add knowledge to a field that can ultimately tailor current resources and create new ones for the unique needs of individuals with Leber’s Hereditary Optic Neuropathy.
To make your participation as brief as possible, this survey should take about 30 minutes to complete.

Instruments:
Participants will complete 3 instruments during this survey. (1)Demographic Questionnaire, (2)The Multidimensional Scale of Perceived Social Support, and (3) The Impact of Vision Impairment Questionnaire.

Procedures and Voluntary Participation:
If you are 18 years or older, have lost vision due to Leber’s Hereditary Optic Neuropathy (LHON) and have been diagnosed with LHON, you are eligible to take part in this survey. Participation in this study is completely voluntary. You may withdraw from the study at any time without consequence.

Anonymity Preservation and Confidentiality Maintenance:
Your anonymity will be maintained throughout all aspects of the study. Any publication of the data from this study will in no way identify you and results will be reported in combined form only. All materials will be collected in the strictest confidence. Completed responses to questionnaires will be kept in a secure location and will be accessible only to myself and my academic advisor, Dr. Laura Palmer. The data will be stored electronically on a USB memory key and kept in a locked, secure physical setting.

Anticipated Risks and Discomfort:
There are no significant risks or discomforts likely to be associated with this study. However, participants who do experience significant distress are urged to use the American Psychological Association’s psychologist locator to request a referral to a psychologist in your area through the following website: http://locator.apa.org/.

Benefits to Research:
Participation provides useful information in further understanding some of the challenges facing individuals affected by vision loss due to Leber’s Hereditary Optic Neuropathy. Personally, this study may also be useful to increase your self-awareness.

Alternative Procedures:
This study does not involve any clinical treatment; therefore, there are no relevant alternative procedures.

Accommodations:
If this online survey is not compatible with your Assistive Technology, or you would prefer to be administered the questions in an alternative format, please email Jonathan W. Dator and accommodations will be provided.

Contact Information:
If participants have questions regarding the research process or would like to have a copy of the results, please contact Jonathan W. Dator. If participants have questions regarding their rights as research participants, the Director of Seton Hall University Institutional Review Board (IRB), Dr. Mary Ruzicka, may be reached at 973-313-6314.

Jonathan W. Dator, M.Ed., Principal Researcher
Jonathan.Dator@student.shu.edu
203-512-8428

Dr. Laura K. Palmer, Ph.D., Faculty Advisor
Laura.Palmer@shu.edu
973-761-9450