LONG TERM SURVIVOR PROJECT

Informed Consent:

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Description:

The purpose of this study is to gather information, stories and data about the lives of long term survivors (LTS) of HIV/AIDS. The thesis proposal is that LTS’s have been marginalized in the mainstream, but have rich and vibrant lives which are a source of inspiration and worthy of recognition. The thesis will attempt to find a place for LTS’s at the center of research in and about queer sexuality and theory. The study involves a written questionnaire which is accessible online below. This will take 30-45 minutes. Follow up interviews in person to be scheduled with selected participants. This will take anywhere from 30 minutes to 60 minutes. There is an opt-in photography component which will be part of a secondary project (a book and exhibition celebrating the lives of Poz folk in their own images and words). Interviewees scheduled for this research will be allotted an extra 30 minutes with a professional photographer. There is no requirement to participate in this portion of the research, and you will have the opportunity to request this option at the end of the survey.

Study Design:

The questionnaire data will be used to evaluate trends in the way Poz long term survivors think about themselves, to identify linkages between the way Poz people see themselves and other demographic information (race, gender, sexuality, etc). Interviews will be used in part to complement the writing of the researcher’s thesis, and to illustrate trends in the data provided by the survey. It is the position of the researcher that it is important to allow the voices of LTS’s to be heard in the work he is doing. If you consent to a follow up interview and your words are chosen, you will have the opportunity to edit, retract, or cancel your participation at any point up to publication. You also have the right to opt-out at any point for any reason with no penalty and the researcher’s thanks and gratitude. If you have ethical concerns about this project or the researcher, please contact the Manager, Office of Research Ethics, York University, 309 York Lanes, 416-736-5914.

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