Who is invited?
Any HIV-positive person living in the United States or Brazil is invited to contribute knowledge and experience.
How can I participate?
You can fill out questionnaires on paper by contacting the project team and asking to meet (or for them to mail you paper questionnaires) or online, from your computer or smartphone, through a protected and confidential site. If you live in the States, access the questionnaires through the US link (also provided elsewhere in this blog). People living in Brazil should access the questionnaires in Portuguese through the Brazilian link.
What do the questions ask about?
Your attitudes, thoughts and emotions about social relationships, health/illness and life, as well as some concrete questions about your health experiences in HIV.
I don't want people to find out I have HIV. What about my privacy?
We are extremely careful about this. Prejudice and stigma against people with HIV can be a fact of life these days (that's one of the reasons we are doing this study), so your privacy is protected above all else. You will have a choice of two different privacy options (confidential and anonymous participation). Both of them carefully protect your personal information (including your HIV status) and meet all standards of both the United States Department of Health and Human Services, and the Brazilian National Health Council. This is explained in more detail in the consent form that you fill out before starting the questionnaires.
How long does it take?
It takes most people about 45-50 minutes to fill out the questionnaires. It's better to do it all in one sitting, but you can take a break and pick up where you left off without problems. Just use the same computer or smartphone to access the link.
Is it heavy, or emotionally difficult, to do the questionnaires?
No. Quite the contrary. Some of the questions are a little more in-depth than your usual HIV questionnaire, so they can be interesting or thought-provoking. Almost all HIV-positive people who have already done the questionnaires in Brazil and the US have said they enjoyed the experience. We are more interested in how people make positive changes than rehashing old problems. People have told us the questionnaires provide a helpful framework for them to review important things in their lives, and that the opportunity to contribute to the improvement of quality-of-life and wellbeing in HIV/AIDS was rewarding.
Any HIV-positive person living in the United States or Brazil is invited to contribute knowledge and experience.
How can I participate?
You can fill out questionnaires on paper by contacting the project team and asking to meet (or for them to mail you paper questionnaires) or online, from your computer or smartphone, through a protected and confidential site. If you live in the States, access the questionnaires through the US link (also provided elsewhere in this blog). People living in Brazil should access the questionnaires in Portuguese through the Brazilian link.
What do the questions ask about?
Your attitudes, thoughts and emotions about social relationships, health/illness and life, as well as some concrete questions about your health experiences in HIV.
I don't want people to find out I have HIV. What about my privacy?
We are extremely careful about this. Prejudice and stigma against people with HIV can be a fact of life these days (that's one of the reasons we are doing this study), so your privacy is protected above all else. You will have a choice of two different privacy options (confidential and anonymous participation). Both of them carefully protect your personal information (including your HIV status) and meet all standards of both the United States Department of Health and Human Services, and the Brazilian National Health Council. This is explained in more detail in the consent form that you fill out before starting the questionnaires.
How long does it take?
It takes most people about 45-50 minutes to fill out the questionnaires. It's better to do it all in one sitting, but you can take a break and pick up where you left off without problems. Just use the same computer or smartphone to access the link.
Is it heavy, or emotionally difficult, to do the questionnaires?
No. Quite the contrary. Some of the questions are a little more in-depth than your usual HIV questionnaire, so they can be interesting or thought-provoking. Almost all HIV-positive people who have already done the questionnaires in Brazil and the US have said they enjoyed the experience. We are more interested in how people make positive changes than rehashing old problems. People have told us the questionnaires provide a helpful framework for them to review important things in their lives, and that the opportunity to contribute to the improvement of quality-of-life and wellbeing in HIV/AIDS was rewarding.
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