HIV Long Term Survivors Project Survey

* Please note that all information will be kept confidential by the researcher for a period of no more than seven (7) years after which point it will be destroyed. No personal information will be shared with third parties, commercial or otherwise. Please refer to the confidentiality agreement you have signed for more information. Please read all questions carefully before answering. Not all questions are in the same format. Please answer ALL questions. This survey and your information are encrypted and confidential. If you have any questions or concerns, please email the primary researcher, James A. Forbes (forbes.james.a@gmail.com).

Name * First Last
Email *
Section A: The following section deals with general information about you and your experience as an HIV+ person.
Question 1: I am
HIV+ Living with AIDS Not HIV + I don’t know
Question 2: How long have you been HIV+ (select the answer that best describes your situation)?
0-9 Years 10-19 Years 20-29 Years 30 + Years I don't know
Question 3: How easy is it for you to speak about your HIV status?
Extremely Easy Very Easy Somewhat Easy Uneasy Very Uneasy
Question 4: I identify as (gender)
Male Female Transman Transwoman I am
Question 5: I consider myself (sexuality)
Gay Bisexual Lesbian Straight I am
Question 6: I am (age)
20-29 30-39 40-49 50-59 60-69 70-79 80+
Question 7: I consider myself
Black Native American Latinx South Asian Asian White Multiracial I am
Question 8: I identify as, or consider myself to be
Buddhist Hindu Muslim Christian Jewish Atheist Other
Question 9: I am currently
Employed, Full Time Employed, Part Time Unemployed Receiving Social Assistance Pensioner Other
Question 10: My annual income is
Less than 20,000 a year Less than 40,000 a year Less than 60,000 a year More than 60,000 a year
Question 11: I currently live
Alone With a partner With family With friends In assisted living Other
Question 12: I am
Single Married Divorced In a domestic partnership In a polyamorous relationship Other
Question 13: I am
On HAART Not taking medication for HIV On PrEP On PART Other
Question 14: I have been taking ARV therapy (HIV meds of any kind for any reason) for
Less than 5 years Less than 15 years Less than 20 years More than 20 years Never
Question 15: I have had _____ side effects (choose the answer that best describes your experience). If you are HIV-, choose "No".
No Some Mild Regular Severe Debilitating
Question 16: I have had the following side effects/symptoms (choose all that apply, even if you are HIV-)
Neuropathy Lipodistrophy Insomnia Memory Loss Lack of Appetite Nausea Vomiting Liver Problems Kidney Problems Bone mass loss Dementia Other
Question 17: My highest level of education is
High School Technical Degree Bachelor of Arts Masters of Arts Doctor of Philosophy Masters of Science Doctor of Science Professional Certificate Self-taught Other
Question 18: Choose the field that most closely matches your recent or immediately prior work/career history
Healthcare Law Education Retail Service Sex Work Business Management Skilled Trades Entrepreneur Manual Labour Artist Musician Writer Housemaker Filmmaker Other
Question 19: I am (choose the one that BEST describes you)
Able Differently Abled Autistic/Asperger's Para ADHD Neurotypical Deaf Blind Other
Section B: The following section deals with your personal experience with HIV, and sexuality. Please read the questions carefully, some formats are different.
Question 20: I consider myself sexually
Extremely active Very active Moderately active Somewhat active Not very active Celibate
Question 21: I have had _______ partners (any sexual act with any person including masturbation) in the last month:
More than 20 More than 15 More than 10 More than 5 Less than 5 One only None Other
Question 22: I have had ____ individual partners (any sexual act with any person including masturbation) in the last three months:
More than 20 More than 15 More than 10 More than 5 Less than 5 One only None Other
Question 23: I have had ____ individual partners (any sexual act with any person including masturbation) in the last year
More than 20 More than 15 More than 10 More than 5 Less than 5 One only None
Question 24: Please indicate your agreement with the following statement (1 agree strongly, 5 disagree) “I enjoy my sex life or sexuality to a high degree”
1 2 3 4 5
Question 25: I have had penetrative sex (active or receptive) with a condom in the past month
Yes No
Question 26: I have had penetrative sex (active or receptive) without a condom in the past month
Yes No
Question 27: I have had penetrative sex (active or receptive) with a condom in the past year
Yes No
Question 28: I have had penetrative sex (active or receptive) without a condom in the past year
Yes No
Question 29:I have had oral sex within the last month
Yes No
Question 30: I have had oral sex within the last year
Yes No
Question 31: I have masturbated in the last month
Yes No
Question 32: I have masturbated in the last year
Yes No
Question 33: I have hugged/held someone in the last month/I have been hugged/held in the last month.
Yes No
Question 34: I have hugged/held someone in the last year/I have been hugged/held in the last year.
Yes No
Question 35: Indicate your agreement with the following statement (1 is strongly agree 5 is disagree) Sex and a fulfilling sex life are very important to me.
1 2 3 4 5
Question 36: Indicate your agreement with the following statement (1 is strongly agree 5 is disagree) I believe that I am having the sex I need and deserve (in terms of quality).
1 2 3 4 5
Question 37: Indicate your agreement with the following statement (1 is strongly agree 5 is disagree) I believe that I am having enough sex (in terms of quantity).
1 2 3 4 5
Section C: This sections deals with your emotional state, resilience and mood concerning life in general. Please read all questions carefully as some of the formats may be different.
Question 38: I consider myself to be a ________ person (choose the answer that best describes your overall mood or self-perception.
Happy Excited Moody Sad Fearful Calm Balanced Angry Other
Question 39: Others consider me to be a ________ person (choose the answer that best describes what you think others perceive your overall mood to be).
Happy Excited Moody Sad Fearful Calm Balanced Angry Other
Question 40: Which second best choice would you use to describe yourself in terms of mood overall?
Happy Excited Moody Sad Fearful Calm Balanced Angry Other
Question 41: Please rate the following statement (1 is strongly agree and 5 is disagree) I am generally optimistic about life
1 2 3 4 5
Question 42: Please rate the following statement (1 is strongly agree and 5 is disagree) I am satisfied with the quality of my life
1 2 3 4 5
Question 43: Please rate the following statement (1 is strongly agree and 5 is disagree) I am hopeful for the future
1 2 3 4 5
Question 44: Please rate the following statement (1 is strongly agree and 5 is disagree) HIV is not a problem in my life
1 2 3 4 5
Question 45: Please rate the following statement (1 is strongly agree and 5 is disagree). I am a beautiful person
1 2 3 4 5
Question 46: Please rate the following statement (1 is strongly agree and 5 is disagree). Other people like me
1 2 3 4 5
Question 47: Please rate the following statement (1 is strongly agree and 5 is disagree). Looks do not matter to me
1 2 3 4 5
Question 48: Please rate the following statement (1 is strongly agree and 5 is disagree). Personality is more important than looks
1 2 3 4 5
Question 49: Please rate the following statement (1 is strongly agree and 5 is disagree). Religion and/or Spirituality is important to me
1 2 3 4 5
Section D: This section asks some follow up questions about hobbies, exercise/recreation, religious/spiritual attitudes and re-phrases some key questions from the earlier sections. Please answer all questions, and please refrain from going back to previous answers.
Question 50: I practice one or more of the following exercise regimes (choose all that apply)
Yoga Pilates Weight Training Team Sports Swimming Walking/Running Dancing Other
Question 51: I practice one or more of the following mental/spiritual activities (choose all that apply)
Philosophy Breathing Exercises 12 Step/Group Rehab Meditation Acupuncture/Accupressure Massage Religious services Other
Question 52: Please rate the following statement (1 is strongly agree and 5 is disagree) My Religious or Spiritual beliefs are important to me
1 2 3 4 5
Question 53: Please rate the following statement (1 is strongly agree and 5 is disagree) My exercise regime is important to me
1 2 3 4 5
Question 54: Please rate the following statement (1 is strongly agree and 5 is disagree) I have trouble accessing recreation services that I need (for any reason)
1 2 3 4 5
Question 55: Please rate the following statement (1 is strongly agree and 5 is disagree) I have trouble practicing my spirituality (for any reason)
1 2 3 4 5
Question 56 Please rate the following statement (1 is strongly agree and 5 is disagree). My sexuality is important to me
1 2 3 4 5
Question 57: Please rate the following statement (1 is strongly agree and 5 is disagree) My HIV is not a factor in my enjoyment of life
1 2 3 4 5
Question 58: I do one or more of the following activities (please choose all that apply)
Sing alone/in a group Collecting Reading Gardening Crafting Painting Social Group Nudism/Naturism Camping Hiking Other
Question 59: Please rate the following statement (1 is strongly agree and 5 is disagree) My hobbies, pass-times or social activities are important to me
1 2 3 4 5
Question 60: Please rate the following statement (1 is strongly agree and 5 is disagree) I am excited for what life will bring
1 2 3 4 5
Question 61: Please rate the following statement (1 is strongly agree and 5 is disagree) I wish that I had more access to social groups and recreation
1 2 3 4 5
Question 62: Please rate the following statement (1 is strongly agree and 5 is disagree) I am satisfied with my sex life
1 2 3 4 5
Question 63: Please rate the following statement (1 is strongly agree and 5 is disagree) I consider myself an unhappy person
1 2 3 4 5
Question 64: I am interested in being considered for a follow up interview about these questions and other topics related to being a HIV+ long term survivor (not all applicants will be contacted or interviewed)
Yes No
If you answered "yes" to Question 64, please tell me (briefly) why you would like to be interviewed and what issues are important to you

HIV Long Term Survivors Project Survey

HIV Long Term Survivors Project Survey

Section A: The following section deals with general information about you and your experience as an HIV+ person.

Section B: The following section deals with your personal experience with HIV, and sexuality. Please read the questions carefully, some formats are different.

Section C: This sections deals with your emotional state, resilience and mood concerning life in general. Please read all questions carefully as some of the formats may be different.

Section D: This section asks some follow up questions about hobbies, exercise/recreation, religious/spiritual attitudes and re-phrases some key questions from the earlier sections. Please answer all questions, and please refrain from going back to previous answers.