Form Approved
OMB No: 0920-1901
Exp. Date: 12/31/2018
Participant ID:________ Data Collector ID:_______
Date:_________ Start time: __:__am/pm End time:__:__am/pm
Hello my name is__________ and I work for [Atlas Research or Abt Associates]. My company was selected by the Centers for Disease Control and Prevention (CDC), Division of HIV/AIDS Prevention (DHAP) to conduct a study to better understand the current barriers and facilitators to HIV prevention, care, and treatment for transgender women.
We are doing this study because we want to learn about how transgender women protect themselves from HIV, and how they take care of themselves if they have HIV. As part of this study, we are asking 20 transgender women living with HIV, 20 HIV-negative transgender women, and 10 providers who see transgender women in their clinic or office, to take part in a one hour interview in three different cities. The conversations we have will help us understand how we can improve HIV prevention and care for transgender women.
This interview is going to include a mix of open-ended and close-ended questions. For any close-ended questions, we will point to a list of responses for you to choose from. Throughout our discussion, if there are any questions you would prefer not to answer, just let me know and we can skip to the next question. Do you have any questions before we begin?
How would you describe the impact of HIV in the transgender community?
How would you describe living with HIV in the transgender community?
During the last 12 months, where did you get your income? (Check all that apply)
Working full time job, 35 hours or more a week |
1 |
Working part-time, less than 35 hours a week |
2 |
Unemployment benefits |
3 |
Public assistance (e.g., Welfare, food stamps, AFDC, GA, Cal-works) |
4 |
VA benefits |
5 |
Disability, SSA or SSI (Supplementary Security Income) |
6 |
Main partner or sexual partner supports me |
7 |
Other family |
8 |
Friends |
9 |
Sex work |
10 |
Selling drugs |
11 |
Hustling (petty theft, shoplifting, panhandling, recycling, scams) |
12 |
Self employed |
13 |
Other Please specify:_______________________________________ |
14 |
Refused to answer |
99 |
How has being a transgender woman affected your ability to maintain a stable income?
Have you ever experienced any form of discrimination due to your gender identity when trying to maintain a stable income?
Has being able to maintain a stable income affected your ability to seek HIV care and treatment? If so, how?
Do you pay for your current housing?
Yes |
1 |
No |
0 |
Don't Know |
77 |
Refused to Answer |
99 |
Not Applicable |
14 |
What best describes your current housing status (Check one)
Your own private house or apartment |
1 |
A home or apartment where you share a mortgage or lease with a roommate |
2 |
Someone else’s apartment or home |
3 |
A transitional house/halfway house |
4 |
A shelter |
5 |
On the streets/homeless |
6 |
Some other place Please specify:_______________________________________ |
7 |
Don't Know |
77 |
Refused to Answer |
99 |
How has being a transgender woman affected your ability to maintain stable housing?
Have you ever experienced any form of discrimination due to your gender identity when trying to maintain stable housing?
Has being able to maintain stable housing affected your ability to seek HIV care and treatment? If so, how?
Do you currently have health insurance coverage? This includes health exchange/Affordable Care Act (ACA/Obamacare), Medicaid, or Medicare. (Check one)
No |
0 |
Yes |
1 |
Don’t know |
77 |
Refused |
99 |
IF ANSWERED ‘NO’, ‘DON’T KNOW’, OR ‘REFUSED TO ANSWER’ TO QUESTION 7, SKIP TO QUESTION NUMBER 9
What kind of health insurance coverage do you currently have? (Check all that apply)
Private health insurance or HMO |
1 |
Medicaid |
2 |
Medicare |
3 |
TRICARE (CHAMPUS) |
4 |
Veterans Administration coverage |
5 |
Some other insurance Please specify:_______________________________________ |
6 |
Don’t know |
77 |
Refused to answer |
99 |
What types of health care or service providers do you currently see? (Check all that apply)
Primary Care or General Provider (e.g., Physician, Nurse Practitioner, or Physician’s Assistant) |
1 |
Infectious Disease//HIV Physician or Doctor |
2 |
Specialty Care Physician or Doctor Please list the specialty: |
3 |
Mental Health Provider |
4 |
Substance Abuse Counselor |
5 |
Social Worker and/or Case Manger |
6 |
Health Educator in HIV Prevention (e.g., support group counselor at a CBO) |
7 |
Housing Coordinator |
8 |
Other |
9 |
None |
10 |
Don’t know |
77 |
Refused to answer |
99 |
IF ANSWERED ‘NONE’ OR ‘REFUSED TO ANSWER’ TO QUESTION 9, SKIP TO QUESTION NUMBER 13
What do you look for in a healthcare provider?
What services are you seeing these providers for?
b. What is most important to you when you are receiving care?
c. How did you find your healthcare provider(s)?
Have you shared your gender identity with your healthcare providers?
What are/were your concerns about sharing your gender identity with healthcare providers? (e.g., confidentiality)
What are/were your concerns about sharing your gender identity with others in the healthcare setting? (e.g., case managers, receptionists)
How has sharing your gender identity affected your ability to receive competent health services?
Have you had difficulties with your care due to sharing your gender identity? How so?
Have you ever been denied care due to your gender identity?
As part of this study, we are also interviewing healthcare providers in each city. We are currently gathering a list of healthcare providers in each city that provide care to our transgender participants, and from that list we will select 3-4 healthcare providers in each city to invite them to participate in an interview. Are there any healthcare providers that are currently providing or have previously provided you care that you recommend we speak to? Of course, your participation in this interview remains strictly confidential so we will not in any way mention your name or participation in this study.
How long have you been seeing/did you see this provider(s)?
What kinds of healthcare services does this provider provide?
IF PARTICIPANT IS CURRENTLY SEEING A HEALTHCARE PROVIDER, SKIP TO QUESTION NUMBER 14
What prevents you from seeking care from a provider?
What would be most important to you if you decided to seek care?
Have you had any type of gender confirmation surgery?
Yes |
1 |
No |
0 |
Refuse to answer |
99 |
If yes, what types of gender confirmation surgery have you had? (Check all that apply)
Lower Penectomy (removed penis) |
1 |
Castration (removed testicles) |
2 |
Vaginoplasty (constructed a vagina) |
3 |
Upper Breast enhancement/augmentation |
4 |
Facial Feminization Surgery (FFS) |
5 |
Other Please specify:___________________________________ |
6 |
N/A |
7 |
Don’t know |
77 |
Refused to answer |
99 |
Does your health insurance cover any of the cost of gender confirmation surgeries?
Yes |
1 |
No |
2 |
N/A |
3 |
Don’t know |
77 |
Refused |
99 |
If yes, what was covered? ______________________________________
IF PARTICIPANT HAS NOT HAD LOWER GENDER CONFIRMATION SURGERY OR ‘REFUSED TO ANSWER’ TO QUESTION 14, SKIP TO QUESTION NUMBER 17
You mentioned having lower gender confirmation surgery. What, if anything, has your provider told you regarding safer sex after your surgery?
Has your provider discussed other types of HIV prevention strategies with you after your surgery?
In what ways, if any, has the healthcare you receive changed since your surgery?
Have you taken any hormones in the past 12 months? (Check one)
No |
0 |
Yes |
1 |
Don’t know |
77 |
Refused to answer |
99 |
Can you tell me more about your experiences using hormones?
What types of hormones have you used? (Check all that apply)
Injectable |
1 |
Pills |
2 |
Patch |
3 |
Other: Please Specify: |
4 |
Don’t know |
77 |
Refused to answer |
99 |
Where did you get the hormones?
Do you think taking hormones has provided you with opportunities to receive healthcare? If yes, how so?
Can you tell me more about situations where you have used syringes for hormones outside of medical settings?
Did you have any concerns about using syringes for hormones outside of medical settings? If so, what are they?
Have you been able to discuss your concerns with a healthcare provider?
Have you used silicone to change the shape of your body in the past 12 months? (Check one)
No |
0 |
Yes |
1 |
Don’t know |
77 |
Refused to answer |
99 |
Can you tell me more about your experiences using silicone?
Where did you get the silicone?
Can you tell me more about situations where you have used syringes for silicone or other substances outside of medical settings?
Did you have any concerns about using syringes for silicone or other substances outside of medical settings? If so, what are they?
Have you been able to discuss your concerns with a healthcare provider?
In the past 12 months, about how many sexual partners have you had?
_______ partners
Don’t know Refused to answer |
77 99 |
During the past 12 months, have you had sex with (Check all that apply):
Men / Cis (non-trans) men |
1 |
Women / Cis (non-trans) women |
2 |
Transgender men |
3 |
Transgender women |
4 |
Other Please specify: ___________________________ |
5 |
Refused to answer |
99 |
In the past 12 months, have you had sex with a (Check all that apply):
Steady partner or main partner (e.g., someone with whom you have a relationship) |
1 |
Casual partner |
2 |
Exchange partner (someone who you paid or paid you to have sex with for money, drugs, housing, other items or favors) |
3 |
Refused to answer |
99 |
Do you currently have a steady/main partner who has a penis? (This could include partners with whom you have a romantic relationship with, or a steady exchange partner.)
No |
0 |
Yes |
1 |
Refused to answer |
99 |
IF ANSWERED ‘NO’ OR ‘REFUSED TO ANSWER’ TO QUESTION 24, SKIP TO QUESTION NUMBER 26
What is the HIV status of your main/steady partner? (This could include partners with whom you have a romantic relationship with, or a steady exchange partner.)
HIV negative |
0 |
HIV positive |
1 |
Don’t know |
77 |
Refused to answer |
99 |
Have you been the receptive or insertive partner during anal sex?
Receptive only |
1 |
Insertive only |
2 |
Both |
3 |
Neither |
4 |
Don’t know |
77 |
Refused to answer |
99 |
[If participant has been the receptive partner during anal sex] How frequently do you use condoms when you have receptive anal sex?
[If participant has been the insertive partner during anal sex] How frequently do you use condoms when you have insertive anal sex?
In what kind of situation would you use condoms during anal sex?
Could you tell me about some of the reasons you would not use condoms during anal sex?
If you are not using condoms, what do you do to protect yourself or stay healthy?
Have you been the receptive or insertive partner during vaginal sex? (NOTE to interviewer, please align questions to participant’s response re: gender confirmation surgery in Question 14)
Receptive only |
1 |
Insertive only |
2 |
Both |
3 |
Neither |
4 |
Don’t know |
77 |
Refused to answer |
99 |
[If participant has been the receptive partner during vaginal sex] How frequently do you use condoms when you have receptive vaginal sex?
[If participant has been the insertive partner during vaginal sex] How frequently do you use condoms when you have insertive vaginal sex?
In what kind of situation would you use condoms during vaginal sex?
Could you tell me about some of the reasons you would not use condoms during vaginal sex? (moved from below)
What do you do to avoid the risk of getting an STD when you have vaginal sex without a condom? (moved from below)
How do you talk about condom use with your sex partners?
Do you have agreements with your current main/steady partner about anal sex with other partners?
Agreements could be about whether or not you will use condoms during anal within your relationships, whether or not you will have insertive sex with someone other than your partner, whether or not you will use condoms when having insertive sex with someone other than your partner, etc.
Can you please tell me more about that?
In your lifetime, have you ever been physically abused by a romantic or sexual partner? By physical abuse we mean a range of behaviors from slapping, pushing, or shoving to severe acts, such as being beaten, burned, or choked.
No |
0 |
Yes |
1 |
Refused to answer |
99 |
In your lifetime, have you ever been emotionally abused by a romantic or sexual partner? By emotional abuse we mean name-calling, insulting, or humiliating you, or trying to monitor and control or threaten you.
No |
0 |
Yes |
1 |
Refused to answer |
99 |
IF ANSWERED ‘NO’ OR ‘REFUSED TO ANSWER’ TO QUESTION 29 AND QUESTION 30, SKIP TO QUESTION NUMBER 33
Do you feel as though the abuse you have experienced is due to being transgender?
No |
0 |
Yes |
1 |
Refused to answer |
99 |
If so, how?
How has your experience with physical, sexual or emotional harm affected your HIV prevention, care and treatment or strategies?
Has your experience affected your ability to negotiate condom use with your partner or partners?
When did you first learn of your HIV positive diagnosis?
_______ (month/year)
Don’t know Refused to answer |
77 99 |
Tell me about your experience receiving a positive HIV diagnosis.
What made you decide to get tested for HIV?
Did you know people in your social circle (friends, family, and partners) who had been tested for HIV?
What are some of the things, if any, that made it easier for you to get tested for HIV?
What are some of the things, if any, that made it difficult for you to get tested for HIV? (e.g., confidentiality, disclosing gender identity, fear, etc.)
Have you ever shared your HIV status with anyone?
If yes, can you tell me about your experience with sharing your HIV status to your friends, family, and current or past partners?
What made you decide to disclose your HIV status to your current or past sex partners?
What made you decide to disclose your HIV status to your friends and family?
Tell me about a time when you were concerned about confidentiality in disclosing your status.
Has disclosing your HIV status ever put you in danger? How so?
Have you been in a situation where you felt your status was exposed rather than shared or disclosed by choice? If so, can you tell me about that situation?
Are you currently receiving HIV care?
Yes |
1 |
No |
2 |
Refused to answer |
99 |
IF ANSWERED ‘NO’ OR ‘REFUSED TO ANSWER’ TO QUESTION 36, SKIP TO QUESTION NUMBER 43
How long have you been receiving HIV care?
____________ years _________months
Don’t know Refused to answer |
77 99 |
Have you ever had any gaps in your HIV care history? (e.g., stopped taking your medications or stopped seeing your provider)
Yes |
1 |
No |
2 |
IF ANSWERED ‘NO’ TO QUESTION 386, SKIP TO QUESTION NUMBER 40
What were some of the reasons you stopped receiving HIV care? (You may check more than one)
The side effects or interactions of HIV medications made taking medications not worth the benefit |
1 |
Unable to stay adherent to medications |
2 |
Could not pay for doctors’ visits and/or medications due to a gap in health insurance or ADAP coverage |
3 |
Unable to access provider because appointments were difficult to schedule and/or attend |
4 |
Other Please specify:________________________________________ |
5 |
Which of the following have been made available to you at your current HIV clinic? (Check all that apply)
Gender-neutral bathrooms |
1 |
Gender affirming materials |
2 |
Transgender-identified staff |
3 |
Practice/clinic staff that are knowledgeable about transgender health |
4 |
Referrals to organizations that are transgender-competent |
5 |
Other Please specify_______________________________________ |
6
|
How did you get connected to this HIV care clinic?
What helped you get into HIV care?
What keeps you motivated to attend appointments at your HIV care clinic?
What helps you stay in HIV care?
What are the things that make it difficult for you to attend a medical appointment at an HIV care clinic (e.g., lack of time, money, insurance, transportation)?
Have your family, friends, and/or community ever influenced your intention to seek HIV care? If so, how? [Note to interviewer: Please ensure the interviewee identifies if they are talking specifically about family, friends, or communities.]
How have they encouraged you to get into care or keep you in care?
How have they kept you from getting into care or staying in care?
What do they/can they do that is helpful?
What do theydo that is not helpful?
IF INTERVIEWEE IS CURRENTLY IN HIV CARE, SKIP TO QUESTION 44.
What has stopped you from connecting to an HIV care clinic? (NOTE to interviewer, if question is not clear, probe with: stigma, discrimination, lack of provider competency)
What are the things that make it difficult for you attend a medical appointment at an HIV care clinic)? (NOTE to interviewer, if question is not clear, probe with: lack of time, money, insurance, transportation)
Have you ever taken medication to treat HIV (antiretroviral therapy/ART)?
Yes |
1 |
No |
2 |
Refused to answer |
99 |
IF ANSWERED ‘NO’ OR ‘REFUSED TO ANSWER’ TO QUESTION 442, SKIP TO QUESTION NUMBER 59
Are you currently receiving or taking medications to treat HIV (antiretroviral therapy (ART))?
Yes |
1 |
No |
2 |
Refused to answer |
99 |
IF ANSWERED ‘NO’ OR ‘REFUSED TO ANSWER’ TO QUESTION 53, SKIP TO QUESTION NUMBER 51
How long have you been taking medications to treat HIV (antiretroviral therapy (ART))?
____________ years _________months
Where do you currently obtain medications to treat HIV (antiretroviral therapy (ART))?
Through a prescription from a doctor |
1 |
Off the Internet |
2 |
From someone on the street |
3 |
From a friend |
4 |
Other |
5 |
Please specify:_______________________________________ |
|
Don’t know |
77 |
Refused |
99 |
How do you cover the costs of ART? (Check all that apply)
Insurance |
1 |
AIDS Drug Assistance Program (ADAP) |
2 |
Special Benefits Pharmaceutical Assistance |
3 |
Other drug assistance program Please specify:_______________________________________ |
4 |
Don’t know |
77 |
Refused |
99 |
When was your last viral load test?
Within the past 6 months |
1 |
Within the past 12 months (1 year) |
2 |
Within 12 months of receiving your HIV diagnosis |
3 |
Don’t know |
77 |
Refused to answer |
99 |
What are some of the things that made you decide to take HIV medications?
What helps you take your medication as prescribed?
What makes it difficult for you to take your medication regularly?
Do you have any concerns about taking these medications?
IF CURRENTLY TAKING HIV MEDICATIONS, SKIP TO QUESTION NUMBER 52
Can you tell me what are your concerns about taking these medications?
Is there anything else that you would like to share with us related to your experiences with HIV prevention activities?
Public reporting burden of this collection of information is estimated to average 1 hour per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; Attn: OMB-PRA (0920-1901)
| File Type | application/vnd.openxmlformats-officedocument.wordprocessingml.document |
| Author | Clarke Erickson |
| File Modified | 0000-00-00 |
| File Created | 2021-01-25 |