· web viewat the time s/he was first diagnosed with hiv, could the deceased do these...
TRANSCRIPT
# Question Response Instructions
1a. Was the deceased ever tested for HIV? yes no do not know
1b. Number of HIV tests done 1 2 or more do not know
If #1a is YES, answer this question
1c. When was the first positive test for HIV? In which month or year?Month: (dropbox selection: January to December)ORYear: (dropbox selection: 1990 to current year) do not know
If #1a is YES, answer this question
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HIV/AIDS Treatment Module – Adult Questionnaire V5 (01-12-16)
Section 1: HIV Diagnosis
# Question Response Instructions
1d. Where did s/he receive the first positive test for HIV? Out Patient Department / Voluntary Counselling and Testing
Ante-natal Clinic / Prevention of Mother-To-Child Transmission
Tuberculosis program as a patient staying at the hospital before a scheduled surgery private labs at home/self-testing do not know
If #1a is YES, answer this question
1e. How long after first positive test for HIV did the deceased start HIV medication? less than one month
one year or less more than one year never started do not know
If #1a is YES, answer this question
1f. How long after first positive test for HIV did the deceased die? less than one month one year or less more than one year do not know
If #1a is YES, answer this question
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# Question Response Instructions
2. At the time s/he was first diagnosed with HIV, could the deceased do these activities?
Walk on their own
yes no do not know
Eat on their own
yes no do not know
Swallow liquids on their own
yes no do not know
Was s/he bed ridden?
yes no do not know
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# Question Response Instructions/Comments
3. Did the deceased ever go to a clinic or other service for HIV positive people? yes
no do not know
4a. How did s/he usually get to the HIV clinic or other service for HIV positive people? (check all that apply) walk
bicycle public transportation (incl. bike taxi) private vehicle do not know
If #3 is YES, answer this question
4b. How many hours did it usually take to go from home to the centre where s/he got their HIV cares? (one way) 0-12 hours
more than 12 hours do not know
If #3 is YES, answer this question
4c. What was the cost of going from home to the centre where the deceased received their HIV care? (total cost for there and back)
local currency: If #3 is YES, answer this question
5. Did s/he start cotrimoxazole? (show colour picture of pill and pill bottle) yes no do not know
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Section 2: HIV Access
# Question Response Instructions/Comments
6. Did s/he start HIV medications? yes no do not know
7a. If no, why not? (check all that apply) s/he did not like taking pills s/he did not want other people to know
s/he was sick did not feel sick pills not available was told by doctor not to start pills it costs too much money s/he died before starting pills do not know
other:
If #6 is NO, answer this question
7b. What were the reasons the doctor told him / her not to start pills? Tuberculosis test results needed CD4 count results needed s/he had another infection do not know
other:
If “was told by doctor not to start pills” in #7a is selected
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# Question Response Instructions/Comments
8. When did s/he start the HIV medications? In which month or year?Month: (dropbox selection: January to December)ORYear: (dropbox selection: 1990 to current year)
do not know
If #6 is YES, answer this question
9. When s/he first started the HIV medications, could the person: Walk on their own
yes no do not know
Eat on their own
yes no do not know
Swallow liquids on their own
yes no do not know
Was s/he bed ridden?
yes no do not know
If #6 is YES, answer this question
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# Question Response Instructions/Comments
10. How did s/he usually travel to collect the HIV medications? walk bicycle public transportation (incl. bike taxi) private vehicle HIV health care centre arranged drug
delivery another person brought him/her the drugs do not know
If #6 is YES, answer this question
11. On days where s/he only had to pick up their medication, how much time did it usually take from leaving home to returning home to get their HIV medications?
0-12 hours more than 12 hours do not know
If #6 is YES, answer this question
12. Were the HIV medications available at the HIV clinic or pharmacy? almost always sometimes never do not know
If #6 is YES, answer this question
13a. Did she have any difficulties paying for the HIV medications? yes no no because medicine is free do not know
If #6 is YES, answer this question
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# Question Response Instructions/Comments
13b. What was the impact of the financial difficulties? (check all that apply) had to get another job to afford drugs had to borrow money to afford drugs family had to pay for drugs family had to borrow money to afford
drugsother:
do not know
If #13a is YES, answer this question
14. In the last year, how often was s/he supposed to go to the HIV health care centre? every week
every month every few months do not know
15a. In the last year, of planned HIV health care centre visits, how many did s/he miss? none
some/a few most/all do not know
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# Question Response Instructions/Comments
15b. What were the most common reasons? (check all that apply) too sick to travel too far away forgot no person to help or accompany to clinic no transportation to clinic needed to work and could not go to clinic needed to care for family living in the area (migration) clinic did not have pills clinic closed/had other problems did not tell others of HIV status (non
disclosure) did not feel sick did not want to goother:
do not know
If #15a is SOME/A FEW or MOST/ALL, answer this question
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# Question Response Instructions/Comments
16a. Did the deceased have someone who usually monitored and supervised taking of their HIV pills ("treatment guardian")? yes
no do not know
16b. If yes- relationship to deceased (check all that apply) wife/husband brother/sister son/daughter mother/father grandchild son-in-law/daughter-in-law brother-in-law/sister-in-law parent-in-law grandfather/grandmother other relatives neighbour/no relation do not know
If #16a is YES, answer this question
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Section 3: HIV Adherence (If #6 is YES, answer questions in this section)
# Question Response Instructions/Comments
17. Did s/he take these pills? (show colour picture of first line therapy and pill bottles - put number beside each and select each) Pill 1
Pill 2 Pill 3 Pill .... none of these pills do not know
18. Did s/he share these pills with anyone else? yes no do not know
19a. Did this medication cause side effects (such as diarrhea, pain, nausea, vomiting, rash, tingling or burning feeling, tiredness, and so on)? yes
no do not know
19b. What were the side effects of these pills? (check all that apply) stomach/digestive skin problems fatigue mental/nervous system breathing/lungother:
do not know
If #19a is YES, answer this question
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# Question Response Instructions/Comments
20a. How often during a typical week would s/he miss the HIV medications? never missed any pills (took on most days)
took on some days missed pills on most days do not know
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# Question Response Instructions/Comments
20b. What was the main reason(s) for missing the HIV pills? (check all that apply) forgot
did not have pills with him/her too sick to take pills did not want to take pills pills were not working side effects of pills (pills made them feel
sick) felt better with the pills so stopped taking
pills felt too healthy to take pills could not afford pills she became pregnant ran out of pills at home pills not available at the clinicother:
do not know
If #20a is TOOK ON SOME DAYS or MISSED PILLS ON MOST DAYS, answer this question
21. Did his/her health improve initially after starting HIV medications? yes, a little bit yes, a lot no change worsened do not know
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# Question Response Instructions/Comments
22a. Did s/he ever stop taking the HIV medications for more than 2 weeks? yes no do not know
22b. What were the main reason(s) to stop? (check all that apply) too sick to take pills did not want to take pills side effects of pills (pills made them feel
sick) felt better with the pills so stopped taking
pills told to stop by religious or community
tradition could not afford pills doctor told them to stop ran out of pills at home pills not available at the clinicother:
do not know
If #22a is YES, answer this question
23. Did s/he ever have to change these HIV medications? yes no do not know
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# Question Response Instructions/Comments
24. What were the main reason(s) to change the pills? (check all that apply) pills were not working side effects of pills she became pregnant clinic ran out of original pills s/he was diagnosed with tuberculosisother:
do not know
If #23 is YES, answer this question
25. Did s/he change to these pills? (show colour picture of second line therapy and pill bottles) (check all that apply) Pill 1
Pill 2 Pill 3 Pill .... Pill .... none of these pills do not know
If #23 is YES, answer this question
26a. How often during a typical week would s/he miss the changed HIV medications? never missed any pills (took on most
days) took on some days missed pills on most days do not know
If #23 is YES, answer this question
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# Question Response Instructions/Comments
26b. What was the main reason(s) for missing the changed HIV pills? (check all that apply) forgot
did not have pills with him/her too sick to take pills did not want to take pills pills were not working side effects of pills (pills made them feel
sick) felt better with the pills so stopped taking
pills felt too healthy to take pills could not afford pills she became pregnant ran out of pills at home pills not available at the clinic
other:
do not know
If #26a is TOOK ON SOME DAYS or MISSED PILLS ON MOST DAYS, answer this question
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# Question Response Instructions/Comments
27. Did his/her health initially start to get better on changed HIV medications? yes, a little bit yes, a lot no change worsened do not know
If #23 is YES, answer this question
28a. Did s/he ever stop taking the changed HIV medications for more than 2 weeks? yes
no do not know
If #23 is YES, answer this question
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# Question Response Instructions/Comments
28b. What were the main reason(s) to stop? (check all that apply) too sick to take pills did not want to take pills side effects of pills (pills made them feel
sick) felt better with the pills so stopped taking
pills told to stop by religious or community
tradition could not afford pills doctor told them to stop ran out of pills at home pills not available at the clinicother:
do not know
If #28a is YES, answer this question
29a. Did the newer (changed) pills cause side effects (such as diarrhea, pain, nausea, vomiting, rash, tingling or burning feeling, tiredness, and so on)? yes
no do not know
If #23 is YES, answer this question
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# Question Response Instructions/Comments
29b. What were the side effects of the newer (changed) pills? (check all that apply) stomach/digestive
skin problems fatigue mental/nervous system breathing/lungother:
do not know
If #29a is YES, answer this question
30. Was s/he still taking HIV medications about 3 months before death? yes no do not know
31. Was s/he still getting care (in person or via home visit) by the HIV clinic about 3 months before death? yes
no do not know
32a. Did s/he ever try alternative treatment for HIV? yes no do not know
32b. What type of alternate treatment did s/he try? treatment name/description If #32a is YES, answer this question
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# Question Response Instructions/Comments
33. Did the deceased receive medication for tuberculosis? yes no do not know
34. Which of these pills did s/he take for tuberculosis? (show colour picture of pills and pill bottles, including prophylactic TB pills - Put number beside each) (check all that apply)
Pill 1 Pill 2 Pill 3 Pill .... do not know
If #33 is YES, answer this question
35a. How often during a typical week would s/he miss the tuberculosis medications? never missed any pills (took on most days)
took on some days missed pills on most days do not know
If #33 is YES, answer this question
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Section 4: Opportunistic Infections
35b. What was the main reason(s) for missing the tuberculosis pills? (check all that apply) forgot
did not have pills with him/her too sick to take pills did not want to take pills pills were not working side effects of pills (pills made them feel
sick) felt better with the pills so stopped taking
pills felt too healthy to take pills could not afford pills she became pregnant ran out of pills at home pills not available at the clinic
other:
do not know
If #35a is TOOK ON SOME DAYS or MISSED PILLS ON MOST DAYS, answer this question
36. Did his/her health initially start to get better on the tuberculosis pills? yes, a little bit yes, a lot no change worsened do not know
If #33 is YES, answer this question
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37a. Did s/he ever stop taking the tuberculosis pills? yes no do not know
If #33 is YES, answer this question
37b. What were the main reason(s) to stop? (check all that apply) too sick to take pills did not want to take pills side effects of pills (pills made them feel
sick) felt better with the pills so stopped taking
pills told to stop by religious or community
tradition could not afford pills doctor told them to stop ran out of pills at home pills not available at the clinic
other:
do not know
If #37a is YES, answer this question
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