QUESTIONNAIRE: UNDERSTANDING OF ARV PIL Baseline Interview
1.11 LITERACY TEST
Give the patient a medicine label to read. Explain that this is not about their ARVs or any of their own medicines
1. How many teaspoons must you take when you start this medicine? Correct1 Incorrect2
2. How many teaspoons must you take each time thereafter? Correct1 Incorrect2
3. If you take this medicine at 12:30 pm when can you start eating your lunch? * Correct1 Incorrect2 4. You are usually told to take medication with water. Can you take this medicine with milk? * Correct1 Incorrect2
5. Will you keep any medicine to use next time you get sick? Correct1 Incorrect2
6. How often must you take this medicine? Correct1 Incorrect2
7. What can this medicine do to your teeth? Correct1 Incorrect2
8. How should this medicine be stored? Correct1 Incorrect2
9. Literacy rating
*these are weighted therefore total literacy rating out of 10
SECTION 2: HEALTH PASSPORT DATA
2.1 Body Mass Index 2.1.1 Weight 2.1.2 Height
Body Mass Index
2.2 Chronic medication for co-morbidities or opportunistic infections
2.3 Adverse Reactions
2.4 Regimen changes
2.5 Clinical Data
2.5.1. CD4 count
2.5.2 Viral load
2.6 Pharmacy refill dates
SECTION 3: EVALUATION OF HIV/AIDS KNOWLEDGE AND ARV INFORMATION
3.1.1.Language of PIL that is chosen for
reading English2 Xhosa1
3.1.2 Regimen of ARVs 1a 1b 1c 1d
3.1.3 Time taken to read the leaflet in minutes
3.2 Finding and Understanding of instructions
EXP and CTRL: Ask patient the question and assess if answer is correct or incorrect.
EXP: Ask patient to locate the answer on the PIL. Then ask patient to explain in their own words.
3.2.1. What are the names of the ARV medicines that you are taking? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me the names?
N/A0 Correct1 Incorrect2
3.2.2. How often and when should efavirenz/ nevirapine be taken? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.3. Can a person spread HIV/AIDS to other people while taking ARVs through unprotected sex?
Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.4 Can you take your ARVs on an empty stomach? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.5 Like other medicines, ARVs have both good and unpleasant effects. Correct1 Incorrect2
What are some of these unpleasant or side effects? N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.6 What do ARVs do to the amount of HIV virus (viral load) in the body? Correct1 Incorrect2 N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.7 Can the ARVs cure the HIV virus? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.8 When you are on ARVs, what must you do before you take other medicines? Correct1 Incorrect2 N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.9 What should you do if you have a fever with or without chills (get hot, then cold)? Correct1 Incorrect2 N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.10 How long do you have to take ARVs? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.11 If you experience stomach pain, nausea and vomiting after you have been on ARVs , what should you do?
Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.12 Where should you keep your ARVs? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.13 Can you tell me some of side effects that might happen in the first Correct1 Incorrect2
6 weeks of starting ARVs? N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.14 What happens to the good cells (CD4 cells) when you start taking the ARVs? Correct1 Incorrect2 N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.15 Can you tell me some of the side effects that might happen after 3-6 months Correct1 Incorrect2
of taking ARVs? N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.16 What should you do if you forget to take a dose of ARVs? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.17. If a friend runs out of his/her ARVs can you share your ARV’s with that friend? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.18 Are there any things that you should tell the doctor about before taking ARVs for the first time?
Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.19 Are there any places where you shouldn’t keep your ARVs? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.20 How many times a day should you take Lamivudine (3TC)?
Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.21 If you see the sangoma who gives you medicine, can you take it with your ARVs or what must you do?
Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.2.22 If you are pregnant or trying to get pregnant , what should you do? Correct1 Incorrect2
N/A0 Located1 Not located2
Can you tell me in your own words? N/A0 Correct1 Incorrect2
3.3 No. of questions answered correctly (total questions=22) 3.3.1 CONTROL: Answered questions correctly without PIL
3.3.2 EXPERIM: Located information correctly 3.3.3 EXPERIM: Answered questions correctly with PIL
3.4 Rating for understanding of the leaflet Both located and understood (total score =40) 3.5 Sources of information for patients 3.5.1 Where have you learnt about HIV/AIDS from?
Doctor1 Yes1 No2
Nurse2 Yes1 No2
Pharmacist3 Yes1 No2
Community Health worker4
Yes1 No2
Religious leader5 Yes1 No2
Isangoma6 Yes1 No2
Family7 Yes1 No2
Friends8 Yes1 No2
School9 Yes1 No2
Posters10 Yes1 No2
Newspapers12 Yes1 No2
3.5.1 Where have you learnt about your ARVs from?
Doctor1 Yes1 No2
Nurse2 Yes1 No2
Pharmacist3 Yes1 No2
Community Health worker4
Yes1 No2
Religious leader5 Yes1 No2
Isangoma6 Yes1 No2
Family7 Yes1 No2
Friends8 Yes1 No2
School9 Yes1 No2
Posters10 Yes1 No2
Newspapers12 Yes1 No2
SECTION 4: SELF EFFICACY
Modified HIV-ASES test – Barford and Dowse
I am going to ask you about things that may happen when you have to take your ARVs. Sometimes, this could mean what happens when you are taking your medications, and other times it could mean how you deal with things like what you eat or whether you exercise or take vitamins. So, in these questions, when I ask you about your “treatment”, I am talking not only about your ARVs but also other things that you do to keep yourself health.
For the following questions I will ask you to tell me in the past month, including today, how confident you have been that you can do the following things. Use this response scale ranging from 0 (cannot do at all) to 10 (completely certain can do).
In the past month, how confident have you been that you can:
12. Take your ARVs correctly even if side effects begin to interfere with daily activities?
0 1 2 3 4 5 6 7 8 9 10
13. Integrate your ARVs into your daily routine?
0 1 2 3 4 5 6 7 8 9 10
14. Take your ARVs every day even if it means taking them in front of people who do not know you have HIV?
0 1 2 3 4 5 6 7 8 9 10
15. Take your ARVs even if your daily plans change e.g. if you have to go out of town?
0 1 2 3 4 5 6 7 8 9 10
16. Take your ARVs even if you are not feeling well?
0 1 2 3 4 5 6 7 8 9 10
17. Take your ARVs even if they interfere with (make you change?) your daily activities?
0 1 2 3 4 5 6 7 8 9 10
18. Take your ARVs even if you are feeling healthy and the test results (CD4 count) are good?
0 1 2 3 4 5 6 7 8 9 10
19. Take your ARVs even when you feel discouraged or are unhappy with your health?
0 1 2 3 4 5 6 7 8 9 10
20. Take your ARVs even if it is a problem to get to the clinic?
0 1 2 3 4 5 6 7 8 9 10
21. Take your ARVs even if your family or friends say the ARVs are not helping you?
0 1 2 3 4 5 6 7 8 9 10
22. Get something good out of carrying on taking your ARVs, even if they are not making you feel better?
0 1 2 3 4 5 6 7 8 9 10