Profile of the participants - truckers
While some of the truckers were in long-distance travel across the country, movements of others were limited to the State of Maharashtra. All the IDI participants among truckers were married and belonged to the age group 21 to 67 year. While one of them was a science graduate, six had primary school level education, 4 had studied till 10th standard and the remaining 5 had completed 12th standard of school education. Each of the interviews lasted for 50-85 minutes. Each focus group with the truckers had 5 to 6 participants and most of the discussions persisted about an hour; the longest taking 1 hour and 40 minutes. The discussants belonged to the age group 21-55 year; most were married and the level of school education varied from 3rd to 12th standard.
Profile of the participants - youths
Majority of the women interviewees had secondary school education and some completed graduation. Among 13 young men, 3 did not have school education beyond higher secondary (12th standard) and four had completed graduation in different subjects such as arts, science and engineering. Five others were continuing graduate studies. Four GDs were held with young women (3 groups constituted by unmarried women and 1 by married women). Each of these GDs lasted for about 45 minutes and involved 5 to 6 participants. The discussants belonged to the age group 18-23 year.
Participating young men were unmarried; each of the five GDs with them persisted for about 65 minutes. The discussants belonged to the age group 18-23 year. Their level of school education varied from 10th standard to graduation. In – depth interviews with women persisted for 50 minutes to 1 hour, while interviews with men lasted for 30-50 minutes.
Prior HIV test experience
Majority of the truckers had undergone HIV test; some at ‘Khushi clinics’ - an initiative by the Transport Corporation of India Foundation aiming to reduce spread of HIV and other STIs among long distant truck drivers. Others took HIV test at government hospitals. While overall experience in the former setting was positive, hurdles were faced by some in government settings. ‘Apprehension of getting identified while seeking HIV test from public health facilities’ and ‘spread of such information within the groups of truckers’ were associated concerns.
All married women IDI-participants (during pregnancy) and 2 unmarried women had HIV test experience. A few women members in GDs had prior HIV test experience as well. Contrastingly, among the male participants, only one interviewee and 2 discussants reported experience of prior HIV test.
Difficulties faced by women during HIV test were of varying nature such as pain associated with needle prick during blood drawing, panic associated with the volume of blood drawn, fear of unknown as HIV test was undertaken for the first time and the hassle of detour from one department to another in the hospital. Negative attitude of some of the health care providers was another concern.
“That you know – take blood from finger, take blood from vein – I had much trouble – take a lot of blood – they remove blood until tears come in eyes …… I had never taken HIV test before delivery – but during pregnancy they took a blood sample… but then I was scared a bit”
Myths and Misconceptions around HIV
Interviews unravelled the range of mis-information truckers had on HIV transmission and treatment. Reportedly, a newspaper in Osmanabad (an administrative district in Marathwada region in the state of Maharashtra) published a story on an HIV infected individual getting cured following consumption of pesticides used on cotton plants. An incident of HIV cure by snake venom was narrated by another trucker.
Advantages of HIV oral self- test
Most of the truck drivers felt that HIVOST would benefit them and a few of them opined that availability of such a kit would lead to increased detection of infection and further linkages with anti-HIV treatment facilities. Vulnerability of the truck drivers to HIV and other diseases were highlighted during these sessions, and ‘confidentiality’ as well as ‘convenience of doing the test by self’ were perceived as merits of HIV self-test.
“The advantage is that if we have any information then we will implement…. If we have to walk on the road and we know the direction of the road then only we will reach… if we do not know the direction of the road then we will get lost … that is why I have interest in it”
“….as many drivers are there, they all will get benefit…actually, means driver line is such that people have to go outside for work …all these diseases happen mostly to driver people…mainly drivers are targeted… It (HIV self-test) will be useful for us … it will be very useful for those in this field”
HIV oral self-test (HIVOST) concept was greeted by most of the young adults during IDIs and GDs. Long queue, fear of getting identified by somebody known, stare from people, and fear of breach of confidentiality at HIV testing centres were the reasons cited by young men to welcome HIVOST. Some even indicated that HIVOST would enable one to take the test at home and highlighted the ease of using it.
“Because we can do it easily… because saliva is in our mouth, we can easily do the test, blood is in our body… we have to withdraw it. And some people are scared of blood that is why saliva is comfortable”
Advantage of using oral saliva-based test in children was highlighted by a married woman, while another woman elaborated upon hesitation to discuss HIV even with a doctor and highlighted the advantage of HIV self-test from such perspective. Women participants, without prior HIV test experience, reflected upon their social interactions and highlighted how HIVOST could be helpful. Situations cited by them encompassed young boys and girls contemplating sex, pre-marital HIV test and familial level disputes. Some of the young men mentioned that HIV self-test should be deployed in brothels and lodges before engaging in sex.
Specimen of choice
Saliva was preferred over blood by both the truck drivers and youths. ‘Ease of using saliva as test specimen’, ‘lack of knowledge on how to draw blood’, ‘quick results’, ‘ability to do the test by self’ and ‘fear associated with needle prick’ were cited advantages. Young women preferred HIVOST compared with the traditional blood-based HIV test conducted in laboratories or hospitals; a few of them did not express any preference for clinical specimen, and very few preferred blood over saliva.
In two of the group discussions with young men; rare viewpoints such as presence of HIV in the blood and unknown accuracy of saliva-based test were put forth as justification to choose blood over saliva. The other rare justifications were blood being internal (core) element of the body would capture the presence of the disease at an early stage and possibility of using the blood specimen taken for HIV test to conduct other investigations such as CD4 count.
Apprehensions around HIVOST
We grouped potential harms as perceived by the participants in three categories, a) societal, b) environmental and c) individual. None of the youths during IDIs or GDs flagged societal harm as an issue that could arise following introduction of HIVOST. A few though talked about judgmental attitude of the society towards HIV.
“Means, as now what I said as the logo is very famous (HIV logo in the form of a red ribbon) because where ever HIV word come … at that place, this ribbon comes ..., so basically this logo belongs to this (HIV). So may be someone notice this, so the person in front quickly start to think that person has done something. So, he needs this product. Sometime people do not think, that why are you doing this – Means when a person sees something in front of him, so he quickly starts to think about it and start thinking about it in his mind”
“If we share about it with friends that I have such and such problem... even he is very close to us, he may have friends to whom he can tell ... that your HIV test result is so and so... then people start looking at you in a different way. And due to this fear, one cannot talk about it (test) or one avoids to take this test”
Possibility of getting into depression leading to self-harm or reluctance to seeking treatment following positive HIV result were apprehensions raised by some of the youths. Anxiety related to HIV positive test result was obvious through the responses of a few truckers; another viewed HIV positive test result as something like the end of the world. These were not specific to HIVOST though.
They will be demoralized as soon as they get to know … first and foremost they would get demoralized. Sometimes, they would say that they don’t even want the tablets … since now, I have got the disease … I don’t need to take the tablets … it’s better to die … if society comes to know about it tomorrow that I have got this … then who do I face … what would I tell people at home”
-Isa, 47 year(TR05)
Young men also brought up issues such as ‘leakage of information’ and ‘forced testing during marital negotiation’. ‘Accuracy of HIVOST result’ was another concern raised by men and women participants. Very few participants expressed that pranks could be played with HIV self-test.
“……if I want to get someone into trouble – if I want to demoralize someone I will do someone’s HIV test… one who is HIV positive and push it on you… and say you are HIV positive... then in your mind you’ll have doubts about HIV - you will be demoralized a little bit – the freshness that you had or that you were so free – you will not remain that free – in your mind there will be continuous worry”
A few youths were concerned about safe disposal of the test kits, failing which could result in environmental pollution.
““Little bit it will affect the environment, and also pollution will take place – because we throw it in the garbage – basically there is not one as such – if you go to their work place and see that they set it on fire, and from that air pollution is caused, so that one thing will”
-Shpa, 23 year (YG04)
A few truckers were also concerned about disposal of test kits vis-à-vis environmental pollution. Inappropriately disposed self-test kits in the garbage was seen by another truck driver as an issue concerning others’ health. A rare point of view was raised pertaining to the fluid (reagent) in the tube that comes with the HIVOST-kit, by a truck driver from Punjab. He mentioned that the fluid could be used for injections by drug users while, a young participant assumed that the fluid might contain acid and could be poured on to someone to cause harm.
Kit Considerations
Participants were shown various components of the HIV self-test kit and the package insert with pictorial diagrams on ‘how-to-do’ steps. The following domains pertaining to the kit were explored; a) packaging, b) instruction leaflet, c) kit outlet, d) cost consideration, and e) information to go with the kit (table 1). A few of the youths expressed that the kit should have been smaller in size for carriage convenience. Most of the participants wished to see HIV symbol on the kit. It was further suggested that the instructions should be presented in local language for easy comprehension.
Table 1 : KIT CONSIDERATIONS
DOMAINS
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QUOTATIONS
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PACKAGING
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“Kit looks a little big, sir ... It should be a little small ... one that can easily fit in the pocket”
-A truck driver from group discussion
(GD- TR 04)
Name is written means - name should be written only. For what it is -it should be known only”
- Prik, 23 year(YB11)
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HOW TO DO IT - INFORMATION
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“I would like to know if someone explains. But if pictures are displayed in a different way then it’s okay.If it is shown in hospitals how to do it, it would be much better. If explained in local Marathi language then it would be of benefit”
- Igat, 45 year (TR11)
“As you can see in “Save the girl child and educate her (Beti bachao,Beti Padhao) ….on the television… in the same way it (HIV self-test) also happen… it should happen for this (HIVOST). That means every home...it should be known that there is such kind of thing is there. While sitting at home you can check / test. For this more advertisement should be made”
- Shpa, 23 year (YG04)
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ACCESS POINTS
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“It should be available everywhere – at Dhaba, at Pan Stall. It should be made available in the hospitals and even at your office – your department – It should be available in all these places”
- Diar, 43 year, (TR12)
“Even at schools and colleges – as youths must be aware - It is very good for young people. They should be aware of such things”
- Prla, 23 year,(YG11)
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COST
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“If it is kept for free then it would not be so much – people would not understand its importance – so at least some price should be kept”
- Nene, 28 year(TR07)
“If free, the one who is in need will take it and the one who does not need it will also take it.”
-A young boy from group discussion
(GD-YB03)
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Most of the youths considered taking HIVOST at home or in the bedroom as appropriate, so that privacy was maintained, while truckers preferred taking it at ‘Khushi clinics’ or in the vehicle. Easy availability of the kits at various halt points such as ‘toll nakas’ and ‘dhabas’, were the felt needs of the truck drivers and youths recommended making kits available at schools and colleges. Wastage and mischievous use of kits, when made available free of cost, were the apprehensions of the youths and truck drivers. The suggested cost for a kit ranged from INR 10 to INR 400.