Description of the study area

This study took place from April 2018 to March 2019 in Ekurhuleni, a peri-urban area of the Gauteng Province, South Africa. Recruitment took place in the community, at school or college events; door-to-door community recruitment and at public health clinics. Potential participants were individually invited to take part in the study. Interested participants gave contact information to the research staff that included names and phone numbers.

Study design

This was a qualitative study where participants were invited to take part in an in-depth interview (IDI) or focus group discussion (FGD) to understand preferences for HIV testing. For IDIs, participants with unknown HIV status were eligible (had not undergone HIV testing), while those who tested for HIV previously were invited to be part of the FGDs. Locator information was recorded and used to telephonically contact participants to schedule appointments at a time that was convenient for them. In South Africa, research participants <18 years do not provide written informed consent. Participants aged 15–17 years old were eligible if they agreed to sign the assent form; their parent or legal guardian agreed to provide parental consent; showed proof of valid identification; agreed to be interviewed with digital recording of the session; and were able to communicate in one of the study languages. Participants aged 18–24 years were eligible if they provided written informed consent to participate; showed proof of valid identification; agreed to be interviewed with digital recording of the session, and were able to communicate in one of the study languages. Illiterate participants provided a thumbprint to acknowledge understanding in the presence of a witness. Participants were either interviewed or participated in an FGD once.

In order to assess saturation, a method for ensuring that the themes that emerged from the transcripts started to recur, so no new information was being identified. A preliminary analysis was conducted on 12 IDIs and one FGD. We noticed that the themes on types of incentives to encourage HIV testing started to recur thus saturation was reached. However, reasons for selecting a specific type of incentive needed to be explored further. Probes were revised, research assistants re-trained and detailed probing implemented for the remaining IDIs and FGDs. Based on the number of interviews and FGDs conducted and revision of probes to fully describe themes, saturation was reached by observing recurrence in themes from all transcripts. The authors (CMC and TM) qualitatively assessed the transcripts for saturation and when no new themes emerged from the transcripts we deemed that saturation was reached [20].

Data collection

We invited 28 participants for the IDI and excluded three (10.7%) due to them reporting at enrolment that they previously tested for HIV. Twenty-five males and females aged between 15–24 years that had never tested for HIV were interviewed. Each IDI lasted approximately 45 minutes to an hour. A summary of demographics (Table 1) of the IDI participants that took part is shown. We conducted four FGDs with a total of 18 males and females with history of HIV testing, where participants were divided according to two age categories (15–17 years and 18–24 years). Each FGD took approximately 1–2 hours long per session. The IDI (Table 2) and FGD (Table 3) guides explored the types of incentives that youth would value when testing for HIV or receiving treatment; barriers and motivators to HIV testing; enablers and challenges to using cell phone technology and preferences on type of social media to be used to create awareness about HIV testing services. Interviews were conducted by two males and one female; all interviewers had prior experience on qualitative data collection and were trained for purposes of the study. The interviewers were young adults who were able to identify with the participants and speak local languages used during interviews. IDIs and FGDs were conducted in preferred languages of participants, which were either English, isiZulu, Setswana, or Sepedi.

Table 1

Demographic characteristics of participants in in-depth interviews.

		Total		Males		Females
		n = 25	%	n = 11	%	n = 14	%
Age category	15–17 years	11	44.0	5	45.5	6	42.9
	18–24 years	14	56.0	6	54.5	8	57.1
Education	High school	23	92.0	9	81.8	14	100.0
	Tertiary	2	8.0	2	18.2	0	0.0
Currently Employed	Yes	1	4.0	1	9.1	0	0.0
	No	24	96.0	10	90.9	14	100.0
In a relationship	Yes	12	48.0	6	54.5	6	42.9
	No	13	52.0	5	45.5	8	57.1
Currently sexually active	Yes	13	52.0	6	54.5	7	50.0
	No	12	48.0	5	45.5	7	50.0
Access to cellphone	Yes	16	64.0	6	54.5	10	71.4
	No	9	36.0	5	45.5	4	28.6

Table 2

In-depth interview guide.

Part 1: Structured questionnaire

1. What is your gender?

2. How old are you?

3. What is your educational status?

4. Are you employed?

5. What is the name of the public health clinic that you attend?

6. How far is the clinic from your home?

7. Are you currently in a relationship? If yes, how long have you been in a relationship?

8. Are you sexually active?

9. Do you know your HIV status?

10. Do you have a cellphone?

Part 2: In-depth Interview

1. Please describe to me your thoughts on HIV?

a) How can you become infected with HIV?

b) Tell me about what places a person at risk for HIV?

c) Can you tell me about any situation when you felt that you may have been at risk for HIV?

2. Can you tell me about the HIV testing services that take place in your community?

a) Where are the HIV testing services for youth usually delivered?

b) Can you tell me about your experience accessing these services?

c) In your opinion what is positive about the current HIV testing services that are available to youth?

d) In your opinion what are negative aspects of the current HIV testing services that are available to youth?

3. How do you think incentives could be used to encourage youth to test for HIV and access treatment?

a) What is your understanding of incentives?

b) Please describe the types of incentives that youth value which could encourage them to test for HIV or access treatment?

c) How often do you think these incentives for HIV testing services should be provided?

d) What could be the challenges of providing these incentives for HIV testing services?

e) What would be the benefits of providing these incentives for HIV testing services?

4. Please describe to me your thoughts about being contacted via telephone or social media for HIV testing services?

a) Can you please describe some examples of how you have been informed about HIV testing services?

b) How would you feel about being informed and registering for HIV testing services using your cellphone?

c) How could cellphones be used to inform youth of HIV testing services?

d) Please describe any challenges that youth might experience if they are contacted on their cellphone for HIV testing services.

e) Please describe the benefits of contacting youth on their cellphones for HIV testing services

f) In your opinion what types of other social media should be used to contact youth for HIV testing?

g) What are the challenges for using social media to contact youth for HIV testing services?

h) What would be the benefits of using social media to contact youth for HIV testing services?

i) How do you think your parents/legal guardians would feel about you receiving information on HIV testing on your cellphone or social media?

5. Can you tell me about any other suggestions that you may have which would encourage youth to test for HIV?

Table 3

Focus group discussion guide.

1. Please describe your positive and negative experiences of being tested for HIV at an adolescent friendly clinic

2. Tell us about suggestions that you may have on how to improve HIV testing services at adolescent friendly clinics

3. How do you think we should inform youth about HIV testing and treatment?

4. Can you tell us what measures we could put in place to encourage youth to test for HIV?

5. What do you think about providing incentives to young people to access HIV testing services?

6. Please describe types of incentives that young people would value when testing for HIV or receiving treatment

7. Please tell us about the benefits and barriers to use of incentives for HIV testing services

8. How would you feel about being informed and registering for HIV testing services using your cellphone?

9. How could cellphones be used to inform youth of HIV testing services?

10. Describe the positive and negative of using cellphone technology when contacting adolescents or young adults for HIV testing and treatment

11. In your opinion, please tell us what type of social media should be used to inform adolescents or young adults about HIV testing services

12. In your opinion, how would your parent/legal guardian feel about you receiving information on HIV testing services on your cellphone or social media?

13. Can you tell us about other suggestions that you may have on how we could encourage youth to speak honestly about their sexual behaviours?

14. Are there any final thoughts you have about youth, accessing HIV testing services or the use of incentives?

Only the interviewer and the participant were present during the in-depth interview session. For FGDs, an interviewer, note taker and participants were present during each session. Research staff were trained to be objective during all contact with participants. All participants were reimbursed approximately $15 (ZAR150.00) to compensate them for their time and travel.

Data analysis

All transcripts were anonymised for confidentiality (S1 File). IDIs and FGDs were transcribed verbatim, and translated into English where applicable. Most transcriptions and translations were outsourced to master’s level students based in South Africa who transcribed the digital recordings to the local language and then back-translated into English. Authors (CMC, TM and WM) quality checked the transcriptions. All transcripts were coded and analysed in English. Digital recordings were reviewed during the analysis. QSR NVIVO 10 was used for the analysis. Thematic analysis uses deductive and inductive approaches were used to develop the themes [20]. An iterative approach was used to develop the codebook and index the transcripts from which categories, themes and patterns developed from the data as a standard component of qualitative analysis in which codes are developed and then applied to transcripts for indexing related text for use in thematic analysis. Authors with doctorate level (CMC) and master’s levels (WM, TM) qualifications developed the coding scheme using the English transcripts. For reliability, the original transcript and codes were sent to independent reviewers. The independent reviewers (CJH, CB, SC) were part of the investigator team with medical and doctorate level qualifications. The codebook was discussed at a round table meeting where new codes were suggested [12] Initially our broad coding included categories of HIV testing Services and Incentives. During our first review, cell phones and HIV information sharing codes were later added because more information developed from transcripts. The authors agreed to particular codes such as HIV testing services, incentives, cell phones, and HIV information sharing. Codes that lacked intercoder reliability were dropped from the analysis [21]. For example, we moved sub-categories of parental perceived opposition and parental perceived support from the HIV testing code to another main code labelled as parental roles due to strong patterns that developed related specific to parental support. For the parent code of incentives, we removed games and Youtube as sub-categories, as trends related to these did not develop during review of the transcripts. The codebook was revised by authors (CMC and TM) and the themes finalised which are displayed as direct quotes [20, 22]. Participants did not provide feedback on the findings. The COREQ checklist (S2 File) which guided the data collection and data analysis process is attached.

Ethics statement

Approval was obtained from the University of the Witwatersrand Human Research Ethics Committee (180203) and from the Gauteng Province Ekurhuleni health district (GP_201804_010). Ethics approval was granted to use direct quotes for reporting.

Main theme 1: Perception of low risk to HIV infection

Most youth felt that being young, absence of physical signs of HIV, being sexually inactive and having parents not being HIV positive placed them at low risk of HIV infection. Perception of low risk to HIV infection was similar across the attributes of age and gender. It was mostly those with unknown HIV status who felt that they were at low risk to HIV.

“…because I do not sleep with girls. I am still very young….”

(Male, 15 years, IDI)

“I thought that it was not my time cause like I was very, too young.”

(Female, 15years, IDI)

“… They ask what makes you test, what do you know at such a young age?”

(Female, 18years, IDI)

For some youth, absence of physical signs of HIV convinced them that their risk to HIV infection was low.

“Uhh {what makes me think that I didn’t get infected} is because I didn’t have the symptoms {of HIV}.”

(Male, 18years, IDI)

“I have never tested for HIV because I have never encountered danger like to go to test…Like changes to my body like maybe sores around my body…”

(Female, 18years, IDI)

Others perceived they were at low risk to HIV infection as a result of being sexually inactive.

“…The thing is I have never been intimate with a boy; yea I have never had sex.”

(Female, 15years, IDI)

“… if a person or youth does not… is not sexually active they don’t think it is necessary for them to go and test they just think cause I am not having sex they just sit and not go to test.”

(Female, 18years, FGD)

Another reason for perception of low risk to HIV infection highlighted by the participants was the assumption that their own parents were HIV negative.

“I don’t remember my mother going to the clinic to get treatment or my dad. I don’t remember so I doubt there is a way that I could be HIV positive.”

(Female, 15years, IDI)

“… Yes so; they would say that maybe because their mothers don’t have it that means they also don’t because others say, you get it from your mother.”

(Male, 15years, IDI)

Main theme 2: Behaviours related to susceptibility and HIV risk exposure

Although the perception of the youth’s own risk of HIV was low, youth still felt susceptible to being infected with HIV. There are different ways that youth exposed themselves to behaviours that made them vulnerable to HIV infection. These reported behaviours included high risk sexual behaviour and being victims of sexual abuse. Majority of the youth felt that unprotected sex, multiple partners, excessive drinking of alcohol and substance use were high risk behaviours that placed them at high risk of getting infected with HIV. There were gender differences reported for sexual violence where only females across ages spoke about their experiences of abuse.

Engaging in unprotected sex was one of the behaviours that placed youth at high risk of HIV infection.

“Oh. Ah. I was having unsafe sex. So, the condom…like I was using the condom but it burst …”

(Male, 18years, IDI)

“… the first time that I tested was …2015 because I didn’t use a condom so I wanted to know my status.”

(Female, 18years, FGD)

Youth felt being involved with multiple partners, excessive drinking of alcohol and possibility of being sexually abused placed them at high risk of getting infected with HIV.

“…Ok like if they give us alcohol by the time I get to the corner I will be drunk and I meet people that want to go to {XXX} (Name of place), then I will go every other place and I will wake up undressed the next morning. Not knowing how many people I slept with, am I HIV positive, I am pregnant I don’t know the father of the baby I don’t even know how I got to where I am cause of alcohol.”

(Female, 15years, FGD)

“Because the people there would have drank alcohol and they would be drunk. And when they want to have sex…they would not be thinking straight because they are not in their right mindset.”

(Male, 15years, IDI)

“…when we are drunk we lose 60% of our right brain we just think random things…”

(Female, 18years, FGD)

Other youth cited drug users as being at high risk of HIV infection due to excessive use of certain drugs and sharing of needles.

“… most people use drugs like nyaope (an opioid) and now it’s taken in different ways, some inject it. They inject it through they don’t know where this injection has been or who has used, they use it without information because they just want to use it. Even those people will need help.”

(Male, 18years, FGD)

A parent that frequently tested for HIV was suspected of having HIV, which some youth saw as a gauge for their own risk or HIV status.

“Yoh! The way I saw my mom always testing. So, I also thought that I have HIV. Always, she was checking and telling us how it went, when coming back.”

(Female,15years, IDI)

Other youth reported being victims of sexual abuse placed them at high risk of being infected with HIV.

“… I was drunk, so I was with my friend we were at and we went to party. So there came these guys, they had a car so we went with them to the party then they took us to their place. …And then that day I don’t know what happened, I just found myself sleeping on a bed, but when I touched myself, I felt like I was not good and then, maybe someone raped me or something.”

(Female, 18years, IDI)

“… I was in grade 12 2015, it was Sunday and I got raped by a person, that person that I trusted, he was like a brother and an uncle to me, but that time he had changed and I did not know what was happening with him. The worst part is that my parents didn’t know where I had gone to so I was afraid to tell them what had happened…”

(Female, 18years, IDI)

Others felt that suffering physical abuse such as stabbing or being involved in physical fight made youth susceptible to high risk of HIV infection.

“…maybe when someone got injured, having been stabbed with a bottle and you have a wound as well. If the blood gets into your wound, you can be infected as well.”

(Male, 15years, IDI)

Main theme 3: Cues to action for HIV testing

Some of the cues to action that would encourage youth to test for HIV were support of parents, receiving incentives and improved confidentiality during the HIV testing process. All youth across gender and age attributes responded positively to the possibility of incentives.

“…So at least at home if they tell you that you are positive, your mum will be there and accept your status…”

(Female, 15years, IDI)

“I think parents seeing those messages on child’s phone will also pressurise them to encourage children of theirs to go to test yea. So me as a mother seeing that there is this message popping up on my child’s phone meaning that this message is important so I must also put something adding to that message. So it will also encourage parents to encourage their children to go test.”

(Female, 18years, FGD)

Most youth felt that receiving incentives would encourage them to access HIV testing services.

“I think giving youth incentives …will encourage them cause uumh our youth are being encouraged by just small things so if we are given something’s like hats, caps, t-shirts or bottles that will, they will go all over telling other youth that we got this and that so when you go testing you get this and that. So lot of youth will go there in order to get what other people got after getting tested”

(Female, 18years, FGD)

“…So if they go to the university and say after you test we will give you study guides or we will give you textbooks obviously cause I don’t have textbooks but not because I want to know my status but because I will get textbooks so that I can get education.”

(Female, 15years, FGD)

“Maybe around R50 or R100, people can come. If maybe they say when you test you get food, they’ll come cause they like food too much…”

(Female, 15years, IDI)

“… a voucher will help cause the youth likes money, Ummh a voucher to buy food, or just money.”

(Male, 18years, FGD)

Some participants expressed a need for improved confidentiality during the HIV testing procedure.

“… some of youth are afraid of the clinic cause of that some nurses are, don’t know how can I put it, but they just tell everyone and shout. You see that one that came here and walked. He or she is pregnant, I mean HIV AIDS and stuff, so we need some confidentiality sometimes.”

(Female, 18years, FGD).

“… another thing is… find a place where you know for sure that, your confidentiality won’t be revealed.”

(Female, 18years, IDI)

Some youth reflected on negative experiences at the clinic and seemed to prefer HIV self-testing and testing at home either in private or possibly supported by a healthcare worker.

“… I think it would be better if I do testing on my own because I will be having my own little privacy and I will be the one who will know if I’m sick or not.”

(Male, 15years, FGD)

“… I think that the idea of using machine for testing it will be good and also incorporating it into our home so that we can have privacy while testing.”

(Male, 15years, FGD)

“…it will work because the point of door to door campaigns the nurses or whatsoever can come bringing information and if you are already infected giving you treatment at home you feel more comfortable. Someone maybe scared to be going to a clinic often to receive treatment, at the clinic you see there is no privacy yea I think door to door campaigns will play a role”

(Male, 18years, FGD)