By Mamakiri Mulaudzi, Ebenneza Kofi Okyere-D, Peace Kiguwa, Janan J. Dietrich
You know how it can be super awkward to chat to someone about sex related things? Well the team at the PHRU (Perinatal HIV Research Unit) at Wits University has fixed that.
Imagine that you are 22-years-old and living in Soweto. Your parents probably don’t know that you are sexually active, they also don’t know about those shots you had with your friends at that party last weekend. Your boyfriend suggested that you try anal sex as a couple. He seems to think it would be safer that way – you can’t fall pregnant from anal sex, right? So that’s great! Also, your risk for HIV from anal sex must be lower as well, right? It just makes sense.
Except that now you have questions:
(1) Is anal sex really safer?
(2) What about anal sex with a condom? Can you even do that?
Would you ask your mom?
There are over 5.10 million South Africans with questions just like this (aged 18-34) in Gauteng alone. Where are these young people getting the answers they need? The HIV prevalence rate amongst young people in Soweto is as high as between 4% and 35%. But, the options for the youth are really limited. Their parents and immediate family are immediately disqualified from being asked intimate questions like this. Who does that leave? Nobody will queue at a clinic to ask a nurse, and your local social worker is out of the question as well. According to a study by Mulaudzi et al: “Lack of confidentiality in accessing HIV prevention services due to long waiting queues, and sharing facilities with adults and other health care services hinder access to HIV prevention and health care services”.
We dare you to go and ask your mom about anal sex .
It may be embarrassing but you may be lucky enough to have the kind of friends you can ask open honest questions to. If not, you are basically left to figure things out for yourself.
Bring on the robots
There is a need for HIV prevention methods that recognize diversity of young people’s sexualities and sexual preferences and the need for methods to tap into platforms that young people engage with in a non-intrusive way.
The 2019 international 9th SA AIDS conference in Durban was themed Unprecedented innovations and technologies: HIV and change (AVAC, 2019) and called for HIV prevention, treatment, care and management to become more robust, innovative and inclusive of all groups at risk of HIV infections. Young people in South Africa are among the groups at risk and in need of innovative and revolutionary methods.
Meet the Quick Questions Portal
Imagine a completely free, completely confidential system that is always available to answer your questions and point out your risk. In our study, “Developing a youth-friendly internet-enabled HIV Risk Calculator: preferences from young people aged 18-24 years, Soweto, South Africa” we held focus group discussions and in-depth interviews with a total of 40 young males and females aged 18-24 years.
Here’s what we found.
Young people prefer a discrete and private means to assess their own risk for HIV. They agreed that an app design and logo must not depict anything related to HIV.
Refiloe, an 18-year-old male, suggested any “HIV risk calculator” must be discrete, to maintain confidentiality. He said: “Yes when it [HIV Risk Calculator] appears on the home display, it shouldn’t have anything indicating what the app is about, it shouldn’t be obvious what the app is about. Only the user and the owner of the phone should know what the app is about”.
While some young people preferred a private and personalized tool to self-assess HIV risk, other participants were skeptical about using internet tools to furnish personal and sensitive information such as HIV status.
Kabelo, a 23-year-old male who identified as a client of sex workers, was only sure to use the HIV risk calculator if there was guarantee on privacy, he said “You see the internet stuff, like the ones that are connected to the internet, I don’t trust them. So if I was given like a guarantee that if you put your information here nobody else will open it. Maybe if you want to answer that thing [HIV Risk Calculator] and after you provided a password and you lock it down ah that way I will be honest 100% because I know that this will be known by me and that person [researcher].
Mpho, a 20-year-old male, was uncomfortable to furnish information about HIV status, stating that “I won’t be able to tick my HIV status and that of my partner. HIV results are private and is not something you go around writing everywhere.”
What we have learnt
Based on the discussion with young people, the HIV Risk Calculator has the potential to encourage honesty in the responses to HIV risk assessment questions. They preferred a self-administered rather than an interviewer-administered HIV risk assessment. Narratives acknowledged that participants provided incorrect responses about number of sexual partners, condom use and type of sex and sexual partner.
Ragnar shared that “To tell you the truth neh, I was partially honest [during HIV counselling] to tell someone that you had sex with a sex worker, ahh! That one is a difficult part. You can’t just say I had sex with a sex worker, joh! It’s easy to say I had a girl for a one-night stand.”
During female discussions, Emily confessed that “I can minus one or two [sexual partners]. If you don’t know that person, they are also people… they will judge you… inside they will be thinking this girl is a whore, so many partners. It’s not easy, you withhold information.”
Participants also shared that they prefer a tool that is interactive to allow them to ask for clarity on questions that they don’t understand and to ask further questions about their health and about nearest youth-friendly clinics for HIV testing. Gregory, an 18 year old, preferred an interactive tool, emphasizing that “you must change [it] because here it’s not interactive. It must at least tell people that, this thing does not mean you have HIV or not, it’s a Risk Calculator… it must tell you that to avoid being at risk, okay, condomise, decrease number of partners, you see? It must also tell you… to get tested, go to your nearest clinic and stuff like that.”
Portia, a 20-year-old female, suggested that the HIV risk calculator must have an option to provide notifications to remind young people to test for HIV on a regular basis. She said that “If it’s an app you get notifications to say I think you should assess your risk again if it’s been six months.”
Participants considered that the interactive aspect will allow young people to learn more about HIV risk and health related information. An 18-year-old, Remoneiloe suggested that “It is possible that in this app, they add a doctor (so that you can ask questions)? Maybe you, don’t feel satisfied by the questions.” This aspect will most likely address the problem of information fatigue to allow participants to take in information that they specifically ask for.
We considered feedback and recommendations from young males and females in adapting a youth-friendly internet enabled HIV Risk Calculator. There is a need to involve targeted users when developing mHealth apps for HIV prevention. Privacy and confidentiality are important features that may promote acceptability and willingness to use novel and internet-enabled HIV prevention tools. Young people in this study mentioned links to clinics or a doctor for more information. This is encouraging as it means there is openness towards accessing health care online.
Mrs Mamakiri Mulaudzi is a senior researcher at the Perinatal HIV Research Unit. She is a PhD candidate at the University of the Witwatersrand, Psychology Department.
Dr Kofi Okyere-Dede (MBChB) is a medical doctor and Co-founder at Novitech Digital and Dekode. He has extensive experience in HIV prevention research.
Prof Peace Kiguwa (PhD, Psychology) is a senior lecturer at the University of the Witwatersrand, department of psychology. She is co-editor in several scientific journals.
Dr Dietrich (PhD, Psychology) has 15 years’ experience designing and implementing social science methodologies with specific expertise in qualitative research. Dr Dietrich is the Director of Bio-Behavioural Research at the Perinatal HIV Research Unit (PHRU) and holds a research staff appointment at the University of the Witwatersrand, South Africa.
More than simply annoying or rude, ghosting can have genuine psychological and emotional effects as being left on read can have genuine effects on a person’s sense of self-worth and mental health.