Young people are at high risk of HIV infection and represent a growing share of people living with HIV worldwide, but unfriendly clinics can push them away from seeking prevention and treatment.
Below Joyce and Kudakwashe, as well as Luann Hatane, Executive Director of Paediatrics Adolescents Treatment Africa (PATA), give advice and insights to help providers improve their HIV services.
What stops young people going to sexual health clinics?
Here are some of the biggest issues that prevent young people seeking healthcare.
Young people are often met with a lot of questions and judgement when they try to access sexual and reproductive health services. This causes shame and prevents young people seeking the services they need.
Luann says: “Young people often report getting scolded for seeking access to sexual health services. In most cases, within their own communities, the nursing staff will question them and impose their individual morals and opinions – leaving the young person embarrassed and reluctant to seek services in the future.. In such instances the health service doesn’t feel like a safe, friendly or welcoming place for young people.”
Joyce says: “I go to one of the best facilities in my country, but I still feel they infringe on my space. I'm supposed to go to the hospital once every three months, but I go sometimes once a year because I'm trying to avoid questions and comments like, ‘So, where is your boyfriend? Is he also living with HIV? You should bring him for testing. You should bring him for counselling. Oh, now your viral suppression is OK. You should get pregnant and such things’. They mean well, but I can’t take it.”
Joyce says: “The number one thing that stops young people seeking HIV prevention services is HIV related stigma. I think it goes without saying, that the moment someone sees you walking into an HIV testing facility, it means either you are suspecting that you might have engaged in some risky behaviour or you don't trust your partner or something like that.”
Luann says: “We also know that in our region, we still have punitive laws, with certain services not being available to young people. Even in a country like mine, we might have good legislation that protects the right to comprehensive services but in practice legislation does not change attitudes. So the challenge for young people from key populations, or any young people, in accessing sexual reproductive health is that they are still met with a high degree of stigma, and unnecessary questioning and judgement.”
Joyce says: “There's still many populations that are stigmatised and are criminalised. For example those young people who inject drugs, those who sell sex and men who have sex with men. Many young people are somehow denied services or are afraid to seek services because they are not offered in a youth friendly manner and they do not have regard or respect for their diverse identities.”
When it comes to testing for HIV, many young people don’t really see the need or they are just too scared to find out their status.
Joyce says: “There is a saying that if you constantly test then one day you'll find whatever it is you're looking for. So ignorance is bliss. Unless you're sick, young people don’t usually bother to test. Or unless you want to settle down.”
Kudakwashe says: “Fear of the unknown is something that stops young people taking up HIV services. Like young people have difficulties accepting reality and just maybe knowing that they were born negative, now they are actually HIV positive. It's something hard for young people to accept.”
Luann says: “Sadly, its been reported that health providers can make fun of people and can be quite derogatory and judgemental in their communication. There have also been shocking examples from young people where health providers threaten to go to their caregiver or their mother. This is not creating a safe place and sadly breaks down the spirit of a young person who is already feeling quite isolated and has come for support and advice. “This is tantamount to human rights abuse and sadly the opportunity the health provider has to encourage and praise positive health seeking behaviour is lost.”
How can HIV services be more friendly?
When HIV services are friendly, more young people will come. Here are some tips to improve services.
Kukakwashe says: “Everybody should be friendly to young people when they just step into health institutions. Staff should be smiling in an open way whereby you don't have to face mean faces or mean attitudes. Maybe, just maybe, we might then have a breakthrough and young people might start being happy to go to the health institutes.”
Luann says: “I've worked in many health facilities, and as health providers we must acknowledge that we don’t have all the answers and that young people are in charge of their health. We have the opportunity to create a different environment, one that is welcoming and encourages young people to ask questions and have them answered in a way that is factual, and is free from our judgement. I know this can be hard for health providers who are part of the community and share local culture, and or religious beliefs for example. I appreciate that. But at the same time as a health practitioner, we also take a particular oath, to provide services in a way that is respectful, confidential, and caring and that is in the interests of a person's health and well-being at all times.”
Provide safe spaces where young people know they can come if they want to talk, without fear of judgement.
Joyce says: “Create a space for young people to come to talk when they are ready, instead of being forced into conversation during clinic visits. Young people should have an opportunity to talk about issues of medication, HIV, the pill, so they also need to know that they need to know that they should not be shouting at at at young people because they've decided to go on a drug holiday or they're experiencing drug fate.
Kudakwashe says: “Elders, including nurses, don't want young people engaging in sexual activities or stuff, but it's happening. The more they try to run away from reality and force young people to abstain the more problems it causes. They should just embrace it. Because there are a lot of young people who are like, I don't even care, I will just just die. Maybe it's better that way than to get bad treatment.
“But if they can be constructive and motivate us to play safe and you know, get check-ups regularly so that we may spread the word and just tell our friends about it. Maybe then we can have a lot of young people HIV testing, because there are a lot of young people, actually that don't know their status.”
Understand that young people are not a homogenous group, they have different needs and like different approaches to their care.
Joyce says: “Currently we have peer educators in most facilities and that is a good thing. But also some young people do not like to be handled by young people because young people sometimes talk and they prefer to be handled by someone who is a bit older and looks a little bit more professional. So I would say that each young person is unique and healthcare workers hould not try to handle young people with the same old script. I'm a different person than the person I was when I was starting care. Then I was happy to have a lot of handholding. But now I just want to take my medicine and not be reminded all the time that I am living with HIV.”
Kudakwashe says: “The questioning has to just go. If young people want HIV testing, they should be offered that service without a lot of troubling questions, like why would you want an HIV test and stuff. They should just treat young people with the same respect of being a patient as everyone else. Treat us equally.”
Examples of poor treatment at HIV services
Here are some examples of when young people have been treated poorly at HIV services. By hearing their personal experiences, you can learn how to improve your services. We have kept these experiences anonymous to protect people’s privacy.
“There was a time when I was first new to getting care. We used to be given tea at the facility and the cups would be washed afterwards, but the doctors would still not use the same cups. So that's one of the reasons I stopped going to support groups. Because they are aware that you can't transmit HIV that way, and it's human, I guess, but I don't understand why they did that, yet they used to do that very many times in our faces. So that was one case of stigma.”
“They can't tell you what it feels like to live with HIV. They don't know. Yet they would advise you to go out there and disclose your status to your boyfriend, for example, or to your partner even if it is something that you are not ready for – but they insist they want this partner to come to the facility. I would say they just haven't walked a mile in your shoes.”
“Sometimes you're facing some issues or challenges with taking your treatment and at times I’ve defaulted. Then the clinic staff have spoken very harsh words to me without really understanding that taking many pills in a day. It's not easy. So this is something that made me think, you keep to your space and I’ll keep to mine.”
“When I was 17 I went for an HIV test and I was forced to wait a long time while they treated older people who had arrived after me. Then when I was finally seen it was like an interrogation interview. I was asked, What are you trying to do with your age? What are you doing? Why do you need an HIV test and that is like a big turn off for young people, that's the other reason we are scared of going to the clinic.”
Do you know of any resources to help healthcare workers make HIV services more friendly to young people? Let us know by getting in touch at: firstname.lastname@example.org