Supporting young people living with HIV

If a young person does manage to make it past the challenges listed above they could still face issues at the point of access, including:

• stigma and judgement (being perceived in a negative way because of who they are or what they do)
• discrimination (being treated in a negative way because of who they are)
• fearmongering (being made to feel scared for their health and future)
• a lack of confidentiality and respect for their sensitive data
• being blamed for having HIV.

Many young people have told us about instances where they’ve experienced these issues. Below are a few examples of what they’ve had to deal with, and how it’s affected them.

“I went by a healthcare institution in Lusaka to inquire on HIV. The care giver who attended to me asked if I was/want to start sleeping around. Her response discouraged me from talking about HIV or condoms for fear of people thinking I'm sleeping around.”

Anaishe

“A counsellor made me hate counselling because she was judgmental. Instead of feeling better, I felt worse, empty and was even afraid to ask further questions. I never got any other counselling until I decided to counsel myself bit by bit. l guess one day I will be able to go through therapy to get over everything from that year. Never look down upon anyone you never know what harm it does.”

Dalia

“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

See more examples of real-life experiences that have put young people off accessing HIV services.

It’s important to ask yourself if you hold stigmatising views or if you’re prone to judging young people for their decisions regarding sex, their health and relationships. Don’t be hard on yourself if you realise you have done this before – becoming aware of these issues is the first step towards addressing them.

• Respect them and their privacy

Young people deserve respect and dignity like anyone else. Keep in mind that it can take a lot of courage to seek support or treatment, and that they’re doing a great thing by being proactive about their health. Be respectful of their privacy and confidentiality too.

• Don’t judge

Young people have sex – it’s normal behaviour. Young people will have elements of their life and identity that you don’t know about – including their sexuality, their opportunities and their circumstances. Do not judge them for being sexually active, for their sexuality or for showing an interest in sexual health issues. These are all normal and healthy parts of life. Remind them that your priority is to help them.

• Give them space

If a young person begins to tell you something regarding their health, give them time and listen. Don’t rush them or interrupt to ask irrelevant questions – this is damaging to the trust they could have in you and could hinder your efforts to help them. Be sure to give them room to ask their own questions too – it’s important they have a chance to ask for more information or clarity.

• Spread hope

Your tone and attitude can make all the difference to a young person. Staying calm and positive in difficult circumstances can help them come to a solution quicker, and that’s true for those with HIV too – being reminded that HIV can be managed and people can have a long and healthy life with the help of medication is important. This includes talking about  U=U as it can encourage people to adhere to their treatment. This stands for undetectable=untransmittable and refers to the fact that people with HIV who are on effective antiretroviral treatment, with an undetectable viral load, cannot pass on HIV through sex.

• Don’t assume

What you say can make a huge difference to how welcome and safe people feel. Never assume you know someone’s situation – for example, do not assume that a person is heterosexual, that a woman would want to become a mother at some point, or that a couple who are sexually active are married. These assumptions might seem minor but they can make people feel like they are being judged. If you need further information ask them respectfully and be ready to explain how that information would be relevant.

Here are some examples of things to say and what not to say to young people you’re supporting.

It’s normal to make mistakes along the way to becoming more mindful of what you say – if you do make a mistake, starting a conversation with a sincere apology can help to restore trust.

See our case studies for more detailed examples of good and bad practice when working with young people with HIV.

As part of caring for young people, it’s important to check in on their mental health. Living with HIV can be challenging mentally for people whether they’ve recently become aware of their status or if they’ve been taking medication for years. Ask them how they’ve been feeling mentally lately and if there’s anything they’d like to talk about – this can encourage them to open up about any worries they might have and give you a better understanding of their needs.

It’s worth being aware of local mental health services that you can signpost your clients to if they need more support. You can show them our page about mental health or tell them about a dedicated helpline or a local service – as long as they’re able to offer accurate, non-judgemental support and privacy.

Ask for feedback

To make sure that your service is helping young people feel supported and welcome, you can ask them to let you know what they think of the care they’ve received – while this might involve further effort, it can be valuable in highlighting the great things about your service and areas for improvement. It doesn’t need to be a complicated system – take a look at the scorecard on this leaflet for an idea of what you could do. Remember that the feedback is helpful to improve your services, so don’t feel bad if you receive negative feedback.

Make the service accessible to young people

There are simple changes that can make a big difference to whetheryoung people feel able and welcome to come to your service. Reviewing things like marketing materials can be a useful exercise. And doing research to find out  whether young people actually know your service is there can help you see if there’s something that could be improved to bring more young people in. For example, marketing your service to relevant youth groups or holding an after-school clinic can help increase uptake. Being clear about how you respect their privacy and confidentiality can also encourage young people to attend.

Ready to offer great support to young people? Take our quiz to test how much you know!