Building an effective HIV youth support group


By: Jennifer McMillen Smith, MSSA, LISW-S, Division of Infectious Disease and medically reviewed by Ann Avery, Infectious Disease Physician at Metrohealth Medical Center

You might think that living with HIV affects everyone the same, regardless of how old you are. But at each stage of growth, there is a difference in the support needed. In this blog, we’ll explain why we divide our young ones into their own HIV youth support group and put an age limit on our downloadable app.

The age-old question: Why the age limit?

Why not support everyone living with HIV in one big, happy support group?

Reason: peeps of a feather flock together. It’s that simple. Throw a couple of 20 and 30-year-olds into a 50-and-over party and watch how everyone naturally starts gravitating to each other by age.

And there’s a good reason for that! While HIV might be a universal experience for those in our support groups, it isn’t the only thing members have in common. Folks need to chirp and chat about everyday issues, too.

For teenagers, that means dating, school, friends, and family problems. For young adults, there’s a more significant focus on money, employment, long-term relationships, and beginning a family. Older adults are more focused on health. Of course, there’s still a fair amount of talk about sex and drama in all age groups!

Every age group has a different priority for their meetings. And if those meetings are going to be successful, the group must gel.

The Generational Gap

There’s a radical difference in how different generations perceive HIV. Someone in their 50s would’ve been alive when HIV was practically a death sentence. Many will share stories of lost friends and loved ones, and some still grapple with the reality of HIV being a treatable condition.

But it’s an entirely different story for the younger generation. This group grew up with HIV as a manageable chronic illness. Ultimately, the drugs that are so effective at treating HIV have also completely changed the tone of an HIV youth support group.

Our society has become much more accepting of LGBTQ+ identities over the past few decades. The older generation lived through a period when having a LGBTQ+ support group wasn’t even possible. Today, a 20-year-old would question if an LGBTQ+ group was missing. Younger people are more comfortable talking about sex and strive for a culture of inclusivity. Those things didn’t always exist for previous generations. For young folks, today's progressive culture leads to greater acceptance from family and friends; it also means that identifying as LGBTQ+ is very different between age groups.


Digital connectivity is a young person’s game

Then there’s the digital literacy issue.

While Gen Z and Millennials grew up with modern technology, older adults might struggle with downloading apps, joining Zoom calls, or staying up to date on the newest tech trends. Support groups for this generation sometimes include introductory courses to help set up devices and teach the essentials of modern technology.

On the other hand, teens and young adults have had the internet in their back pockets practically since birth. They're able to form relationships over a device with ease. Resources like our Positive Peers app are immediately a natural fit. Such resources aren't as helpful to older generations since they didn't grow up with digital friends.


Digital literacy

Young people are far more likely to look things up online, which is productive when it helps alleviate stress, reduce self-stigma, and promote self-care. Getting the correct information is also key to advocating for oneself when visiting the doctor. But sometimes, there are pitfalls and horror stories of people finding the wrong information and trying to treat HIV with home remedies. (Don’t even. Just don’t. No!)

An HIV youth support group provides access to high-quality resources and information, supervised by healthcare professionals and trained facilitators. It’s a great way to reduce misinformation! For good measure, the content posted to the Positive Peers blog, our app, and all social platforms, are vetted by clinicians. Establishing a group where young people can share what they've learned online and discuss with a professional nearby is excellent for their mental health. It can positively affect their physical health as well.

Positive peer pressure works in an HIV youth support group

Remember how when you were young, you’d sometimes feel invincible? That feeling often exists for teenagers living with an HIV diagnosis, too. Feeling invincible can be detrimental when it overtakes logic and stops individuals from taking their meds. This situation is frustrating for the care team, who is desperately working to motivate teens to take care of their bodies. Luckily, adherence is a frequent topic in an HIV youth support group, and the pressure to do right by one’s health and take meds comes from the group; peers, not authority figures.

While most people living with HIV are great at taking their meds, a few will flat-out reject them. In the case of those who acquired HIV vertically from their parent during pregnancy and birth, caregivers find that these individuals can struggle with medication adherence. Many of these people are younger and didn't get a chance to process an HIV diagnosis physically and mentally at a more mature point in their lives. It can be shocking and overwhelming for kids or young teens to learn that they-- and a parent-- are HIV positive. Still, there are great ways to support these individuals, which often come from their peers, in a support group.

Generally, those who acquired HIV in their teenage or young adult years are pretty good at taking their meds. At this point in their life, they can advocate for themselves and are determined to help others in a support group. Their diagnosis often comes when they are young adults, and the invincible teenager phase is behind them. They can share stories with their peers about what happens when you don't take your meds and offer to help find ways to adhere to treatment. It's one of the reasons why an HIV youth support group is so powerful; it connects young people who are going through the same thing simultaneously, regardless of how they got HIV, and everyone benefits in the end.

Keeping up with the lingo

The younger generation tends to be far more active online, and the more they interact with an app like Positive Peers, the more comfortable they tend to be with all the medical lingo. (Seroconversion, CD4 count, viral load, t-cells, opportunistic infections, undetectable=untransmittable, the list goes on.) It’s a huge learning curve, and many don’t know these terms until being diagnosed with HIV.

Health literacy is an area where all generations have a definite overlap, and there are times when bringing youth and adult support groups together is a fantastic way to share experiences and wisdom. But at the end of the day, creating support groups for specific age ranges is our preferred method, ensuring participants connect and communicate in the most beneficial way.

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