One of the things I hear most often from clients is that HIV is an isolating disease. Some clients say they lack a strong support system, especially those who live in smaller rural communities. Often, I wish I could tell them they are not alone, that HIV exists in every community on this planet, but it is little consolation when others are too stigmatized to emerge and create those meaningful peer connections. That is perhaps one of the biggest challenges we face—how to help those living with HIV make meaningful connections with other positive people.
Since I began my career at NAP as an intern in 2014, I have had countless opportunities to mix academic scholarship with my daily work with those living with HIV. Every opportunity I could use NAP as a model for a course project, I leapt at the chance to provide awareness about what we do at Nebraska AIDS Project and to improve the quality of services we provide to those who need them. With this “work smarter, not harder” approach, it should come as no surprise that I spent over a year of my graduate program studying the effects of peer support on people living with HIV. It is one of my deepest passions—to advocate for programming that utilizes evidence-based approaches like peer support.
Peer support is an intervention strategy designed to increase adherence among HIV positive persons. These are different than support groups as peer support is designed for one-on-one audiences. Peer support models were initially designed to help those who struggle taking their medications and keeping their doctor appointments but has since been used in a variety of other areas of HIV care. Peer support is perhaps one of the most powerful and underused interventions we in public health have in our toolbox. And I would guess largely underused as so many AIDS Service Organizations have seen a decline in their positive peer volunteers and little capacity to offer a formalized training to those peer mentors.
Some of you may remember years ago when NAP had a “buddy program.” I am reminded of the buddy program often by our longtime clients who miss the relationships they had one on one. While the buddy program didn’t pair two positive people together, it did provide a key element that is often overlooked in doctor offices and exam rooms: identifying at least one person who could support them in their HIV health journey. Many clients remind me how much they loved having the one-on-one informal support that came from a volunteer, rather than a paid staff person. It is my hope that someday participants throughout our community will feel called to action to share their talents and gifts as HIV positive persons to help those in need of additional peer support. And that’s only one part of the hurdles we face to implement this needed programming. Much of the larger issue is the stigma and shame we’ve been working to eradicate since the beginning of HIV. And if anyone reading this has the solution for how to destroy stigma, I’m all ears.
Many HIV programs throughout the country recognize how important peer connections are in keeping those living with HIV healthy and engaged in care. There are designed curriculums to teach HIV positive peers how to mentor one another. Most programs rely on seasoned survivors to take newly diagnosed peers under their wing and accompany them to doctor visits, explain lab draws and results and educate them on the importance of taking medications every day. A physician will also provide this information, but as research has demonstrated, having this information explained by a peer has a much more impactful and lasting effect on that person’s health literacy.
For my final graduation research project, I chose to survey people living with HIV in Iowa and assess their interest in peer support. Overwhelmingly, I heard “Yes, I’d definitely be interested!” Perhaps one participant said it best: “I think peer support programs are critical to the stability and well-being of those living with HIV/AIDS.” I couldn’t agree more with him. Living with HIV provides a wealth of knowledge and experience that patients won’t find in a pamphlet or from watching a movie. The most powerful tool professionals can provide to those living with HIV is the power of peer connections and providing the opportunity to foster those relationships.
I would encourage you to take a moment out of your day and think about the peer support you have in your life, perhaps even send those peers a note of thanks for being a support to you. Maybe the tie that bonds you two together is not an HIV diagnosis, but knowing you have someone who understands what you’re going through and is there to lift you up and encourage you can make all the difference.
Brittany is a Southwest Iowa Case Manager for the Nebraska AIDS Project in Omaha, serving 11 counties in Southwest Iowa.