In Their Words: Burdens of HIV Nursing Include Lack of Respect and Resources

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Since the early days of the HIV epidemic, HIV nurses have been asked not only to juggle the medical complexities of HIV infection but also to manage their patients' additional comorbid conditions -- while simultaneously providing emotional support. At the 2017 Association of Nurses in AIDS Care (ANAC) conference, nurses gathered in Dallas to talk about these ongoing complexities.

Several nurses who spoke with shared moments in which they had felt overburdened or stretched too thin. Although some common themes emerged -- such as a lack of resources, lack of respect for their profession, and the difficulties of navigating emotional intimacy with their patients -- nurses agreed that many of these challenges are surmountable in settings where nurses are empowered to work to the full extent of their license.

Here, we share some of their stories.

Transcripts have been edited for clarity and brevity.

Image credit: Nik01ay for iStock via Thinkstock.

Justin Alves, RN, ACRN, CARN

Alves is a registered nurse at Massachusetts General Hospital in Boston.

One thing that is [overburdensome] is that you find yourself caring about the patient more than anyone else on the team [does]. That's the one thing that, as a nurse ... [you] are the one who spends the most time with the patient, knows the most about what's going on, and ... knows that when the patient leaves here, they have a life, they have a family.

That is the most overburdensome: that sometimes with the team, you're like, "You don't get it. This is a person."

Image credit: Sony Salzman.

Zyra Gordon-Smith, D.N.P., APN, FNP-BC, AACRN, AAHIVS

Gordon-Smith is a family nurse practitioner at Howard Brown Health in Chicago.

I serve in an African-American community, and I'm very privileged to work with colleagues that are passionate in regards to serving this underserved community. What's overwhelming may be the lack of resources for us to actually do what we really need to do. If we had that kind of support …, which we're actively working on: [getting] funding from pharma[ceutical companies], or get funding for our jobs ... that's what we're doing right now, my colleagues and I at our particular site on the South Side.

In regards to what we were trying to do with women and PrEP [pre-exposure prophylaxis] -- getting them to know [that] this is something [they] need to invest in, getting them to come to church events on the South Side so you can sponsor to do the testing, doing that kind of stuff -- it takes resources; it takes commitment; it takes staff. Listen: You need to have somebody come here to do this. ... Making myself available to be at these places, these community fairs -- it's a little bit extra; it's outside the job.

Image credit: Sony Salzman.

Ella P. Curry, Ph.D., M.T.S., RN

Curry is a nurse historian.

I worked for years in a system that was a heavy medical model. ... There was not a lot of fore-thinking -- when questions would come in or opportunities would come in -- to share what we were doing; there wasn't always the thought that the key to that was our nursing staff.

That's not a quest for accolades. It's an acknowledgment that the work couldn't happen if it wasn't a multi-disciplinary approach. We're all here bringing these different gifts. It's difficult in a heavily medical model orientation: You almost have to create your own opportunities for growth and development. ...

If you go back into the history of the profession, nurses and religious sisters who started home houses and places like that, [they started] bringing in and taking care of the sick and the homeless and the hungry, and those were the precursors to many hospitals in the United States. [Then,] there was a very deliberate time where the history shifted, and a paternalistic model moved in, and I think we live in the legacy of that.

When I'm here [at ANAC], and particularly having gone through all the historical records with the association over the last year: [There are] absolutely amazing, talented, multi-dimensional nurses, and I think this notion that a nurse is a nurse is a nurse -- we know that's not the case. We all do very different things, but there are these common threads that [highlight] the essence of nursing. And we value that, we celebrate that, but it's not always highly regarded.

Image credit: Sony Salzman.

Theresa Minukas RN, B.S.N.

Minukas is a registered nurse at Massachusetts General Hospital in Boston.

There are a lot of things that, ideally, we'd like to do for people, and a lot of barriers that we identify in conversing with them -- and some things are just really out of our hands.

We can do as much as we can to support these people to overcome their barriers, but it kind of feels like a loss when you can't help them get over this one thing that is really important to them.

[It's important to put] your own feelings away about that, because at the end of the day, you become so emotionally attached and invested in these people, and want them to do well ... but also for you to make all the hard work pay off.

Image credit: Sony Salzman.

Haley MacLeod, RN

MacLeod is the HIV care coordinator at the Country Doctor Community Clinic in Seattle.

Administrative burden. It's really the basic tasks: work that I feel is not the actual nursing work.

We wear many hats, which is a good thing and a bad thing, but it can be hard. Especially if it's the end of the day and I have 10 tasks I still need to get done, and I can't see my last patient that day -- that breaks my heart. Or, I do see that patient, and I end up staying late at work and coming home to a cranky husband.

Image credit: Sony Salzman.

Bethsheba Johnson M.S.N., GNP-BC, AAHIVS

Johnson is an associate director and HIV prevention medical scientist at Gilead Sciences, Inc., in Houston. She is pursuing a doctor of advanced nursing practice (D.N.P.), nurse executive track, at the University of Texas Health Sciences at Houston School of Nursing.

My whole thing as a student right now, getting my doctorate, is systems and [the] respect that's needed to do the work we do. A lot of times, nurse practitioners are not able to practice at the top of their license: We're restricted, so that makes it even harder to really do what's necessary for patients that are very complex, like the ones that we work with.

It's supervision; it's inter-professional respect [from clinical doctors to nurses]. Sometimes, it's a barrier [to] what we're doing with the patients. We can't get buy-in, and we can't get respect. We've experienced it.

Image credit: Sony Salzman.

William L. Holzemer, RN, Ph.D., FAAN

Holzemer is the dean at the Rutgers School of Nursing in New Brunswick, New Jersey.

I'm not a direct hands-on [provider,] so I want to qualify that. But I think one of the things is that people, many people with HIV, are extremely challenged for resources. They have multiple presenting issues. So, yes, they might have HIV, but they also might have hypertension or diabetes, and a foot abscess, and five other things. They might be homeless, might live on the street, and might be using drugs. So, a provider is overwhelmed with the complexity of some of the clients. ...

A lot of the people we see, in the Ryan White clinics, particularly, are multiple diagnosed. And then you overlay mental health, which is huge. ... Let alone the depression that comes from being HIV positive; there's the clinical depression from all the things they have to live with. Then there's ... homophobia, black/racial issues, et cetera.

You will hear providers say to a patient, "What shall we deal with today?" The list is so long you'd be there for two days. Often the visit is about their HIV or the medication, but [the nurse has] to figure out how to deal with the HIV but not ignore everything else.

Image credit: Association of Nurses in AIDS Care.