SARAH: This is At the Core of Care, a podcast where people share their stories about nurses and their creative efforts to better meet the health and healthcare needs of patients, families, and communities.
I'm Sarah Hexem Hubbard with the Pennsylvania Action Coalition and the Executive Director of the National Nurse-Led Care Consortium. On this episode, we're going to hear about nurse-led research on the lived experience of sex workers who identify as women and their healthcare needs.
Joining us are two of the three researchers who were part of this research initiative, Kimberly Trout and Saumya Ayyagari. Kim is an associate professor of nursing at Villanova University and a certified nurse midwife in Philadelphia.
Welcome Kim.
KIM: Hi Sarah, and thank you so much for inviting us to be here today. It really is a pleasure.
SARAH: And Saumya holds a dual masters in nursing and public health and is the nursing workforce development manager for us here at National Nurse-Led Care Consortium. Saumya, great to have you here.
SAUMYA: Yes, I'm excited to be here and thanks for having me.
SARAH: The research article you both published along with Dr. Wendy Grube, who's now retired from the Penn School of Nursing is called In our Own Voices: The Lived Experience of Sex Workers in Philadelphia who Identify as Women. Broadly speaking, what got you interested in pursuing this topic?
KIM: So I have always been interested in health promotion for women. I feel that women especially bear a lot of the burden of work in our society and are undervalued and need opportunities to promote their health. So most of my work prior to this has centered around nutrition and diabetes and women.
But I was actually approached by the executive director of the Community Center at Visitation, Sister Betty Scanlon who came to me and said, Kim, at our center, we have women who are sex workers who come in to get a hot shower and a cup of coffee. And I feel we can do a lot more for them. So, can you do something about this? Can you find out what they would like. And so that's how it sort of started was this nexus of an idea from Sister Betty that more services needed to be provided. And the first thing that we did was a needs assessment, just a general community survey to see what was available in that community before we actually embarked on the study where we were going to ask the women to describe in their own voices what their needs were.
SARAH: And Saumya. How about you?
SAUMYA: Well, similar to Kim, expanding access to reproductive healthcare has always been a passion of mine, and my background in nursing is in reproductive healthcare. And as I've gone on in my career, I've broadened that to include expanding access to healthcare in general and improving quality of healthcare services in general.
And something that's really important to me is that healthcare really be designed for the people that it's intended to be delivered for, and that their voice be driving the design and the delivery. And when I heard about this project, I thought it was a great opportunity to hear from a population that really isn't heard a lot in general, and certainly isn't heard a lot regarding how they would like to receive their healthcare. And I jumped on the chance.
SARAH: And as part of your research, you established a relationship with Prevention Point, a Philadelphia based public health organization that provides harm reduction services. What led you to end up partnering with Prevention Point?
KIM: Part of why we ended up at Prevention Point, as I said, prior to doing the study, we did a community needs assessment of what services were in the area already and what facility might best accommodate this type of research. And after really investigating, it really seemed like Prevention Point was the best place and their whole harm reduction philosophy really worked well with what we were trying to do. So part of that was, finding out about Ladies Night and choosing Ladies Night. And part of what we had to do was get to know the women and the atmosphere. So, we hung out at Ladies Night ourselves, and we attended workshops that were presented by Project Safe to find out certain things that were important to know, such as there's a bad date list that is circulated so that the women know this person's a bad date. They have been abusive in the past. Don't go with this person. You know, different types of supports that were available and, and we volunteered and, and hung out. So, that's how we started and I think that was really important in terms of developing a rapport with the community.
At one point, I heard a woman say to somebody who was there as a volunteer, think you're better than me? And I heard that and it really was chilling to hear that comment because it's so important when you're doing this kind of work to have an attitude of I am one of you, I'm one of your community. I'm not a sex worker, but I am a human being like you and I want to relate to you as a human being and support you as a human being. And no semblance of oh, here I am, somebody better than you. So I felt that was so important.
SARAH: And you were able to speak with and actually survey individuals who dropped in at the organization's weekly Ladies Night program, which at the time Blue Laurano had co-directed. We're actually going to hear a bit from Blue right now about this initiative.
BLUE:
SARAH: Now that we've heard Blue's description about the Ladies Night program, what had you intended to learn as part of this study? What was it like to draft some of those questions?
KIM: We wanted to ask open-ended questions that would allow the women to feel free to describe in their own words. How have you felt about interactions with healthcare providers? Why? What do you consider good healthcare to be and why? When seeking healthcare, what is the most important for your healthcare provider to know about you? Those types of open-ended questions that would allow them to speak freely and go off on tangents if they wanted to. Some of the questions initially that we were going to ask after discussing with the social workers there thought, you know, those particular questions might be re-traumatizing. And so, we took out any questions that potentially could be re-traumatizing. Certainly, that could happen at any time, but certainly we didn't want to have any questions that would make that more likely to happen. And it made us also think about, because it could happen at any time because, these women had been traumatized to some extent. We wanted to make sure we had resources and places to refer them for help if they needed, if they wanted counseling, if they had a psychiatric emergency. You know, we had a plan to deal with all of these things because we knew there was that potential for re-traumatization.
SARAH: What were some of the self-identified concerns that you heard, that you were recording for your study? Saumya, if you want to take that first.
SAUMYA: One thing that really stood out was the desire to be seen as a person. Just as Kim mentioned, our efforts to be connecting on just the basic human level with the participants. And I think the participants really overwhelmingly said, you know, all healthcare concerns aside, I just want to be seen as a person. And then social determinants of health also came through regarding housing, in particular. And you know, it was a little bit surprising to us 'cause we thought the concerns would be all around like sexual and reproductive health. For example, STI testing, various, reproductive appointment access points, things of that nature. A lot of folks really emphasized like, I want to just be able to go to a primary care doctor, like, I have asthma, or I just want to be able to, if I'm not feeling well someday, to be able to go somewhere to get a checkup and my whole identity not be seen as a sex worker. So that's what jumped out for me. And I can leave room for Kim to share sort of what jumped out for her.
KIM: Thank you, Saumya. Yeah, I think you really hit the essence of it that, being seen as a person was sort of the major finding, being seen as a whole person and accepted for who they are was really important. And as you said, many of the women had chronic health conditions that required primary care for chronic health condition maintenance, such as asthma, hypertension, diabetes, Hepatitis-C those were some of the major conditions that the women were affected by.
In terms of the qualitative data. What also stood out was that women felt it was really important to have time, time and attention, and that connoted respect. And too often when they were describing what good healthcare is, they would say somebody who really listens to me, someone who doesn't just throw a pill at me. And bad healthcare is someone who just looks at the computer screen and doesn't even look at me. Someone who doesn't take the time. And it's clear with those types of cursory interactions, you're not going to get someone to reveal and trust. It's just not humanly possible in those hurried situations for people to be completely honest. And an environment where the women can feel safe. And that is part of the reason Ladies’ Night is sort of where these women can feel safe for just even a few hours each week.
SARAH: The responses here are actually quite universal among what people are looking for in healthcare and from healthcare and from a good healthcare experience. And as we're going to hear again from Blue, one of the confirming results was the need for more healthcare, which Prevention Point was ultimately able to implement on-site.
BLUE:
SARAH: And so clearly, underscoring, you know what you had sort of seen reflected in those responses. Sort of looking big picture at the study, what were some of the key findings that you came away with?
KIM: Some of the other themes that we found, the first was one day at a time and it was clear there was not the opportunity for much advanced planning. Participants talked about functioning from moment to moment, and that seemed to be a pervasive theme. There was also a theme of the system works against me and I heard multiple stories. You know, I'll read one quote. ‘I try applying for jobs, but you get none. They look at you, you know, and then they could tell you they’re homeless or whatever. So it has been really hard trying to get a job. So that's why I'm doing what I'm doing right now.’ Another theme is hustling and surviving, doing whatever they can to make money. Panhandle, go on a date, which is the term the women use for transactional sex it's a mean of survival and thank God I'm still alive, was another theme that came up. You know, I thank God, you know, I take one day at a time. And here's another quote, almost dying from overdosing Oh many times. And when I reevaluated my logic, once I found out methadone can help with pain, I just, I finally had an epiphany and got my shit together.’
SAUMYA: And I would just say that in the section of good healthcare versus bad healthcare, there was one section where folks described bad healthcare as being in a situation where the healthcare provider isn't allowing someone to feel comfortable, telling what's going on with them. And good healthcare, being in an environment where someone is feeling comfortable enough to be honest, and that seems intuitive for many of us. But it was great to actually hear that and now to share that with you all, so that we can continue to emphasize that point in creating that safe space for our patients. So that they can actually share what's happening and we can actually support them to the best of our ability.
SARAH: And that seems to come back to that harm reduction model of care and what we heard from Blue and learning about Prevention Point. How do you think the research could be useful to primary care providers going forward? And how they think about care for this community and others who have traditionally experienced stigma?
SAUMYA: So there's not one right way to interpret and apply what we found. But I think going back to what I just mentioned about creating the safe space and the comfortable environment is really critical. In nursing, we talk a lot about therapeutic communication and building rapport with your patient. And I think this goes back to the basics of nursing in creating that space. And we actually did a little bit of a literature review to look into other models that were incorporating similar ethos that our participants were asking for. And there was one model through something called the Empower Study and they had certain recommendations which, we found to be very helpful and also affirming. Because within reproductive healthcare and reproductive healthcare visits, this is how providers are taught to treat patients. So going into the details now, one example is, you know, when you talk to folks, make sure that they're fully clothed. When you're asking them questions, unless it's necessary, you don't need to talk to somebody when they have their clothes off. Another option to think about incorporating is like, ensure that if you're making contact with somebody or touching them, always ensure you're asking consent. Always ensure that you're explaining why you're doing what you're doing. You know, making sure that you're making eye contact with folks, making sure that you're adopting trauma-informed care principles. So, these elements that I'm mentioning did not come directly from our study, but they are valuable tools in the toolbox for moving in the direction that our participants seem to want to go.
KIM: Just a few more things that came out of the Empower Group about not blocking the door, making sure that the patient can always see that they can access the door, avoiding typing or appearing distracted. And I think there's a tendency when providers are doing their notes, especially in a population that has felt stigmatized, like they don't know what this person is writing about them.
SARAH: In many ways, your research is adding a new perspective. I mean, sort of building upon this body of work, but certainly bringing to light this new perspective that hasn't been heard before about street-based sex workers who identify as women. But at the same time, this population has been there. Why has it taken it this long? And why do you think the community hasn't been heard before?
KIM: That's a great question. And quite honestly, I feel a lot has to do with the place of women in our white dominated, patriarchal society, where women are objectified and seen for their utility to the people in power and not treated fully as human beings. And of course, if you have women of color, you have that intersectionality of racism as well.
So I think that a lot has to do with society's view and stigmatization of these women. And I feel really glad that we did this work, Saumyam because I feel it is lifting their voice and hopefully will help these women to obtain better care for themselves.
SAUMYA: Yeah. I feel like Kim took the words right out of my mouth. I would also like to say that our population that we looked at for this study, in particular, they were speaking of intersectionality, they're the intersection of sex workers who identify as women, folks who use IV drugs, folks who are homeless.
And so all three of those demographics are groups that are heavily stigmatized and they belong to all three of those groups. And working within healthcare myself, when I was in the inpatient setting, someone from any of those groups, let alone all of them would come in, like you could just see the sense of staff rolling their eyes or people feeling uncomfortable when, when such a person was their patient assignment.
And I think part of the reason why it's taken so long to actually ask folks, you know, what do you actually want is because of this stigma and not seeing people as people, which is really, you know, what the participants said that they wanted. And I wonder too, if some folks in healthcare, have this viewpoint. Now I'm just purely speaking off the cuff here, you know, not based on evidence, but I think that a lot of people in healthcare haven't been exposed to this population knowingly anyway, or haven't really like viewed their patient as like a fellow human being, let alone a patient who might come from some of these demographics. That's what I would say.
KIM: You raised some really good points, Saumya. And I was just, as you were talking, taking note of the percentages of those things that you talked about that contributed to that intersectionality. 82% of the women in our study were homeless, 90% had food insecurity and 76% were in substance abuse treatment. So, as you said, imagine all of those things coming together and thinking about how most often they have been treated by healthcare providers. Of course, why wouldn't they stay away? And I think that's the beauty of Prevention Point, is they really do feel safe and respected there. And that's why it was so important to bring these primary care services to them at Prevention Point, at a place where they knew they could feel safe.
SARAH: What do you think could happen sort of on the front end as we're training providers to maybe change course here, you know, to speak to Saumya's point that, that maybe that exposure hasn't existed. So how, how do we change those preconceptions and avoid the stigma in that, in early education and training.
KIM: That's a great question. And I think we are using simulation for so many different things in nursing education that I think this is an area where it's really ripe for development. And you've given me a great idea for my next project, which is to write a simulation, to educate nursing students about how do you deal respectfully with these situations. As you said, Saumya, are so unfamiliar to most of the people that are in the profession, entering the profession. That would be one way.
SAUMYA: Yeah, I, I think there's myriad ways. The simulation Kim offered is a great idea. I also think. when someone is in school to become a healthcare professional, there's so many things on their mind that they need to complete. It's a, it's very task-based, like task-oriented type of training. And healthcare providers students have a lot on their plate. And, I think that if there was some opportunity to allow more space for reflection, after patient interactions or some way of perhaps building in a non-clinical volunteer experience with certain populations where like, say a student didn't have to have a specific assignment or write a care plan or develop some sort of documentation, but just like the free time to relate on a human being kind of level like Kim and I did at, at Ladies' Night. Perhaps it could count for their clinical hours, but the responsibilities would not necessarily be the same. Maybe that would allow for a little bit of just the mental space to be able to have that reflection and internalize that and move forward.
SARAH: So what do you hope this research will lead to? You’ve eluded to a few things, but you know, what's next?
KIM: I would love to see facilities like Prevention Point replicated throughout the US where you start with a harm reduction principle as your basic philosophy, and from there you treat people with dignity and you provide them the services that they request. But providing that safe space is the key factor where they feel they can be accepted for who they are as a whole person, just as they are.
SAUMYA: I think it would be great to also continue our model of thinking about healthcare design. So, continuing to encourage when thinking about delivering healthcare to a certain population, the first thing is it's important to make sure that population is at the table and having a say in how the healthcare is structured.
Because that's what's going to work best for that population and they're the experts of their own life. And I think embracing that philosophy when it comes to research and when it comes to designing how services are rolled out is really important. So that was more of a broad brushstrokes answer, but I think that's a key element here that we need to emphasize.
SARAH: Well, thank you so much for the work that you did and for sharing it with us today.
KIM: Thank you, Sarah.
SAUMYA: Thank you, Sarah.
SARAH: And special thanks to Blue Laurano for taking time to talk with us. For more about Prevention Point and the organization's approach to providing harm reduction services, log on to ppponline.org.
You can find our most current and past episodes of At the Core of Care wherever you get your podcasts or at paactioncoalition.org.
You can also stay up to date with us on social media by following @PaAction and @NurseLedCare.
At the Core of Care is produced by Stephanie Marudas of Kouvenda Media and mixed by Brad Linder.
I’m Sarah Hexem Hubbard of the Pennsylvania Action Coalition.
Thanks for joining us.
