It s Not Just About TB : The Experiences of Public Health Nurses During a Tuberculosis Outbreak Tracy Evanson, PhD, RN, APHN BC Lucy Heintz, MS, RN, COHN S Background Although tuberculosis (TB) is no longer the major cause of death that it once was in the US, the threat of TB outbreaks continues to be a major concern for public health departments. Public health nurses (PHNs) commonly play a major role when outbreaks of TB occur. Description of the role of PHNs and their experiences in responding to TB outbreaks is largely absent from the extant literature. Study Purpose To describe the experiences of public health nurses when responding to a Tuberculosis outbreak. While there were many different disciplines and individual professionals who contributed to the management of this outbreak, and any outbreak, we were specifically interested in the experiences of PHNs for this study. Methods Qualitative, Descriptive approach Semi participatory Model Semi structured interviews, audiorecorded Transcribed verbatim Analysis guided by Dahlberg et al s (2008) approach (Whole Parts Whole) The Outbreak Occurred in Midwestern community Major outbreak activity occurred between 2012 2014 27 active cases identified and treated via DOT Ranged in age from infant to 90+ years 70+ latent cases identified and treated The Outbreak, cont d Prior to outbreak, the community and the state TB levels were significantly lower than the US average Involvement of local & state health departments and the CDC Client population faced issues of: Homelessness Extreme Poverty Substance use/abuse Incarcerations 1
Participants: N = 15 PHNs Age Range : 28-72 Mean: 48.4 Hours Worked Per Week Range: 12 40 hours Mean: 36.5 hours Total Years in Practice Range: 6 50 years Mean: 24.2 years Race Caucasian: 14 More than one race/ethnicity: 1 Highest Degree Baccalaureate: 80% (n = 11) Masters: 20% (n = 4) Total years as a PHN Range: 2 30 years Mean: 12.6 years Findings It s Not Just About TB It s Not Just About TB Challenging conditions among client population Lack of planning, preparation, & organization It s not just about TB Constantly reacting to problems and changes No end in sight TB related Communication roles Concerns regarding evidence based practice Stress Coping Multiple Roles Role Keeping ambiguity other and role programs conflict going If you think it's just about the disease process, you're missing 90% of what the nursing prevention is. You're a social worker, you're risk awareness assessor, you're a child advocate. Administering the TB medications and providing that education was a tiny part of what this outbreak brought to our table...i felt prepared to do TB education and administration and if that's all that was it would have been a pretty seamless process, but that was a tiny part. Negative Outcomes Positive Outcomes Lifestyle Challenging conditions among client population Poverty Homelessness Addictions Incarceration Manipulation As the number of patients grew and the needs, of course, were many because of the population with them being mostly homeless population and, of course, with all the social issues that go on with the drinking and drug usage and that there were just a lot of things that had to be taken care of. Housing was one thing, groceries and then making sure they were getting to their doctor s appointments, all of that. 2
Complex Relationships Concerns for Children And, a lot of the clients were very intermingled where this gentleman you'd find out well, these kids in this house were his kids, and these kids in that house were his kids. There was a lot of his, mine, and ours, and theirs, and grandmas taking care of grandkids. And, so it got very blurred of, this one is the father to that one, that one, and that one over there. There were children involved in some of the visits. So, the circumstances of maybe they weren't home because their kids needed to be somewhere or they were home with their kids when the kids should have been in school. So, then you start thinking about, "Well gee, how does this play out?" "Who am I supposed to be telling?"... Any common sense folk would say, "Okay those kids should be in school, so why aren't they in school?" Or you see some questionable items in the apartment when you go in there and it's like, "Oh my gosh, that pan was sitting there on the stove three weeks ago when I was here on a weekend and it's the same pan full of the same stuff.".. So, a lot of extraneous circumstances made those visits challenging. Mandated Reporters Incentives Source of stress Felt like this might put their role of administering DOT in jeopardy Perception that administration s greatest emphasis was on making clients completed treatment We were told our role was medical. We go in there, we do the meds, and we leave. How can you do that, you know? I guess you felt kind of torn. Caused ethical struggles for some of the PHNs I m a nurse. I was trained to be caring and to be helpful and to help people get well. But I m also a taxpayer. It s hard to balance those two out when you see what they re getting and the way they act towards people... I think those were the things personally that I have to deal with. Knowing full well Yes, watching you take your meds is going to save either you or somebody else. But, as a taxpayer it really bugs me. It was really tricky, because you wanted to incentivize them, but you didn't want to enable them. Reactive vs. Proactive Constantly Reacting to Problems and Changes Constantly reacting to problems and changes No end in sight We reacted, reacted, reacted instead of getting ahead of it. We were always coming late to the table. Lack of planning, preparation, & organization Concerns related to evidence based practice Communication I don't think that we were very proactive. I understand in an outbreak a lot of times you don't have that ability to be proactive, but through the whole time of the outbreak, I felt we were always in reactive mode. 3
Lack of planning, preparation, and organization Included things like: Need for TB specific education Need for education on working with various issues within the client population Lack of protocols and contingency plans Things were changing so rapidly, and the client s lifestyle was so unpredictable that it was hard to plan and stay organized. I think had we somewhere in the beginning of that figured out a game plan... that we would be able to say, "No. We're going to stop for a minute and let's get a game plan going." It probably would have made things easier as we went on. 7 Day DOT Concerns Related to Evidence Based Practice So we're going through all of these hoops to see these people on the weekends and we really could never find the evidence that supported seven days a week DOT. So it was kind of a morale buster that here we are going, "What the heck? Who's listening to us?" or "Who's going to bat for us?" If there had a been a page in a book that said, "This is the best practice for getting these people treated," I don't think it would have a problem. Concerns Related to Evidence Based Practice (cont d) Extended Treatments If everything just goes like clockwork, some people can take a six month course and be fine. Most it's nine months to a year. But some of ours were going beyond that year mark... This provider started doing more drug screening to make sure that the medication was being absorbed. If he felt that their levels weren't where they needed to be, he would start their treatment from that period of time, when we could show that they were being absorbed...therapeutic drug monitoring. So instead of counting the medications that they had taken prior to that, if he felt that they didn't become therapeutic until a certain date, then he could go from that date and start them over...but the CDC would say, "He's already had three months, and if you can show that they're therapeutic and clinically improving, why do you need to go beyond that 12 months?" Communication Weekly meetings were key That was probably one of the best things that was done, because it really helped everybody was in the room, everybody heard the same thing that was being said, because that was one of the frustrations that nursing staff was having is that they felt that they didn t have enough information, they didn t know what was going on. They were expected to go out and do these visits, but they felt like they didn t have the tools that they needed, basically. That, I think, really helped to bring the group together. We are taught to be evidence based and research focused and so many decisions just seemed so wonky and like, Yeah, so and so s labs aren t looking great, so we re going to extend their treatment, like, for another year. It was just like, Where s the research that says that that s the next step? Not enough communication Implementation of Electronic Health Record It was a lot of e mails and then it would be all of a sudden something would come up and you'd go, "I didn't know that."... In the busy ness of the day, somebody would forget to forward an e mail and you wouldn't get that, or you weren't in the office all day so you didn't get that e mail for two or three days. I found having the electronic record very helpful, because, if I wanted to know something, I didn t have to physically go marching either into [the TB case management nurse s] office, and try and find a paper chart. I was able just to pull it up on a computer right in front of me and I could look to see what was going on. 4
No End in Sight And, so, if we have this lump of people that should be going down, but you're adding more people and they're staying on and going on. The work was increasing rather than decreasing and the nurses weren't seeing any end in sight and they were already struggling with that. TB related roles Multiple Roles Keeping other programs going Role ambiguity and role conflict TB Related Roles Keeping Other Programs Going Advocate (self, clients, peers) Case Finding Case Manager Collaborator CDC State Department of Health Emergency, Planning, Response Epidemiologist Social Services Foster parents Medical Center Correctional Facility Law Enforcement Schools Consultation Counselor Health Teaching (clients, community, providers) Delegated functions (DOT) Screening Some redistribution of workload with other programs created a learning curve for those involved Mixed perceptions some felt that the extra TB work they took on did not significantly affect their work on their own programs; several felt that it did A lot of things got put on the back burner, a lot of the smaller projects, policies, procedures, some of those kinds of things, they just had to. There wasn't enough time in the day to work on some of that stuff. Once it all settled down, I think a lot of us looked at our offices and went, "Oh, my word!" There were piles everywhere and things to deal with that just kept getting put in a pile and put in a pile, and then when it all settled down and there finally was a day of, "Okay, I need to start addressing these little things." Role Ambiguity/Role Conflict PHNs, at times, felt uncertain of role I would say, get guidance early from whether it's the CDC or your State Health Department on how to define the roles, what you should be doing, who should be doing what. And, get those clear early on... There was [confusion about that], and that was nobody's fault. This was a whole new experience for everybody. We were all learning, and we all needed that direction. So, I think the sooner you can get the help in that you need, from outside, of how to define those roles. Medical Director vs. Infectious Disease Physician So, we were kind of in a weird situation because our health officer, who oversaw the Health Department, was also the physician that was seeing all of the TB clients. So, it was like there was this weird sort of got to play nice feeling, because we didn't want to make anybody angry. It was just an interesting connection that he was in both roles. It caused some issues I think. Because [the physician], I fully believe, in his role erred more on the side of being the primary physician for the client than he ever did for being our Health Officer and being helpful to us. 5
Impact on Personal Life Stress Hard to turn it off I think there were days when I was sadder or more depressed, when I'd come home, kind of felt beaten down. But, you get back up, and you go back and do it again, and then you have a good day the next day. Pressure to Protect the Community Weekend DOT Level of imposition varied Those with young children faced unique challenges Like, I was super conscious about asking other people to help when they knew that, traditionally I work during the week. So, I don't think it changed my relationships, but I think I was super conscious that I wasn't putting people out. Added travel time/mileage for those living out of town We felt very responsible for the community... If we didn't complete it, that individual obviously would regress and keep spreading it. Safety Concerns Guilt Over Caring about Clients There were a couple of instances where we knew that there were guns involved at the apartment building where several of our clients were being housed Perceived risks to safety varied by prior experience with home visiting There were some staff that hadn't had a lot of experience in making home visits, and they were, at times, surprised by the conditions in which they had to go make home visits. And that surprised me, because I just assumed that all public health nurses had had some expertise with going into rundown homes and being in homes where children are...at risk, and I thought that was a skillset that all of our staff had developed, but I found out not necessarily so. I almost felt bad that I started to care for some of the clients. I mean, it was like, we'd see their crazy behavior and their addictions, and stuff but, don't be afraid to be a human. Even though you're supposed to be professional, you're supposed to just do your job, you're still human. So, don't beat yourself up if you feel bad or if you go home and cry at night. 6
Strained Peer Relationships Lack of Support from Leadership Some of those occasions where you thought, "You know when the last time so and so had the weekend?" Even when somebody'd take a vacation and you knew they deserved it because we all had our vacation days, it was kind of the grumbling of, "Oh, she's going to be gone now for a week and that puts us in a bind." Immediate supervisors largely seen as supportive Director of Nursing having a hands on role was seen as supportive But overall, did not feed supported by those in primary positions of leadership I think as staff, we would have felt more appreciated if that had been the leadership's role of, "Let me go out with you. Let me see what this is like for you on a Saturday." It may not have changed that you had to go out on a Saturday, but at least you would have felt a little more supported, I think, that they understood what you were going through. It would have been nice if, even on one day, somebody in management would have just said, "I'm ordering pizza. Everybody sit down." I think you didn't even think about relaxing even if it was just for a half an hour...i think if somebody had done little things like that throughout that time for us to just recharge even if it was for an hour here and there, would have made a world of difference. I think both to feel valued as an employee but to be able to just take a deep breath.". Sentinel moment: At one time we had a meeting, and we were so frustrated because a lot of the drug levels weren't quite where they should be, the therapeutic level. And [he] had actually stated out loud in the meeting, "Are the Public Health nurses even are they even going out and watching them take their meds?" Oh, it was so degrading...i felt like, "You come out here and see what we're dealing with." Feeling Underappreciated by Others I think that when you get a big outbreak like this, it seems a lot of the focus is on the medical aspect, the medical treatment, of these people, because that's the big guns, you know. And, the case finding, the epidemiology of it. But, the nurses, I felt overall, we were just sort of down here, going out giving them their pills... I think that we could not have this success rate without the public health nurses doing it. And, doing a darn good job. And, I think that gets overlooked a lot, because it's not the big flashy important people doing it...we're just out there doing the hard work, boots on the ground, and sometimes you feel underappreciated. Very unappreciative. You know, when you show up and these people and I'm not saying that they need to be happy or glad to see us. But, don't give me attitude and sass and be irritated with me when "I don't want to be here either on a Saturday or a Sunday, but I'm here. You need to do this."... I understand they're probably frustrated with seeing us all the time. But, some of the attitudes. 7
Low Morale I saw morale going down as the workload went up. It got a lot of tension of not wanting to do it anymore, just saying, "Forget it, I don't want to do these clients anymore. Someone else needs to take over." I think a lot of us were just it was burnout. Negative Outcomes Some Peer Relationships Negatively Affected It brought a lot of division between a lot of us. And, it's still there... Not as friendly. Not as much teamwork. Uncertainty: What If It Happens Again? I look back and I think, "I should have been more prepared." And, then I think, are you any more prepared if it happened again today? Things I did for Myself Coping Seeking out additional education on TB to feel better prepared, Trying to give themselves some space and time to reflect on the stressors that were occurring, Using humor, Relying on their faith and spirituality. Others felt it was harder to maintain good personal coping I didn't do enough for myself, and I did get a little burned out, I'll be honest. 8
Taking Safety Measures Police Escorts Some reports of using this measure Concerns there could be repercussions for managing the outbreak It was mentioned... that you could request a police escort. But, it was also stated that our clients have issues with law enforcement or trust issues. So, I think there's a fine line between us providing medication and separating ourselves from the legal thing. So, yes, you could request a police escort, but it might hinder our process with these clients. Looking out for each other There were times where you walked up to a house and you thought, "I'm not 100 percent about this." I know what I did was I would call [another PHN], "I'm going into so andso's house. If I don't call or text you back in 15 minutes, worry. Send some reinforcements or call the cops." For me, that was a good safety net. Other measures Pepper Spray Keeping Cell phone in pocket Using marked Public Health car Having family members call and check on them Peer Debriefing and Support Support and validation from outside agencies Having those folks there that could just say, "Yep, I've done that. Here's what you need to do. You've got to ring the doorbell instead of knock because it doesn't set them over the edge," or you know some of those like tips and tricks and stuff. I think that probably was even more helpful than the knowledge and the meetings and that kind of stuff. Just feeling like somebody else was out there going through the same things. We would talk about different cases and, "This is how I would handle it." We did a lot of brainstorming. It wasn't just to vent. It was healthy to talk about it, because there were some situations that we were involved in that were a little on the scary side....we provided a lot of support to one another... And, it wasn't bad mouthing. It was just strictly, "This is what I do to survive. This is what I would do in this situation." CDC, DOH So, when [the CDC] came and gave us some feedback, like written feedback it was finally like, "Okay, somebody's finally listening to us." Mayo Nurses I think one of the probably most beneficial was when two nurses came they were consultants with the Mayo TB center... Having a nurse actually coming, visiting not so much just talking, teaching, or whatever, but sharing their experiences. We'd say, "But, we do such and such," and they say, "Okay, well, that's great, but, you know, you might want to try this."... They get it. They're nurses, they understand what we're doing out there and what the stresses are on us. So, that was helpful. I Learned A Lot I think, now, I have a much better understanding of the TB program and what s all involved with it Positive Outcomes I have a better understanding when we do have team meetings as to what people are doing... How you can walk into a home and things can go completely opposite of what you think it s going to be. 9
It Opened My Eyes We All Made It Through It It did open my eyes to a lot more out there that I had no clue was going on in the homes of kids... I guess it just totally changed the way I think of a lot of clients. You really, truly don't know what they're dealing with or what they're going through. So, we didn t crash and burn. We didn't fall apart. We didn't have a bunch of people quitting. We got through it, which is good... People didn't run away. We stuck it out. It was hard sometimes but it's good that we're all still there. Relationships Were Strengthened Everyone Completed Treatment I think for some of us, it made it stronger because you really learned that, "Okay, she's busy. I need to step up to the plate. I'll take this." I think you watch out for each other a lot more when you've got a group of three of you that are going out on a Saturday... I think, in a lot of ways, it brought us closer together to watch out for each other. "You know, when you think back on it, holy cow, look what we did. All the medications we were giving and setting up for 26 different people, and nobody ever got the wrong dose or the wrong medications. Everything was done right. Nobody died. Everybody finished." We Protected the Community I m Proud of Us So, those are the times when, no matter what went wrong, then we can look back and say, "You know what, you guys, we did it." It was contained within this demographic. It didn't spread in schools. It didn't spread all over the community. I think we will always look back on it sort of like we do some of the defining moments in our community... This is was our public health emergency that we all rallied around and did good work to make sure that the community was safe. I hope that what shines or what comes through is the pride that we have in the work that we do and how successful we were, and I think really, truly, it is because of the role of being nurses and specifically public health nurses. 10
The image part with relationship ID rid3 was not found in the file. 4/16/2016 Discussion Conclusions The experiences of the PHNs provide knowledge about what it is like to be a front line worker in a Tuberculosis outbreak The complex conditions in the population were unique to this particular outbreak, but at the same time, given the populations that are most at risk for TB, similar conditions might not be uncommon in other outbreaks The knowledge gained from this study can inform those who might experience a disease outbreak in their community PHNs play an integral role in response to a communicable disease outbreak Administrators need to anticipate issues related to ethics, role ambiguity and conflicts, safety, teamwork, and maintaining mental health that front line workers may face PHNs should be supported in their work and given an avenue to voice their concerns Advocacy for their concerns needs to be attended to by leadership Front line workers need to receive training, even in the midst of an outbreak, in relation to complex issues they will face in the population served Counseling/EAP services should be encouraged and facilitated. THANK YOU!! 11