Health Literacy and Patient and Family Engagement: Strategic Tools to Prevent CAUTI (July 9, 2013)

Webinar Transcript

Paul Tedrick
American Hospital Association – Chicago
July National Content Call
July 9, 2013
11:00 AM CT

Operator: The following is the July National Content Call for Paul Tedrick, with the American Hospital Association of Chicago on Tuesday, July 9, 2013 at 11:00 a.m. Central Time. Excuse me, everyone. We now have our speakers in conference. Please be aware that each of your lines is in a listen only mode. At the conclusion of the presentation, we open the floor for questions. At that time, instructions will be given as to the procedure to follow if you would like to ask a question. I would now like to turn the conference over to Mr. Paul Tedrick. Sir, please begin.

Paul Tedrick: Good morning/afternoon, everyone, depending on where you're at. I wanted to welcome you to the On the CUSP: Stop CAUTI Content Call series. Today's topic is health literacy and patient and family engagement, strategic tools to prevent CAUTI. Our two speakers today are Barbara Meyer Lucas. She's a Project Consultant with the Michigan Health and Hospital Association, Keystone Center for Patient and Safety Quality. Also is Milisa Manojlovich.  She is an Associate Professor with the Division of Nursing Business and Health Systems at the University of Michigan School of Nursing. So without further ado, I'm going to turn the call over to Barbara Lucas.

Barbara Meyer Lucas: Thank you, Paul. Good afternoon, everybody. We're going to be talking about two principal concepts during our time with you this afternoon, first helping you to understand the concept of health literacy and its role in your work on CAUTI prevention, and secondly, Milisa will be speaking with you about understanding the importance of engaging your patients and families to help your teams prevent CAUTI.

So moving to Slide 5, we're starting, first of all, with an introduction to the concept of health literacy, and during this first half of the talk, we are hoping to leave you with a clear definition of the concept of health literacy and its implications for patient care. We'll be walking through some of the major barriers that all of us face when we're dealing with health literacy issues. And finally, we will be leaving you with some concrete strategies to help you enhance health literacy with the patients on your floor.

So moving now to the next slide, Slide 6, I wanted to start, first of all, by talking about what do we mean by health literacy? It's a term that's very much in vogue, and we hear a lot about on a number of process improvement and quality improvement projects we're all involved in, but put very simply, health literacy is the ability to obtain, understand and act on health information. And it is very definitely dependent on a clear exchange between patients and their families and all of us on the medical team.

Moving to Slide 7, if we take a step back and think about what are the premier reports that got all of us initiated in the path to improving safety for our patients, the document called, “Crossing the Quality Chasm,”, which was released in 2001, from the Institute of Medicine; one of the major contributions that report made to all of our work, is by outlining key health care dimensions that we should all strive for in our patient care delivery settings, and that is that to have truly quality care, we need to make sure that that care is patient centered, timely, safe, effective, that is evidence based, efficient and equitable for all of the patient populations that we serve. So if we're going to try to reach the establishment of these dimensions in the care we deliver, it's really important that we lay the groundwork by improving our communications skills with our patients and the families that support them.

So moving to Slide 8, why would it be important for us to think about this communication aspect with our families? First of all, we know from the literature that patients with low health literacy are more likely to be hospitalized, so they're at greater risk for winding up in the hospital. This is a study from the Journal of General Internal Medicine from 1999 that found that patients with low literacy are twice as likely to be hospitalized as patients that are literate. 

If you move to Slide 9, we know that low health literacy also affects chronic disease management. One of the major areas that illustrated this was looking at diabetic patients, and this is a study from the Archives of Internal Medicine in 1998, that looked at some of the key components in terms of educating our diabetic patients. So when they checked to see whether or not diabetic patients could teach back to them the symptoms they should watch out for that might indicate their blood sugar was low, only 50 percent of patients with low literacy were able to describe those symptoms, as compared to 94 percent of patients who were literate. And perhaps more importantly, when we asked those patients, were they able to describe what they should do if they felt that their blood sugar was dropping, only 38 percent of patients with low health literacy were able to describe what steps they should take, compared to 73 percent of patients that had a greater degree of literacy. If we look also at the area of patient safety; all of you on your units are aware of the issue of sentinel events, and as you know, the Joint Commission collects data on those, and shares that feedback with us. So from a report that they released just this past February, we know that, for example, in 2010, there were 802 sentinel events reported to the Joint Commission, and 82 percent of those events listed communication issues as one of the key root causes contributing to those events. Similarly, they were involved in 61 percent of events in 2011 and 59 percent of events in 2012. So communication issues are often cited as one of the root causes that lead to significant safety issues, as characterized here by sentinel events in the last three years.

Moving on now to Slide 11, how does this apply to our CAUTI prevention efforts? One of the key focuses of our talk today will be helping you to get your patients and families more involved in preventing CAUTIs in their care, and so definitely, if they understand the rationale behind that, we can help them contribute to making sure that we're using the appropriate reasons for catheters, making sure that catheters are appropriately inserted and maintained, and patients can also be engaged in helping us be ware to the fact that they need to come out as soon as possible.

On Slide 12, again, when we improve our medical communication, it will enhance patient-centered and compassionate care for patients that do have catheters, help improve their patient safety by reducing infection risks, and hopefully reducing prolonged hospital stays due to CAUTIs.

So moving now to Slide 13, if health literacy is so important, what are the barriers that are preventing us from addressing this adequately?  And I'll be reviewing with you four major categories of barriers that we do find in regard to health literacy. First is the complexity of our current health care system. Secondly – patient factors. Third – physician attitudes and communication skills, and finally, nursing issues. There are other barriers as well, but these are the four major topics that we'll be covering in the next few minutes. So starting, first of all, with the complexity of our health care systems, if you think back to the way health care was delivered 35 years ago, as compared to today, you can look, for example, at the treatment of Acute Myocardial Infarction or heart attacks. So 35 years ago, if a patient was seen and admitted to the hospital for an AMI, they generally stayed in the hospital for four to six weeks of bed rest. And now, we usually have a length of stay of two to four days. Thirty-five years ago in the PDR, there were roughly 800 prescription drugs available, and now there are more than 10,000. Also, the treatment of newly diagnosed diabetes 35 years ago was very different from what we do today, in that a newly diagnosed diabetic was typically admitted to the hospital and received two hours per day of diabetic education before they were released as being judged to be relatively competent to manage their problem at home. Now, largely, this is done with outpatient management, perhaps zero to three hours of classes. We rely on handouts, internet, and in some cases, telemedicine to manage our diabetic patients. So a very different scenario from 35 years ago.

Moving now to Slide 15, as I said, there is an increasingly complex health care system, and this is also manifested by the fact that many patients now, if they are admitted, are not cared for by their primary care physician or their family physician, but by the use of hospitalists, or they may be in a teaching hospital with an academic service following them, so there is a disconnect from their regular provider. We now expect much more self care and self education. There are multiple handoffs,  not only within our hospitals between units, but also to extended care facilities and ambulatory facilities. And as we know from our work with CUSP on the CAUTI project, every patient care unit has a different culture, a different set of expectations about how staff work together, and that can clearly impact how medical information is communicated to patients, and how well they understand. This is an example from one of these states that we work with in terms of safety culture, using HSOPS dimensions of safety culture. I think many of you on the CAUTI project have seen this type of slide when we've discussed your data with you. But this is an example of the disparity we often see, and this is a very typical pattern that we see when you look at system barriers in terms of teamwork within units versus teamwork across units and handoffs and transitions. So pretty much across the board, we're finding that states were relatively high on how well they believed they're working as a team within their units, but those handoffs across units, and those handoffs and transitions for teams, as well as patients, are perceived as being less safe. And all of this can definitely impact how we're communicating information to our patients.

So moving to Slide 17, this is an example of some of the patient factors that can be barriers to understanding medical information. And this is the most recent national adult literacy survey that was reported out in JAMA in February of 2012, in which adult patients were scored on four levels to see how well they read just ordinary information. This was not health information per se, but ordinary reading material.  And the study was really informative in that it found that only 12 percent of adults in this country read at a proficient level.  That's roughly at a high school graduate level.  Fifty-three percent read at about an eighth grade level, but look at these triangles or the pie wedges that red and orange. It found that 21 percent of adults in the United States read at about a fourth grade level, or basic level, and 14 percent barely read at all. So if you combine those two wedges of the basic and below basic categories, roughly 35 percent of the patients that we are seeing in our health care settings essentially cannot read. They read at a fourth grade level or below, so roughly one in three of any patient that you're trying to teach about their health care problem, or convey what you expect them to do when they leave the hospital or leave your ambulatory site, essentially are not good readers at all.

If you couple this then with the next slide, a patient-related barrier is aging. As our population ages, as the baby boomer population ages, their ability to read well also declines substantially. So in this study from JAMA in 1999, if you look at adult patients between ages 65 and 69, about 25 percent have marginal or inadequate literacy, but that goes all the way up to more than 70 percent by the time they're over 85. So you couple the general difficulty reading in our population with aging, and we have a significant barrier to understanding health information.

Moving on to Slide 19, however, we just wanted to emphasize here that patients, when they present to you in the clinic or in the hospital, are extremely vulnerable because we have them sitting on exam tables naked, sitting on that crinkly paper, and it's not really a teachable moment. Most people present to us for health care when they're sick, when they're afraid, when they're embarrassed. They're in a compromised setting already, and it's not really a teachable moment for the best absorption of health information. So even for patients that generally do read well and generally can function in an ordinary situation, when they're sick, when they're tired, when they're afraid, when they're in pan, it's an entirely different situation, and we have to keep that in mind when we're trying to convey information about their health, particularly when we're asking them to take action based on that information.

So moving to Slide 20, I want to touch briefly on some of the physician and nursing barriers that may occur when we're trying to convey medical information. This cartoon saying, “I'm going to give you a mild sedative to counteract your really annoying questions”, and is meant just to exemplify some of perceived attitudes that physicians may have when they're meeting with patients. Physicians frequently cite to me, when I do teaching about health literacy and communications skills, “I just don't have time. I need to get in and out of the room. I have other rounds to do. I have to be down in another department. I have to go look at X-rays. I have another PAP schedule ahead of me for this afternoon in my clinic.” And so time is often cited. But we're finding out more and more, as we study physician communication, that some physicians really have difficulty being questioned by patients, and struggle with being receptive to questions. So that can be an attitudinal issue that we have to come to grips with. Until recently, there has not been a major emphasis on communication skills in residency programs, but fortunately, that's now changing. And this is one area that we do address with physicians, to each them how to be open to questions, and how to listen more, rather than just conveying information. So it's an area that's a subject of a much lengthier discussion than we have now, but something to keep in the back of your mind.

Similarly, on Slide 21, there are barriers that nurses encounter, and again, time is a huge barrier for all of personnel on units and in particular for nurses. Nursing staffing ratios are always an issue, and there is so much information that nurses need to convey in addition to their clinical duties, so we're very much aware of that, and we're hoping, as we move through this presentation, we'll give you some tips that will acknowledge that time barrier, but still help you find ways to communicate the information clearly. Another major nursing barrier is often, there is a lack of clarity on the nursing and physician team, as to what the daily goals are for that patient. For those of you who worked on the CLABSI project, which as you know, we emphasized that there should be multidisciplinary rounding, that everybody is on the same page, if the nurses are giving different information to the patients than what they heard from the physician, due to poor communication between those two disciplines, that can make it harder for patients to understand and retain information. In our particular project, this includes the reason for the catheter, so we need to make sure that if there is a legitimate reason for the catheter, that the nurses convey that in the same way that the physicians do. And finally, as I alluded to earlier, there are cultural issues between physicians and nurses and between units, that can, even unconsciously, impact the way that we deliver medical information to our patients. So if we know that there are those barriers, the system barriers because it's a more complex health system, the patient barriers in terms of reading ability aids in their embarrassment, pain or their suffering, as they present to us, and the physician and nursing issues, how do we move forward then with strategies for improving medical communication?

On Slide 22, we're going to be talking about system strategies and individual strategies that each of you can undertake as individual health care providers to improve your communications skills. So on a system level, we're going to be talking about creating a patient-centered environment on your units, and assessing all patients for literacy, and as individuals, there are things that each of you can do, on your own, to  help improve your communications skills.

So moving to Slide 23, when we're talking about fostering a patient-centered unit, there are some key strategies and philosophies that underlie that concept. Again, remember back to the Institute of Medicine report, one of the key elements of having a quality health care team and a health care system is that it is patient centered. So what really means is that when people step on your unit, they can perceive that there is an attitude of helpfulness, that you are respectful of patients' privacy and dignity, and that you convey, by the way that you interact with them, that this is a safe place where they can share information with you about their health, about their social situation, about their learning skills, and you will not judge them for the place that they're coming from. In short, this means treating all patients as if they were your family.

On the next slide, we also want to make sure that all of us are aware that we need assess every patient that we come into contact with in terms of their literacy level. And so some ways we can do that are by asking how far did they go in school, how comfortable are they with the way they read, how do they best learn? What is their social history or their support system? Do they have someone who typically helps them with their care, with their visits to the doctor, with their medications at home, and who is that person, and can we make sure that they're included in all the crucial discussions we have with that patient, particularly at the time of discharge. It's also important that we learn to start to watch for subtle clues that maybe patients don't read well.

If you look at the next slide, on Slide 25, there are a number of red flags we need to be attuned to, that may indicate that this patient has difficulty reading. They may have trouble completing the forms. If you give them a sheet when they first present to you, and ask them to check off medications, or to give you their past history, their initial set of complaints, they may have difficulty doing that. We may label these patients as being non-compliant, in terms of missing appointments, not showing up for blood work, not going to consultants visits or following up on referrals, when in fact, they could not read the instructions we gave to them, or they didn't understand. These patients sometimes may seem angry or demanding, and they may be the difficult patient that you want to get in and out of the room as fast as possible with, because they're so angry or upset or critical of you, when in fact, they may be embarrassed about the fact that they can't read, or they did not understand what you explained to them. But also, many times, you'll have patients who have difficulty explaining concerns, or have no questions for you, because everything you said to them went right over their heads, or they weren't able to read the documents that you gave to them.

So moving on to Slide 26, what can you do individually to help improve your skills, when you're talking with your patients? First of all, remember that this is a dialogue, so try to sit at their eye level, and listen more than you talk. Many studies have shown with physicians in particular, that patients only speak for about 20 seconds before we interrupt them with another question, or cut them off, assuming that we understand what they're trying to tell us.  If you sit there and listen a bit longer, many times those patients will give you a much clearer picture, and help you understand why they're presenting to you, and what their concerns are. Always allow time for questions, and try to explain things clearly in plain language, speaking slowly and avoiding jargon with patients. Many of you have heard trainings prior to this, about team messaging, and basically what that mean, Slide 27, is that in any encounters you have with your patients, they should leave you knowing three things: What's wrong with me, what do I need to do about it, and why is it important that I follow this plan? It's very important that they understand why you're doing what you're doing with them, or why you're asking them to do certain self care measures when they leave your facility.

On Slide 28, I have an example of how we might apply this in teaching for a patient with a catheter. In this case, we're trying to make sure the patient and/or the family member are understanding how to properly maintain their catheter while they're in the hospital. So the key message is what's wrong. “I need a catheter for a short time to drain the urine from my bladder. In clear, plain, living room language, not jargon, what do I need to do about it as a patient?  I need to make sure that the staff and I always keep the catheter drainage bag lower than my bladder. And why is it important that I follow these instructions? I can get a serous infection if the bag is not positioned correctly.” You don't need to go into retrograde flow. You don't need to go into the pathogenesis of UTIs. They just need to know where to keep the bag positioned, and what will happen if that doesn't occur.

On Slide 29, similarly, if you wanted to make sure that the patient is a partner with you, and monitoring for hand washing technique and the maintenance of that catheter, again, “What's wrong? I need the catheter to drain the urine from my bladder. What do I need to do about it? What's my role as a patient? I should make sure that all staff clean their hands before and after touching my catheter. Why is it important that I follow these instructions, to prevent a serious infection if staff don't clean their hands before caring me?” So this is a way to help get patients engaged, and by doing it with clear, plain language that tells them what they can do, and why it's important that they participate.

On Slide 30, the fourth step that you can do is an individual team measure, is to use a “teach back” or “show me” technique to make sure your patients clearly understand the concept you're trying to share. So, for example, you would ask, “Can you show me how you will manage your drainage bag when you go for a walk in the hall this afternoon?” Or, “I want to make sure I explained everything clearly about your catheter, so can you explain back to me, so I can be sure I did a good job?” That particular phrasing is one that I find really helpful, because it takes the burden off the patient feeling like they just didn't understand (0:24:23 – indiscernible) educators saying, “I want to make sure I did a good job in helping you.” So it's a way of conveying to them that we're partners in this, and maybe their failure to understand is on our end, not on their end, and that takes the burden off of them. Try really hard not to ask, “Do you understand”, because most patients will nod their heads and say yes, even if they didn't understand what we were trying to share with them.

Moving to Slide 31, very briefly, if you're giving out patient education materials that are written, some simple guidelines. Use one to two syllable words, short sentences, short paragraphs, no medical jargon, headings and bullets and lots of white space. And there clearly are a lot of patient education materials out there on the web about CAUTI and about catheter care, but many of them don't meet this criterion, so if you're going to use those handouts, you need to be judicious, and either do a shorter version that appends to these types of issues, or you are selective in how you give that advanced  handout to patients, and make sure that they can clearly read it and understand it before you just default to that type of web handout.

On Slide 32, some additional hints – only use simple pictures. Focus only on key points, and emphasize what the patient needs to do, when they're sick, and they're coming out of the hospital, and especially if they're challenged with reading abilities, it's important that they know what they need to do. The concept that you always hear, of too much information definitely applies here. This is a time where you want scale back; make sure they know what they need to do. Minimize anatomy, physiology, and be sensitive to cultural preferences.

So just to summarize on Slide 33, remember that as many as 35 percent of your patients may not be able to read well. This limits their ability to obtain, understand and act on health information. So, again, health literacy is not just their ability to read, but it's their ability to have access to information, to understand it, and to act on it.

On Slide 34, we know that health literacy, if it is poor, affects the compliance with medical management. It increases their risk of poor outcomes and adverse events. It increases their risk for safety issues, infections, prolonged hospital stays, and it does increase patient and family anxiety, as we send them out the door with the educational tools we hope will allow them to continue their care with self management at home.

On Slide 35, just to review again, that there are barriers to health literacy in terms of complexities of our health care system, patient's reading ability, their age, the emotional overlay they bring when they're sick and in the hospital. All of us also carry along with us our own attitudes, whether we're physicians or nurses, that can affect our communications skills, and culturally on issues on our units can carry over into the way that we communicate with our patients. So we need to be attentive to that, as well. If we can improve patient understanding, we need to do it from both a systems approach, creating a patient-centered unit, that also screens for health literacy issues, and also renewing our own individual commitment as health care providers to improve our own skills in terms of both face-to-face interaction, and the written materials that we extend to patients.

So I'm now going to turn over the second half of this call to Milisa, who will be sharing with you some particular strategies for success in terms of the patients and families we're dealing with on the CAUTI project.

Milisa Manojlovich: Wow, thanks, Barb. That was really very interesting. I know I've got one question already, so maybe at the end, you wouldn't mind answering it. And thinking about health literacy is more than just reading comprehension and regular literacy, so in thinking about maybe some very well educated people, who just don't have a good grasp on health issues, being able to identify who those people are, and helping bring them up to speed. So just food for thought on that one.

But anyway, we're now going to build on what Barb has said, and talk more about engaging patients and families in the health care experience. And we are going to be offering several strategies for success. So for this part of the talk then, we have a few other objectives. First of all, we're going to talk about how to engage patients and families in health care. We are going to describe factors that influence patient and family participation in health care.  And then, we're going to use the strategies to educate these patients and families bout catheter harms.

On Slide 38, if you think about it, we can have two people walk into a hospital and have very different experiences in that environment, especially if one is a clinician, who's walking in to start a shift or to start a work day. And the other one is a patient being newly admitted to the health care facility. So on the clinician and hospital staff side, they know how a hospital works and how to achieve results. But patients are strangers; at lest most of them are. It's a hospital environment, and they don't understand the system or culture. As clinicians, we know who each other are, and we know what each other does; however, patients don't know who different staff are and what they do. Clinicians and hospital staff are very busy – aren't we all? And also, we're under a lot of stress. But patients, alternatively, are also under a lot of stress, but for different reasons. They're in pain. They're uncomfortable. They're vulnerable. They're afraid. They are aware that we are busy, and they may not want to bother us. So given that this hospital environment can be very overwhelming and foreign to patients, we need to take steps to engage patients and families in the health care experience.

On Slide 39, we have a definition of what patient and family engagement is all about. It involves collaborating with patients and families of all ages at all levels of care, and in all health care settings. Patient and family engagement acknowledges that families, however, they are defined, are essential to patients' health and well-being. Collaboration implies a give and take, and it also implies not always insisting that the hospital or system way of doing things is best. So, for example, some patients may have as part of their daily routine to have an evening bath before bedtime. Acknowledging and acting on the patient's wishes in this regard shows collaboration. Also, the definition of family may have to be stretched beyond what we may be used to. Just to give you a quick example, I once had a male patient who had a wife who visited, and he also had a girlfriend who visited at different times than the wife. And to be honest with you, the girlfriend was far more helpful than the wife. The patient was calmer when the girlfriend was present. He was more interactive when she was around. While legally she had no position, her presence during patient education helped keep the patient engaged.

Looking now at Slide 40, we have to think about, or presenting another way of thinking of patient and family engagement as having patients and families being members of the health care team, and also acting as advisors. Many hospitals have patient advisory groups that advise hospital leadership on various issues, but also patients and their families themselves can often advisors and members of the health care team. I once had a young 26 year old male patient who, because of many genetic and congenital problems, he was in the hospital; oh my goodness, way too many times for any one human being to stand  But he had G-J tube and got fed through that, and his mother was by his bedside, and was very clear on the way we, as the nurses, were to give him his medications. We were to draw up vanilla yogurt into a 60 cc syringe, draw up that 60 cc syringe of vanilla yogurt into a warm water bath for about 20 minutes, and then through the G-J tube, insert first about half of the yogurt, then the medicine, and then the rest of the yogurt. As a busy nurse who works in an ICU, I could have said, “No. I'm not going to do this. This is not part of my job. You can do that maybe when you're at home”, or put all kinds of arguments up for why I shouldn't do that, but the bottom line is I recognized that this mother was definitely the young man's advocate. This was the way they did things at home, and to keep her engaged, to keep them having a sense of control and of participation in the care of this young man, it was important, I could tell, that this be continued while he was hospitalized. So that's just an example.

On Slide 41, these are pointers that Barb has already made, but they're worth repeating, because they are so important; yet we easily overlook them.  As soon as you walk into a patient room, have your eyes go to the patient. Make that eye contact. If you're going to look at the chart, read it before you step into the room, or look at it after you've made eye contact with the patient and introduced yourself. You can just tell on their face, “Who's coming into my room? What are they going to do to me next?” And it's important that we alleviate some of the anxiety that Barb alluded to, and make contact human-to-human first of all. Introduce yourself by your name and by your role. This is something that I'm not always aware of, when I go into a patient's room and say, “Hi, my name is Milisa. I'll be taking care of you today.” I don't always say I'm a nurse, and I'll be taking care of you today, so that's always an important part. You also want to introduce any other new people who may come to the room. Make sure that they are introduced by their names, their roles and by what they will do. It's important; it shows respect. It raises the patient's to the level of fellow human being, who we have, as a colleague, perhaps, or as an equal, I guess, is a good way to think of it.

On Slide 42, more pointers on how to engage patients and families – when you first talk to the patient; when you first assess the patient, ask how the patient prefers to be addressed. I know that sometimes I have older patients who don't mind me calling them Billy or Mary or Joe, and others who very much want to be called Mr. or Ms, or Doctor or whatever the title is. And it's important, then, to honor their wishes for how they want to be addressed. Identify families that should be partners in care, according to what they want, what the patient wants. Highlight the main points of the communication tools. By this, I mean be explicit about the best way to contact the health care provider. And also, you can invite the patient's family to use the white board to talk with clinicians. We  have white boards in each of the patient rooms in the medical ICU here at University of Michigan, and I tell the families – there's the dry erase, there's the market. If you want to leave a note for the next shift or the next nurse, or if you want to ask the doctor a question, please asking about and listening to the patients and families' needs and concerns, using open-ended questions, like Barb said, don't ask do you understand. It just kind of invites a yes or no response. You want to make sure that your questions are open-ended. You want to listen to, respect and act on what the patient and family say. You can't always necessarily give them what they want, or address their concerns immediately at that moment. It sometimes takes several steps, several days, but you can at least acknowledge what they're saying, and “Let me get to it.  Let me work on this, and I will get back to you with a progress report.” Help patients articulate their concerns when needed. Again, remember that the health care system is very complex. We can navigate it far better than patients, and sometimes they are raising concerns that we can somehow say in a way that gets the right response better than they can. And then, of course, be sure to obtain communication resources if the advisor or family member cannot understand you. This can be a translator. Sometimes even for patients who supposedly speak English, when it comes to medical terminology, that terminology might benefit from the help of a translator.

On Slide 44, making sure that you help this patient and family understand the diagnosis, condition and next steps in their care. Give timely and complete information. Take every opportunity to educate patient and family, using plain language, as Barb has so eloquently talked about already, and invite the patient or family to take notes. Now, inviting the patient or family to take notes may seem a bit controversial, but remember how anxious these poor people are. Memory and comprehension really take a hit when anxiety is high. Writing notes helps to keep facts straight, and can serve as a reminder to patients and families about questions they want answered.

I have an announcement to make here at this that the Guide to Patient and Family Engagement was released yesterday.  AHRQ, the Agency for Healthcare Research and Quality, has posted this guide on their website, and a link to this valuable resource is provided on Slide 59 of this presentation, so please, at the end of our presentation today, please go and click on the link, and look at the Guide to Patient and Family Engagement. It really has just a ton of useful information.

So now, the past few slides; we're on Slide 45 now, we've talked about offering pointers on how to increase patient engagement in general. But now we're going to zero in on patient and family engagement as a way to prevent CAUTI. 

On Slide 46, we provide some basic statistics on CAUTI. We all know this. There's really nothing new here. We know that it's most common health care associated infection. We know how symptomatic CAUTI increases costs. We know that people who have catheters inserted inappropriately or for inappropriate reasons are most likely to develop CAUTI. And the most common reason for inappropriate catheter use in incontinence. In one study, patient and family requests was responsible for over 30 percent of inappropriately placed catheters. And in our own practice here at the University of Michigan, we have seen, among our research team, this very phenomenon. We know, also, that the risk for developing CAUTI increases 5 percent for every day the catheter remains in place. And it's really because of this information that we're talking about patient and family engagement today. Our hope is that by engaging patients and families, increasing their participation in health care, and educating them on the risks of catheters and CAUTI, that patients and families can make more informed choices, reduce catheter use and help reduce CAUTI.

Slide 47 shows factors that influence patient participation in health care, and these are really in two groups. There are modifiable factors, and there are fixed factors. So looking on the modifiable factor side, patients have various degrees of acceptance of their patient role. Some patients may refuse to participate in decision-making. So for example, studies have shown that only 45 percent of women with breast cancer actually want to participate in decision-making about their breast cancer. The level of health literacy and the extent of knowledge that they have is another modifiable factor, and thanks to Barbs excellent presentation, we now have some strategies that we can use to raise that level of health literacy. Patients have varying levels of confidence in their own capabilities, and to try to help patients increase their causes, provide more information. Patients who are thoroughly informed feel more confident in their ability to make a decision. The type of decision-making required is another factor that could influence patient participation. So for example, if the decision-making is to make a diagnosis, patients are not really interested in making diagnoses, nor are they qualified. However, patients are interested in decisions that analyze the value or utility of patient outcomes. And finally, looking at the use of alternative medicine, patients who use alternative medicine can be more inclined to involve themselves in decision-making than those who don't use alternative medicine.

Moving on now to Slide 48 – so what are some education strategies that we can use for patients? We've talked about engaging them. We know how important that is. We've talked about CAUTI, and how bad that is. So now what can we do? Well, first of all, we need to assess what the patients and families already know about catheters. And you can see how helpful it is to have engaged patients and families before doing any education. Through collaborating with patients and families, clinicians will have developed some idea of the patient/family attitudes towards catheters. You need to assess their readiness to learn. There are some times of the day that are better for learning than others. There are individual factors that contribute to this, as well as system factors. So you can really, to be quite frank, it's a waste of your time to try to teach somebody some of the things when they're just not ready to learn. It is far better to come back later or try to assess, or ask them, “What would be a better time for me to come back. I can see that now might not be good for you. When can I come back and give you some information about this?” We need to ask our patients and family members how they prefer to receive information. Some people prefer a video, because they're visual learners. Some people might prefer a pamphlet, but remember what Barb talked about with health literacy, how some pamphlets are not necessarily the best, and how we need to screen them first. You also might want to think about the benefits of doing one-on-one versus group education. Group education sessions may be well received, because often, patients share common beliefs, and it's easier for them to speak up in a group situation. They're not as intimidated, shall we say, or as fearful of speaking up when they're others around them who have similar interests. 

Additional educational strategies are on Slide 49. They may seem pretty common sense, but they really bear repeating. Taking care of pain control issues, toileting and other needs first, before doing the teaching, making the environment as conducive to learning as possible, whether it's things like turning off the TV or closing the door on a noisy hall. Make sure that the material that you provide is at a fourth grade reading level, remembering the literacy level of the vast of all Americans, I guess. And also chunking information into manageable pieces, and providing one chunk at a time. We often think of education as going into a room, and just doing all of our teaching in one grand session. Really, the best way to do it is to provide a manageable chunk, which is probably no more than ten minutes, and you can offer several ten-minute chunks, spread out across a day or across several days, and before presenting any new information, assess what was previously provided, and reinforce it before moving on to new information. A valuable resource that I wanted to share with you all is a website, It was developed as part of an NIH funded study that was co-led by Drs. Sara Krein and Sanjay Saint here in Ann Arbor. There are many, many sources of useful information for clinicians and the patient and family education part of the website, excuse me. So it would really be worthwhile checking it out, and I have a link there that goes directly to the patient and family educational website. 

Other organizations also have information that is useful for patients and families, so on Slide 51, I have the FAQ sheet that is from SHEA, the Society for Healthcare, Epidemiology of America. And this is also available on line. Now wait a minute. Let's just stop. This is one of the minutes when I really wish we were all together in the room at the same time, because I would hope that looking out on the audience, I could see a bunch of you raising your hands, and saying, “Wait, wait, wait! Is this appropriate for patients with health literacy problems?” And I hope that you would see that really no; this is not ideal. There is not enough white space on this FAQ sheet. The reading level is probably above a fourth grade level. There are a lot of three, maybe four syllable words. Oh my goodness, Barb, this would definitely flunk a health literacy test. So my point here is that a lot of the information that is on the web really needs to be screened for health literacy first. This information can be used. There is excellent information, but it needs to be tailored to individual patient needs.

Similarly, on Slide 52, I have an example of a pamphlet from the Catheter Out website. This information was developed by several co-investigators on the NIH funded study that I mentioned earlier. It has a lot of great information, but again, think about the health literacy level here, and we do really want to give your patients, all your patients this. Maybe some patients could use this information, but for other patients, you really have to think about it and tailor it to their needs. So you may be faced with different scenarios, depending on patients and family wishes or previous experiences with catheters. Remember in the study I alluded to earlier, where over 30 percent of the patients and families actually requested a catheter, so you may be faced with this yourself. And it can be hard to find the right words.

So on Slide 53, starting on Slide 53, we present a series of options that you can use, hoping that if one rejoinder doesn't help to convince patients not to accept a catheter, another one will. The first scenario on Slide 53 talks about a patient or family member who requests an indwelling urinary catheter, because the patient and/or family does not want the patient to get out of bed. I think actually the information on your slide here is not correct. I was reviewing the slides last night in practice for today, and I think the information is wrong. So what it should be here, for this first scenario, things that we can say are things like urinary catheters can be harmful. They can hurt the bladder and cause you to feel pain. Urinary catheters cause urinary tract infections, which could spread to your blood. Urinary catheters can tend to limit your movement in bed and in your room. Limited activity can make you weak. One of the best ways to recover from your illness is to get up and move as soon as the doctor says it is fine to do so. Research shows that sometimes urinary catheters can interfere with your movement, so there are some suggestions like that that you can use to share with your patients. 

On Slide 54 is a second scenario where a patient or family member wants the patient to have an indwelling catheter because they're afraid of soiling linens, or they're afraid of incontinence, or they're afraid of falling. Things that you can say now are things like, “Well, men can use an external catheter known as a condom catheter that is placed over the penis rather than in it. We can offer you a bedside commode if you feel you are too weak to walk to the bathroom. If you're concerned about falling, please let the hospital staff know, because there are extra precautions that we can take, etc. So again, these are different rejoinders or different comebacks that you can give to help the patient and family see from as many different angles as possible, perhaps a catheter is not in their best interest.

And on Scenario 3 then, often times in previous hospitalizations, the patient has had an indwelling urinary catheter, and does not understand the change in policy, so here are a couple of things that you can say, that the risk for infection is significantly lower without the catheter, and also, before, when you were in the hospital previously, we really didn't know how harmful the urinary catheters can be.

So Slide 56 just has the summary of what we've talked about, beginning first of all from our own perspective as health care providers, we forget how frightening a hospital can be. And it's hard for patients and families to engage, when we don't give them opportunities to participate in care. CAUTI remains a major serous health care associated infection, so strategies to promote health literacy and engagement may be an important adjunct in our efforts to reduce CAUTIs. And that's all I had to say, so I now I think it's time for us to open the line for questions.

Operator: Yes, ma'am. At this time, we will open the floor for questions. If you would like to ask a question, please press the star key, followed by the one key. Again, that is star one on your touchtone phone now. Questions will be taken in the order in which they are received. If at any time you would like to remove yourself from the questioning queue, please press star two. Again, please press star one  at this time for questions.

Barbara Meyer Lucas: Milisa, this is Barb Lucas. I also wanted to remind everybody that the slides today's discussion are available on the national website, ontheCUSPstopHAI, so if any of you did not have the slides, they are posted there, as well.

Milisa Manojlovich: Great reminder, Barb, thanks. Did you have any idea about my question about the level of education and the level of health literacy not necessarily coinciding?

Barbara Meyer Lucas: Absolutely. I think that lots of times, people believe health literacy is just referring to reading ability, and it's definitely not.  It's their ability, not only to – it's their ability, first of all, to understand the information, and so that can be, even if they can't read well, if we do well with teaching them verbally and demonstrating, that's fine. They still can understand information that way. It may be tougher for them to obtain information, and again, three components are the ability to obtain it, to understand it and to act on it and make sure all three pieces are addressed.

Milisa Manojlovich: Thanks, Barb.

Operator: Thank you, ma'am.  At this time, our first question is from Kara Mrnak from Glacier Ridge Health System.

Kara Mrnak: My question was – she already answered it, but I couldn't get the presentation slides, so I will try and find them on the website.

Milisa Manojlovich: Thank you, and I believe that the recording of the call will also be there, as well shortly.

Kara Mrnak: Okay, thank you.

Milisa Manojlovich: You're welcome.

Operator: Thank you. Again, if you would like to ask a question, please press star one at this time. We are now holding for questions. Our next question comes from Mary Ellen Anderson from Heart of the Rockies Regional Center.

Mary Ellen Anderson: Yes, I was wondering if you could post the Scenario One slide, the correct one versus the repeating Scenario One and Two?

Barbara Meyer Lucas: Yes, exactly. Yeah, I apologize for that again, and will definitely make sure that the correct one is posted on the website. Thank you.

Mary Ellen Anderson: Thank you.

Barbara Meyer Lucas: You're welcome.

Paul Tedrick: Hi, this is Paul Tedrick with HRET. I just wanted to interject real quickly. We apologize for any confusion. We just had the most recent update to those slides this morning, so if you got your slides any earlier than this morning, you probably got one that had a different slide, but everything is current that's on there now.

Operator: At this time, we have no questions in the queue.

Paul Tedrick: Well, while we're waiting for any other last minute questions to come in, I just wanted to remind everybody to fill out the evaluation for this call. You can find the link in two places. The first will be the link that is included with the slide presentation, and also, I will be sending out a participation report to all the state leads, and they usually turn that around back to you. That will have a link to the evaluation, so we definitely want your feedback, as we usually put out a report called “The Evaluation Examiner”, to let you know what everybody has said, and that we're taking your suggestions into consideration, and what we're doing with those. Operator, are there any other questions at this time?

Operator: No, sir, not at this time.

Marie Mesuga: Hi Milisa, this is Marie (0:52:44 – PH – Mesuga) from the Michigan Hospital Association. I've been listening in with Dr. Lucas. I do have one last question. It's in regards to documenting nursing education, and integrating that into the nursing care plan. Do you have any experience on maybe works well, what doesn't work well in terms making sure as nurses, we are dotting our “i's” and crossing our “t's”, and making sure that we are getting that into our individual (0:53:14- indiscernible) plans?

Milisa Manojlovich: Yean, that's a really great question, and the best thing I can offer is having patients verbalize understanding, doing teach back, having the patient be able to list the important points. Those are the kinds – you want to have some kind of sense in the note that it's more than teaching was done, period. Teaching was done, and the patient was able to verbalize understanding, or the patient was able to raise additional important considerations or that kind of thing. For care planning purposes, it depends on – you can do it in several different ways. So for example, care plans for patient safety will often include plans to try to prevent falls. You can put teaching then related to catheters in that section. There are sometimes care plans for patient safety, so they can be doing in terms of reducing risk of infection, so teaching on CAUTI and catheters can be put in there. And sometimes, you can just do a general care plan on knowledge deficit or increasing patient knowledge, and then do it specifically on a whole care plan on CAUTI. So there are different ways that you can do it, depending on what the overarching needs of the patient are. I don't know if that helps or not.

Marie Mesuga: Yes, that's very helpful.  Thank you.

Milisa Manojlovich: You're welcome.

Paul Tedrick: Hi everyone. This is Paul again. It looks like we don't have any more questions, so I guess we can go ahead and wrap this up early, a couple of minutes early, at least. I wanted to once again thank both Barbara Lucas and Milisa Manojlovich for their presentations today. They were absolutely outstanding. And on a final note, don't forget, everyone, that you can find our slides for today's presentation on our website, and you will also be able to find a link to the guide from ARC that Milisa was referring to during her presentation. That is also up there, as well. Thank you, everybody, for joining us today.  Have a great day.

Milisa Manojlovich: Thanks, Paul.

Barbara Meyer Lucas: Thanks, everybody.

Operator: Thank you. Ladies and gentlemen, this concludes today's conference. You may now disconnect.

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Return to CAUTI Toolkit Implementation Page

Page last reviewed December 2017
Page originally created November 2015
Internet Citation: Health Literacy and Patient and Family Engagement: Strategic Tools to Prevent CAUTI (July 9, 2013). Content last reviewed December 2017. Agency for Healthcare Research and Quality, Rockville, MD.