About Elaine Wittenberg, Ph.D.: Elaine Wittenberg is an Associate Professor at California State University, Los Angeles, where she teaches undergraduate courses in health communication and conducts research in patient-family caregiver-provider interactions, cancer care communication, health care team dynamics, and nurse communication education. Prior to her role at CSU LA, Dr. Wittenberg served as an Associate Professor at City of Hope Comprehensive Cancer Center and the University of Kentucky’s Department of Communication and Markey Cancer Center.
Dr. Wittenberg is a co-founder of the COMFORT Communication Project, a program of research that has built an innovative curriculum for health care providers invested in improving communication outcomes in cancer care. The translation of communication training materials offered through the COMFORT Communication Project also includes online training modules and mobile applications to help health care providers develop a stronger rapport with patients and their families in palliative care settings, and other healthcare environments.
Dr. Wittenberg has published more than 100 journal articles and books on the subjects of palliative care communication, hospice care communication, interdisciplinary health care team dynamics, and family caregiving. She is co-author of three books (Communication as Comfort: Multiple Voices in Palliative Care, Dying with Comfort: Family Illness Narrative and Early Palliative Care, and Communication in Palliative Nursing). All three volumes have been recognized with awards by the National Communication Association. She received her Ph.D. from the University of Oklahoma in 2004.
[MastersinCommunications.com] May we have an overview of your professional and academic background? How did you first become interested in health communication?
[Dr. Wittenberg] I attended the University of Oklahoma for my Ph.D. in the early 2000s, and it corresponded with the field of health communication starting to really blossom. I was taking a course one summer in which the professor divided the topics by lifespan—birth, childhood, adolescence, adulthood, middle age, and geriatric and end of life care, and how this care intersected with communication. No one in the class wanted to do end-of-life. And I thought, “Well, I’m gonna be a teacher’s pet and I’ll say I’ll do it!”
It ended up being a really powerful summer for me, where I had a personal family experience with end-of-life care, and it corresponded with this coursework I was taking, and I saw this huge gap between what research was saying and what I was learning about regarding end-of-life care, and more specifically about hospice care. And then what I was seeing transpire in my personal experience made it that much more acute for me. And I thought, “Wow. That gap right there. That’s what I want to do. That’s what I really want to focus on. My dissertation in graduate school was actually in the area of hospice care, and the difficulty that people have in talking about hospice care, and so ever since then, I’ve been teaching and doing research, since about 2002, in the areas of hospice and palliative care.
I started out being a hospice volunteer and then cultivated my research skills as a communication researcher. I went out on home visits with social workers and psychologists and met people in the home. And then I had a wonderfully unique opportunity to do some clinical observation and work at a VA hospital with an inter-professional palliative care team and learn more “upstream” what end-of-life care would look like. I was in palliative care settings, witnessing real clinical interactions where people were being diagnosed, and I hadn’t as of yet been privy to any of those conversations. It was very acute care and it was also an inter-professional team, and I was interacting with psychologists and chaplains and social workers and nurses and physicians and oncologists. And I got to really explore a lot more of the communication nuances of clinical care. At this point I started working with medical students and getting exposed to what communication training for health care providers looked like and what it could look like. So it was a perfect storm, where institutions of graduate medical education in America were saying, “Hey, we need to train medical students in communication and we need to do assessments. Now, how do we do that?”
And that was when I was in graduate school. So a lot of medical schools started trying to come up with curricula and started OSCEs, or objective structured clinical education for medical students, and a number of different things were happening. So I began to work with a number of medical students and then later to focus some intense time at an inpatient hospice facility, because I wanted to capture the continuum of care from diagnosis onward. I had seen end-of-life care at home, and now became immersed in inpatient hospice facilities where patients go who need acute and palliative care and their family cannot provide care in the home setting. I spent a considerable amount of time with patients as they were dying and with their family members who were saying goodbye. I was also working with nursing students who rotated through the facility in an effort to be exposed to and learn something about end-of-life care. All of these experiences helped shape my current interests and mission as a health communication advocate and co-founder of a program that does instructional programming in this area.
More recently in the last decade, I’ve really focused more specifically in cancer. I’ve been at two different cancer centers across the nation, working with a variety of health care professionals and students, focusing more exclusively on training health care providers about the cancer continuum and the communication across this continuum. I research the communication burden of cancer care, which is the difficulty of talking about cancer, and that can be the difficulty of talking about cancer between the patient and the family caregiver, or within the family unit itself, or between the family caregiver and healthcare providers in their collaboration to provide quality cancer care.
I am now at Cal State Los Angeles, and I’ve just finished my first year. One of my goals in coming to Cal State Los Angeles was to create a curriculum for a new interdisciplinary minor in health communication that can be offered across campus, and a new option for our communication students who are interested in focusing in health communication. We just started a health communication-focused curriculum at CSU LA, where our undergraduate students can focus on it as their major for their undergraduate degree by taking an introductory health communication course and a narrative health communication course.
When I teach communication studies to undergraduates in communication, I’m really focusing on a couple of things. I’m focusing on making sure that they understand what communication is and how to do research in communication—that is, how to define different types of communication, and measure/analyze it using various scholarly methods. When I teach health care providers, my instruction is much more tactical and applied–I’m focusing on specific things that they can say to a patient, or family member, or a team member, questions that they can ask for clinical assessment, or things that they can look for in terms of nonverbal behaviors that can indicate anxiety or uncertainty that needs to be addressed.
[MastersinCommunications.com] You have published numerous journal articles in the areas of palliative care and hospice communication, patient-provider communication, nursing support groups, and effective health interventions. What motivated you to focus your research in nursing and palliative care communication specifically? What have been some of your principal findings in these areas?
[Dr. Wittenberg] Over the last decade, I’ve really started to focus predominantly on nursing, because it is a profession that has a very different communication role from other medical team members. If you compare nurses’ role to the physicians’ role, from a communication perspective the nurses’ role is very unstructured. A physician will come in, have a meeting, give news, have a discussion, and leave. They’re very much in control of the communication environment. The nurse’s role is very different, so they’re very vulnerable in that in their own clinical practice, they’re exposed to questions that they may or may not have the answer to, and they don’t have control over whether or not those questions are asked or when they are asked. They are often asked to interpret what the doctor has said to a patient or family member.
So, they have this “sticky widget” role, if you will, and if you ask nurses, they’ll say, “You know, my primary role is to educate the patient and caregiver.” Health care professionals don’t really receive any training in how to handle some of the difficult questions that they receive about prognosis or diagnosis.
So some of the principal findings that I have made in my own work have centered on health literacy, which is defined as the ability to obtain health information, read health information, understand it, and have access to information. Health literacy is crucial for patients to make informed and sound decisions about their own care. A majority of nurses in our own research report that patients who speak English as a second language face a huge communication challenge. Nurses do not really know how to identify any sort of patient or family caregiver communication behaviors that would indicate low health literacy, yet there is a whole area of research out there on health literacy indicators and different nonverbal behaviors that patients and family caregivers would do that would indicate that they do not understand. What we have found right now is that nurses don’t know what those behaviors are. They do report that they are very uncomfortable working with low health literacy patient populations, and in fact, interestingly, nurses with more experience say they have more difficulty with low literacy patient populations than our less experienced nurses. So there’s definitely some work to be done in that area.
We also see some gaps in terms of team roles, in that nurses are not really sure where they fit in terms of communication roles and responsibilities within the health care team. So the lack of preparation to function as a team is often a barrier for nurses, especially when they are working with an interdisciplinary team–for example, in cancer care. They’re not sure if they should discuss the diagnosis or the prognosis with the patient or family member. And they are often the person on the team who gets the most questions about that.
Research about nurse communication and spirituality is also growing. Nurses report that spirituality topics, questions, ideas, and beliefs about God and afterlife, heaven, are often asked by patients to the nurse. And nurses report that spiritual communication and talking with patients about spiritual concerns is a really important nursing role, but they are not really sure if they are comfortable having those conversations or how to do it. So those are just several of the findings in terms of nurse communication that I have looked into.
[MastersinCommunications.com] Could you describe the various sub-fields within health communication, such as health advertising, patient-provider communication, community education initiatives? How do these sub-fields work in concert to support patient and consumer health? Do students and practitioners typically specialize in a specific area of health communication?
[Dr. Wittenberg] When I teach health communication, I explain to students, that there are four general areas of health communication.
I would say that health promotion is a huge area. So that is about the messaging, health promotion campaigns, how to develop a campaign message that’s going to be effective—for example, the design of smoking cessation programs. How do we convince people to stop smoking? Or how do we educate people about the HPV vaccine? And really the goal there is to evoke change in public opinion or knowledge. So, I have no area of expertise in this area of health communication. I’ve never worked in that area, and it’s not my wheelhouse, but it is nevertheless an extremely important sub-field within health communication.
A second area that is equally as prominent and important in health communication research is the provider-patient-family caregiver interactions. In recent years, we’ve progressed from just considering physician-patient communication to extending our research to the interactions between patients, family members, and their health care providers, because we know it’s more than just the physician. It’s the nurse. It’s the chaplain. It’s the social worker. Research in this area is really aimed at making some change in practice. There are a lot of scholars who are just studying what communication looks like between physicians and patients regarding a certain medical topic. And then from that research, we determine what is working, what is not working, and where the gaps are. Then we can take what is working and teach providers, “Hey, look, this seems to be a really effective communication strategy.”
The third area would be–and this is a growing area–health care interventions that are based on communication. In the last ten years, we have seen a lot of new models coming out where practitioners want to do something a little bit different and communication-based. One example of a popular method in this area is motivational interviewing, which involves supporting and empowering patients and their families.
The fourth important area in health communication is communication technology, in which we have seen a lot more developments: e-health, electronic health, or m-health, mobile health. This is another huge area of health communication that’s growing, and a lot of research in health communication and information technologies is being conducted with the goal of producing change in policy as well, and that is a really exciting area too.
So I’d say health promotion, provider-patient-caregiver interactions, health care interventions that are communication-based, and then the technology factor. And typically researchers will focus on one area of health communication, and more advanced graduate programs, masters, and Ph.D. programs will offer specializations in one or two of these areas. As health communication is also highly interdisciplinary, both scholars and graduate programs in this field will have courses or potential concentrations that cover two or more of the four areas I mentioned.
[MastersinCommunications.com] How are the core theories and methodologies of communication (e.g., quantitative, qualitative, rhetorical) and areas of study such as interpersonal, family, intercultural, and organizational communication used in the field of health communication?
[Dr. Wittenberg] I think most researchers have two or three theories that they really relate to just based on their own personal philosophical assumptions. But I would say a general response would be that definitely quantitative methodologies are the premier methodology in health communication research. A lot of health communication research methods are quantitative—focusing on specific outcome measures or communication dimensions–so communication apprehension, for example, or relational communication. There are surveys that we use as instruments to measure those communication concepts.
In terms of communication theories that are important in health care, almost all theories in human communication have relevance to the medical and public health care setting. The main goal of health communication research is to identify a theory and describe how communication processes are related to health outcomes—that is what makes it interesting and an area worthwhile of study. In my own work, what is particularly interesting to me is the theoretical communication frameworks that help bring about a particular health outcome, whether that is how to cope with stress more effectively, or deciding to sign an advanced directive.
As long as there is some sort of identifiable health-related outcome that can result from the application of a certain communication theory, it can be considered within the realm of health communication. For example, there are stress and coping models that can illustrate how communication can influence the stress levels of a patient or a family caregiver, with the idea that if we improve communication between patients and their care team, we can aid in coping and reduce stress for all parties involved.
[MastersinCommunications.com] Students just starting to explore health communication may not realize the breadth of research opportunities available in this field. What place does health communication research have alongside other types of health-related research–for example, research in nursing and medical practice, pharmaceutical research, palliative care research, etc.?
[Dr. Wittenberg] Last year, I was a new faculty member at CSU LA, learning as much as I could, and the president of our university said, “One of our goals as instructors and faculty is to create an employable workforce.” I really liked that because it made me approach my classes with the mindset of, “What skills can I teach my students that can make them employable, but still have the advanced knowledge of the area from an academic perspective?” What we have really seen in our program here, and what I have observed as a scholar in the field, is a lot of students have a general interest in working in a health care environment, and wish to make a difference in health outcomes. I’ve met students who are interested in promoting healthy lifestyle practices, students who want to be a part of sharing health information with people so that they can create healthy choices or healthy societies. And careers in these areas are available for students who study organizational, interpersonal, and mass communication, as well as other areas of communication, and who are able to connect their studies to health communication scenarios and challenges.
Health communication is an area of research and study that can lead to careers in population health, health education and wellness programs, and organizational health communication within medical centers or companies. We have corporate wellness programs, and careers in communication skills management. A lot of medical schools now have communication training labs. A lot of students who major in health communication go out and manage those communication skill labs in medical and nursing environments, and then there is the whole social marketing aspect, consisting of all the health-related messaging within social media and social marketing. For example, if you work for a nonprofit organization like the American Cancer Society, and you do social marketing for them, that is a health communication oriented position.
A lot of hospitals now have navigator services as well, which are people who are full-time employees who know the ins and outs of the health care structure, and they are assigned to patients and families to help them navigate that health care structure, including making appointments, having your blood done before you go to your appointment or before you go to chemotherapy, where to pick up prescriptions, what you do in an emergency, etc. That is another area where we see people who have been educated in health communication going.
And of course, there is a lot of opportunity in health communication research. A lot of state organizations hire people to fulfill the research component of either a major campaign, or a topic that has been identified as an area that a state wants to do some work in within schools or the community. For example, a campaign or educational program on healthy eating habits for kids, or safe sex practices. Private institutions of medical or public health research are also places where graduates of health communication programs can find work. These are just a few examples of the research and employment opportunities that are available to students of health communication. And as the field continues to expand and evolve, so the opportunities will continue to grow and change.
[MastersinCommunications.com] You are the Co-Founder of the COMFORT Communication Project that provides resources for patients, family caregivers, and health care providers. Could you elaborate on this program and its core mission? What inspired its development, and how does it serve patients, family, and health care providers?
[Dr. Wittenberg] I have been really lucky in my career, in that I have benefited from the mentorship of so many excellent scholars in the field of health communication. My dissertation advisor and major professor at the University of Oklahoma, Dr. Sandy Regan, who’s now retired, but who still works tirelessly in the areas of health communication research, and Dr. Joy Goldsmith, who is a professor at the University of Memphis, were both instrumental in the founding of COMFORT. Joy was a graduate student of Sandy’s, and so was I, and we both graduated at the same time. Over the last 18 years, the three of us have been doing all of our research together in palliative care, and we realized that there is this huge need to translate all of our communication research into practical tools for health care providers, and no one is doing this! So you would find this really great communication research article in one of our major journals, and then you’d sit back and say, “Okay, what did we learn about this?” And from there, the question we asked became, “What would a health care provider take away from this article, and how could they take away knowledge that would improve their clinical practice?”
And we just saw that those connections weren’t being made in clinical environments. So really, COMFORT was born at Joy’s sister’s kitchen table. We just decided we needed to create some sort of project—a curriculum, an anthem, if you will, for what we feel are the main things that providers should know and resources that could help patients and family members. So COMFORT is an acronym, and it stands for the seven basic principles of health communication, which stems from our work in palliative and cancer care. And the goal of our project is that we want to build and develop and create information based on communication training and the research that we’ve done, and we want to be able to offer providers, patients, and families a number of communication resources that stem from our research.
At the crux of it, it is about translating communication research into everyday healthcare. We were funded by the National Cancer Institute, and the Archstone Foundation in California, and we have developed resources for oncology nurses specifically and palliative care interdisciplinary team providers, and really anyone interested in practical health communication tools. We’ve been delivering communication training courses, and we’ve developed two smartphone apps through the iPhone platform. We’ve recently developed an online communication training module for undergraduate health care students, created a new resource for teaching providers how to communicate with low literacy populations, and created a clinical assessment tool for determining specific family caregiver communication styles. We are focusing more on family caregivers and our work now is on looking at how specific caregiver communication styles translate into health literacy needs.
Over the last couple of years, we’ve provided our COMFORT two day communication training course to 500 providers. Those 500 providers have gone home and trained an additional 10,000 health care providers at their home institution. The communication training course is a train-the-trainer program, so you come and you learn communication training skills for yourself, and you also learn how to teach communication to others and how to assess it. So, we’ve tracked a number of providers in the first year post-training, and some of the really cool things that we see are the increased referrals to palliative care, increased education for nurses, and institution-wide training of communication skills, where they’ve implemented part of the curriculum into the new hire orientation or in resident training. And when they make patient care plans, they now include more personalized care plans, because they now know more about the patient or family member.
We’ve seen a lot of improvements to teamwork and team processes and we’re really excited about the momentum that’s being created around the curriculum, and the resources too that have become available to our trainees. It started out as just this curriculum, then it has just exploded. A lot of nursing students, and lot of clinical case managers, are using the curriculum to train others at their institutions, and now they’re starting to do their own research using the curriculum. It has been incredibly exciting.
The unique thing about our program is that it’s all based on communication research, and that each of the seven modules has a backbone of a certain communication theory. That’s unique, because other communication training programs out there are not based in evidence, and they don’t have any theoretical background, so that’s what helps us stand out.
Each letter in the COMFORT acronym stands for a particular element in our program. The C in COMFORT stands for communication that’s based in Clinical Narrative Practice. This includes the health-related communication processes within and outside of healthcare settings that help providers to understand a patient’s story. It also concerns nonverbal as well as verbal communication skills, and how they should complement each other.
Our first O in COMFORT is Orientation and Options, and this is where we teach about health literacy and how to engage in practices of cultural humility. So that the more you understand the patient and caregivers’ cultural background—and culture is very loosely defined in terms of whatever the patient’s preferences and practices are—the better you are able to communicate in a way that acknowledges and appreciates their background and addresses their health literacy needs. A lot of our beliefs about illness stem from our cultural beliefs and practices, and so understanding this and working with it ties in with helping to help patients and families understand the diagnosis, the prognosis, and the procedures necessary for their health. What we’ve really started to focus on is the plain language movement. We teach plain language practices, which is the idea that we should be communicating about health at a sixth grade level. We offer a number of resources that take very high-level medical terms and puts them into layman’s language, and we teach health practitioners to do this when interacting with patients and their caregivers.
The M in COMFORT is for Mindful Communication, and so we teach about how to engage in active listening, how to attend to nonverbal communication, and, perhaps most importantly, to be aware of self-care needs, because health communication and health care practice often requires high patient caseloads, a very high intensity, and a high stress environment, and burnout is a huge topic amongst physicians and nurses. We teach different ways to provide care for yourself, and the indicators of stress at work so that providers can be aware of these markers and address them quickly.
The F in COMFORT is for Family Caregivers, and we teach family communication patterns and that there is a typology where family members exhibit one of four different communication patterns: Manager, Carrier, Partner, and Lone caregivers. We provide resources for providers to adapt to the communication pattern and the communication needs of each type of family caregiver. Right now in health care we teach a one size fits all approach, and a one-dimensional understanding of how families operate and support each other. One common misconception is that the bigger the family, the more support they have, and that’s really a myth. Bigger families have more communication problems because it’s more people to deal with, and more opinions.
The second O in COMFORT stands for Openings, and this is where we identify pivotal points in patient care, and we teach that there are certain things that patients and caregivers can say which provide an opening or an opportunity to address difficult topics in conversation. And in finding those openings a communication strategy is to establish similarity with the patient and family member, and to develop a rapport. So it’s very much relational communication-based. And it comes from a theory of communication called multiple goals theory.
The R in in COMFORT stands for Relating, which is where we really extend this idea of multiple goals and we teach health care providers that we need to address more than just the patient’s physical quality of life, but also the patient and family’s spiritual concerns, social concerns, and psychological concerns, particularly in our cancer population. Clinical depression is very high for both patients and caregivers, and so we teach ways to assess for that and to have discussions about it and to find resources for supporting it.
Lastly, the T in COMFORT stands for Team, and for this last module we teach about team processes, and how to pay attention to and cultivate team structures, emphasizing ways to improve collaboration, and ways to avoid engaging in group-think when it doesn’t serve patient outcomes. The tendency for most health care teams is to engage in group think, which can mean that they miss important nuances in a patient’s condition or care plan. We use group communication theories to help them understand and address this.
[MastersinCommunications.com] Why is health communication such an important and growing field within the health care industry? As a scholar of health communication, how would you say the field of health communication has evolved over the past two decades, and where do you see it going in the future? What role do you believe communication technology advancements will play in reshaping health communication?
[Dr. Wittenberg] It is a huge field, and one that is growing. Health communication research, especially research that focuses on provider, patient, and family caregiver interactions, is incredibly important, and has been receiving more recognition and attention. As I mentioned before, research really shows us where the deficiencies are and points us to ways to make these interactions better. With so much research being produced, it is very common for health care professionals to want to take continuing education courses in communication. In the last decade, many large and influential programs have been established, and a lot of foundations have funded the development of these programs. They focus mainly or exclusively on communication skill training and they are predominantly for physicians (which is why I also believe COMFORT addresses an unmet need amongst non-physician health care providers).
The Academy of Communication and Healthcare offers several training courses every year, and a whole faculty training program. They are one of the more prominent programs. Harvard Medical School has one of the first programs through the Children’s Hospital in Boston, developed by a woman named Elaine Meyer; she developed it 20 years ago out of a need for pediatricians to communicate better with parents, but now it’s exploded beyond that. And then really recently a serious illness care program came out of Harvard Medical School, which received a great deal of funding. This program is now doing research and has a lot of tools and resources available, though I’m not sure whether it is led by a communication faculty member or is communication theory driven, and those are the two things that I am always looking for, as I believe that founding in theory is incredibly important.
Another big program that did come from an academic grounding in communication is at Memorial Sloan Kettering Cancer Center. They have one of the largest, most established communication training labs for their staff as well as students, and it’s very comprehensive and very cool.
Something key that we found in our communication training courses that we offer is that institutions don’t have the resources to pay for their staff to have training, and it’s very difficult for staff to get time away from their clinical responsibilities to go receive training. It’s one of the reasons many programs have also shifted into the online space for health care professionals to have more flexibility with training and keeping their work schedule.
Communication technology is going to continue to be of interest as we grow into more electronic health care records, mobile health apps and devices, and telemedicine and teleconsultations. However, I don’t think it’s going to be the main focus. I still think the bread and butter will be the provider-patient-family caregiver interaction or provider-caregiver interaction, and the reason I say that is because health communication research and interest has really grown in the last three decades because of changes in payment structures. It is not only about optimizing patient and public health outcomes, but also about the health of the health care industry as a whole.
The Affordable Care Act really shifted the way we were doing things. Before we were on a fees-based program, so you’d go in, they would perform something, and then the institution would be reimbursed. Now, after the ACA, it is all about the quality of the interaction, the quality of communication, and the patient’s overall satisfaction with his or her care—it is now a huge part of reimbursement models for health services. If patients report that they’re not very satisfied, then that really hurts the amount that an institution is reimbursed. As a result, we’ve seen a lot of health care professional programs at the undergraduate level now requiring communication and assessment as part of their curriculum, and we see a growing need to have quality communication delivered to patients and families.
If you really think about it, our health care system is not based on there being one hospital in your town and you go to that hospital. More commonly, the scenario is four hospitals within a 20 mile radius, and they are each competing for your services, and so they really need to step up their game and the quality of the interaction needs to be one that you feel really good about, and that’s a huge difference.
The other thing that is really changing is we have a huge focus on team communication skills. About eight years ago, the medical community developed an interprofessional set of core competencies in communication, which focused on teams and team communication and collaboration, so all of that is emerging now and the question remains about how to train health care providers to be quality team members. How do we develop structures that are congruent with team practices and that are going to enhance team practices? There are a lot of really interesting things that are happening now, and the field of health communication has just arrived. There are more scholars who are publishing in medical journals and nursing journals, who are being funded by the National Institutes of Health, who are participating on grant review panels, who are giving keynote addresses on huge policy issues on a national level, who are partnering with health care providers in training and in research, and I think the future is really endless.
We also see more scholars now doing independent work, leading projects, rather than just collaborating on projects. And more health communication Ph.D. programs are appearing across the nation. I think we’re just getting started, and I think that everyone who is a health care professional is now recognizing the value and importance that a health communication scholar or researcher can bring to the table and what they can contribute.
Thank you, Dr. Wittenberg, for your fantastic insight into the field of health communication!