CRN
Cancer Communication Research Center
Blog

Research, Theory and Reality

Baldwin

For the past five years, I have spent my time studying the intersection of health and communication. I have used theory as the lens with which to examine patient-provider interaction, medical adherence, breaking bad news, grief and end-of-life issues. I have read hundreds of journal articles based on studies done on a variety of populations with all different types of diseases: cancers, diabetes, Parkinson's, Alzheimer's, hypertension and more. Interactions are examined from the point of view of the patient, the family, the caregiver, the organization or the healthcare professionals. Populations range from multiple age groups, from young children to seniors. In my own studies, I have interviewed people whose loved one was dying, children who had lost a loved one, and women with breast cancer currently on Tamoxifen regimens.

Beginning on September 26, 2011, my research paradigm changed when I went for my annual mammogram. The mammogram went as usual and I thought nothing about it as I focused on my semester of preparing for my dissertation prospectus defense and teaching a couple of Communication classes.

The first frisson of alarm occurred when my doctor called me the day after my mammogram; getting a call that soon after a test is never a good sign. She told me they had spotted something and that I needed a follow-up mammogram. Still calm, I made another appointment two weeks later.

This appointment was almost the same as the first except the radiologist explained that this was a much higher magnification in order to look at the calcifications. She also said I would be getting the results today. After the test, she directed me to dress and take my things to a room down the hall. It was all the way at the end of the hall and once I stood in the doorway and looked in the room, it hit me. This room, with its two chairs carefully angled at 45 degrees towards each other, its blank walls, and its two end tables with brochures on them, this was a bad news room!

The doctor came in and told me the news, in this case, the bad news. I would need a biopsy to see just how bad. A nurse came and walked me to an isolated part of the reception area. She explained what the procedure involved. I made an appointment for the procedure and left. Once in my car, I spoke to my primary care physician and she recommended a breast surgeon. I spent the next three days of my fall break switching the testing over to the new doctor, having blood drawn, running back and forth between appointments, picking up x-rays and filling prescriptions.

In the middle of my very busy school schedule, I stepped aboard the breast cancer diagnosis train. In the space of about three weeks, I had two mammograms. Filled several prescriptions. Underwent two MRIs. Taught six classes. Went to one out of town conference. Interviewed at the National Cancer Institute as a finalist for their Cancer Prevention Fellowship (yes, I know. Ironic.). Underwent one needle biopsy and finally, one lumpectomy.

I'm not going to dissemble; this process was difficult. And I am one of the lucky ones. I do not have breast cancer. I have atypical lobular dysplasia meaning that on a cellular spectrum with normal cells on one end and cancer cells on the other, I have some abnormal cells. The upshot of this is that my likelihood of getting breast cancer is twice that of another woman and that my medical oncologist wants me to start a five year regimen of Tamoxifen in order to reduce my chances of getting cancer by 50%. It also means that I have had or will have the opportunity to experience patient-provider interactions, breaking bad news, and medical adherence on a very personal level.

Reflecting on this experience reminds me that the patient populations in those studies are based on the real-life experiences of human beings, not just dry statistics laid out into neat tables and figures on a page.

Now more than ever, I see the importance of what we as researchers do. We have the power to find better information for people going through the trajectory of a disease, whether it's during the diagnosis testing or at the end when the disease has run its course. What we do can make a difference. What we do matters.

Paula Baldwin
2011 CCRC Doctoral Fellow
George Mason University

Written by CCRC at 12:46

Managing Uncertainty in Cancer Communication

Uncertainty is ever present in communication surrounding cancer prevention, screening, and treatment.

News media continuously disseminate information and research findings regarding cancer causes and prevention. This constant cycle of new and sometimes conflicting information can be confusing and contribute to a chronic state of uncertainty about cancer prevention recommendations. In fact, the National Cancer Institute's 2007 Health Information National Trends Survey found that almost 75% of respondents were confused and uncertain about which cancer prevention recommendations to follow and 50% were uncertain about the causes of cancer.

Additionally, the U.S. Preventive Services Task Force (USPSTF) recently changed its screening recommendations for breast and prostate cancer, likely confusing many people in the process and leaving many uncertain about how to proceed. For example, the recent breast cancer screening recommendations were not universally adopted across all cancer organizations, which likely contributed to confusion and uncertainty in the public. An earlier post by Minal Patel on October 14 also discussed the importance of communication to address rapidly changing health behavior recommendations.

In the context of cancer care, patients and their family members frequently face uncertainties related to prognosis and treatment effectiveness.

How can health communication and health care professionals best address public and patient uncertainties? I sat in on a course this past fall that discussed theoretical approaches to understanding uncertainty in a variety of contexts, including health and illness, which provided some guidance.

The literature provides various definitions of uncertainty. According to Brashers (2001), "uncertainty exists when details of situations are ambiguous, complex, unpredictable, or probabilistic; when information is unavailable or inconsistent; and when people feel insecure in their own state of knowledge or the state of knowledge in general." Theoretical discussions of uncertainty have historically suggested that people typically attempt to reduce uncertainty because uncertainty leads to negative emotions, such as anxiety, and that in order to reduce uncertainty people seek information. However, the current state of research on uncertainty has shifted from an emphasis on uncertainty reduction to uncertainty management. In addition, people can feel uncertain even when they have a lot of information about a topic. In fact, when people have too much information, they may end up feeling overwhelmed and helpless rather than empowered.

It is also likely that as some uncertainties are reduced, others will surface. Therefore, addressing uncertainty is not always a matter of reducing it, but is frequently a matter of managing it. It can also involve managing resulting negative emotions, such as anxiety and fear, as well as allowing the opportunity for hope and preventing fatalism.

Managing uncertainty in patients and the public

Managing uncertainty is clearly important in each phase of the cancer continuum, including prevention, screening, diagnosis, treatment, survivorship, and end of life.

A monograph produced by Epstein and Street in 2007 for the National Cancer Institute (NCI) emphasized the important role of patient-centered communication between clinicians and cancer patients in helping to manage the many uncertainties faced by cancer patients and their families. Patient-centered communication considers patients' needs, perspectives, and individual experiences; provides opportunities to patients to participate in their care; allows clinicians and patients to come to a shared understanding of the problem; and enhances the patient-clinician relationship.

To successfully manage uncertainty, communication between clinicians and patients should acknowledge uncertainty while maintaining hope, recognize that uncertainty often cannot be eliminated, and help the patient effectively cope with uncertainty by providing information, emotional support, and cognitive strategies for dealing with the anxiety associated with uncertainty. Epstein and Street suggest that patient outcomes may be best when clinicians directly address uncertainties with patients rather than acting as if they do not exist.

Many of the same strategies suggested for managing uncertainty in patient-clinician interactions would likely benefit others communicating cancer information, such as community health educators and health journalists. A frequent criticism of news coverage of health is that it tends not to discuss research findings in the context of previous relevant studies, so that people can make informed decisions based on the information available. A commonly suggested way to improve news media coverage of cancer is to increase the degree of uncertainty it conveys. If the degree of uncertainty is increased in individual news stories, then the variation in messages across time will appear to be reduced. In other words, greater uncertainty within stories about research findings will soften the "yo-yo" approach to cancer coverage and prevent the confusing reversals that play out in media coverage of cancer causes and prevention behaviors. Contrary to what one might suspect, including expressions of uncertainty such as hedging in cancer news stories has been found to have a positive effect on perceptions of the credibility of journalists and scientists.

Finally, it is important to remember that education level and health literacy level also play important roles in the process of understanding, making decisions, and acting on health information.

References:
Brashers, B. E. (2001). Communication and uncertainty management. Journal of Communication, 51, 477-497.

Susana Peinado
2011 CCRC Doctoral Fellow
University of California, Santa Barbara

Written by CCRC at 12:48

A Call to Action

There has been a lot of discussion about Dr. Don Berwick's speech he recently gave at the annual conference at the Institute for Healthcare Improvement. As the former administrator for the Centers for Medicare and Medicaid Services, Dr. Berwick sought to improve the current Medicare/Medicaid system by increasing the quality of health care and to also cut costs (read the New York Times article here). However, in his short 17 months as administrator, he was not able to accomplish this. What he did accomplish, though, was bringing about a new way of thinking about the health care system and the potential it has to be improved.

In his speech, Dr. Berwick discussed his ideas on how to change the health care system in this country. He addressed some of the following points: putting the patient, especially those who are disadvantage, first; doing things at scale; and mobilizing on a local level. Most importantly, he gave those in the health care field a much needed call to action.

I thought of Dr. Berwick's call to action after reading Patrick Dillon's blog from December 14. Patrick discussed how several of his students were unaware that health disparities exist, and they are not alone. Dr. Berwick's point about putting the patient first reminds us to treat people from all walks of life and at every stage of life. Additionally, Dr. Berwick discusses how rationing health care hinders improvement. He notes, "It boggles my mind that the same people who cry 'foul' about rationing an instant later argue to reduce health care benefits for the needy, to defund crucial programs of care and prevention, and to shift thousands of dollars of annual costs to people-elders, the poor, the disabled-who are least able to bear them." There must be an awareness brought to the disparity in treatment between the young and the old, the rich and the poor; but beyond creating awareness, there must action. As he stated, "The good news: the possibility of change has never been greater-not in my lifetime. The bad news: if it's going to be the right change, the burden is yours."

I feel like those who are in public health, especially the 2011 CCRC Doctoral Fellows, have a lot to offer. From Rui Shi and Rannie Teodoro's work with social media; to Kisha Coa and Minal Patel's research with behavior change and disease management; to Rachel Faulkenberry's work with health literacy; to Adam Richards's expertise in communication and Paula Baldwin's contribution to the field of palliative care; there is a lot of potential for change in our health care system. And as long as we have people like Patrick Dillon teaching future generations that disparities exist, perhaps in time, Dr. Berwick's vision will come to fruition.

Michelle Henton
Senior Research Assistant, CCRC
KPCO

Written by CCRC at 12:52

Guide for Holiday Cooking - or the different ways Network Analysis can help your life

There is no better time to bring you a guide on how flavors should be combined in your kitchen than the Holiday Season. Network analysis - an excellent tool for dissemination and implementation research, organizational science, and more is now debuting in gastronomy - giving you an explanation for why certain flavors pair well with each other. As a special holiday post, please also accept our best wishes to you and your loved ones for this Holiday Season.

http://www.nature.com/srep/2011/111215/srep00196/full/srep00196.html

Best wishes,

Borsika Rabin for the the CCRC team

Written by CCRC at 12:55

During the past semester, I have had the distinct pleasure of teaching an upper-level undergraduate course in health communication. A few weeks ago we completed a unit on communication and health disparities. As part of this unit, I invited Dr. Brian Rivers (an Assistant Research Faculty Member in the Department of Health Outcomes & Behavior at Moffitt Cancer Center) to perform a guest lecture during our class session. For nearly an hour, Dr. Rivers presented information related to health disparities across a wide range of health measures, including access to health insurance; rates of infant mortality; life expectancy; end-of-life care; and the prevalence of specific diseases such as diabetes, hypertension, and HIV/AIDs. He also spoke about his own work related to prostate cancer screening and health disparities (see http://www.insidemoffitt.com/Doctor-Rivers-Prostate-Cancer-Health-Disparities-Video.htm).

As the presentation came to a close, Dr. Rivers clicked to his final slide, smoothed his nave blue tie, and stepped to the front of the lectern. He clasped his hands together and took a deep breath. "More than anything, I hope this presentation has allowed you to understand that although the overall health of our nation has improved over the past several decades, inequities in health and health care continue to persist among racial and ethnic minorities. I also hope it inspires you consider how you might work to address these inequalities in your own unique ways."

As was the custom following guest lectures in our class, I asked the students to respond to the presentation. As I moved to the front of the class, I noticed one student eagerly waving her hand in the hand. "Go ahead," I said, gesturing toward her.

"These readings were difficult to get through this week. I had no idea that there were such extreme differences in health experiences of people here in the United States. It's even more troubling that when I mentioned it to my family and friends, they seemed just as surprised as I was."
As she finished, another student's hand shot into the air. "I agree. I mean it seems like you never hear about this kind of stuff," he said, shaking his head. "How are we supposed to do anything health disparities if people don't even know they exist?"

****

The students in my class were not alone in being unaware of the pervasive health disparities in the United States. The landmark Institute of Medicine (2003) report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care suggested that efforts were needed to increase awareness about racial and ethnic health disparities. A recent study by Benz, Espinosa, Welsh, and Fontes (2011) suggests that awareness of health disparities is still lacking. The study reported that only 59 percent of Americans in 2010 were aware of racial and ethnic health disparities. This is alarming when one considers that increasing awareness is "a necessary first step toward changing behavior and compelling action" aimed at eliminating health disparities (p. 1860).

Consistent with the reasoning that increased awareness of health disparities may promote increased action, I was amazed how learning about heath disparities galvanized many of the students in my health communication course. Nearly half of the students decided to examine a health disparity for their final course project (one has discussed continuing the projects for an Honor's Thesis). Other students have started working with various student organizations to begin planning an on-campus event to raise awareness about health disparities. Finally, several students have simply committed to telling their friends and family about this important issue.

The recognition of the magnitude of health inequities in the United States has made addressing these disparities a significant public health priority among researchers, health care providers, policymakers, and government agencies (Thomas, Quinn, Butler, Fryer, & Garza, 2011). Despite these efforts, an unequal burden of illness, death, and lack of access to quality health services continues to fall on racial and ethnic minorities. Increasing awareness is not sufficient on its own to address all of the complex factors that contribute to health disparities (Benz et al., 2011). It does, however, represent an important first step toward achieving health equity. Moving forward, I hope we can all commit to continue spreading the word about health disparities.

For more information:
- Benz, J., Espinosa, O., Welsh, V., & Fontes, A.. (2011). Awareness Of Racial And Ethnic Health Disparities Has Improved Only Modestly Over A Decade. Health Affairs, 30(10), 1860-1867.
- Centers for Disease Control and Prevention. (2011). CDC health disparities & inequalities report. Retrieved from: http://www.cdc.gov/mmwr/pdf/other/su6001.pdf
- Institute of Medicine (2003). Unequal treatment: Confronting racial and ethnic disparities in healthcare. Washington D. C.: The National Academic Press.
- Thomas, S. B., Quinn, S. C., Butler, J., Fryer, C. S., & Garza, M. A. (2011). Toward a fourth generation of disparities research to achieve health equity. Annual Review of Public Health, 32(1), 399-416.

Patrick Dillon
2011 CCRC Doctoral Fellow
University of South Florida

Written by CCRC at 12:56

Tags

Latest Comments

Archive