Talking About Health; Why Health Communication Matters

Why “knowing” is not enough to support doing?

June 20, 2010

How many of us don’t know that overexposure to the sun causes skin cancer? Or that eating too much and exercising too little causes weight gain? Or working too much and having too little fun contributes to depression? Or getting too little sleep and worrying about things we have little to no control over leads to exhaustion and stress?

Too often, health messages are about the “knowing,” when–quite often–we already know facts about health. What we don’t know is “how” to do the things the facts suggest we should do. As I discussed in the last post, when we talk about health, we often talk about our family, our work, and the things we do to have fun. So what we want to talk about and what we hope others will share with us is the “how to” meet our employer’s expectations and not work too much, sleep too little, and worry about meeting our obligations. How to have fun in the sun and not get skin cancer. How to adapt our family life to the recommendations that our doctor makes at an annual check-up.

I have adopted the practice of asking my doctor the “how to” question. For example, my OB-GYN noted a two pound weight gain at my annual check-up and cautioned that if I gained two pounds every year, that would be quite bad for my health. I said that I had changed my diet and exercise to decrease my cholesterol levels and that I had noticed a bit of weight gain. I inncreased how many nuts I eat, including almonds and walnuts, while decreasing animal proteins that I eat. It seemed to help with levels of bad cholesterol…which had decreased…but also added calories to my diet.

“It is just all about being active enough to use the calories you consume,” she said. “How you do that is up to you.”

Fair enough. But to support doing that, I need to know “how to” do it…one reason an entire industry of diet foods delievered to our homes exists and one reason that so many online sites offer the experiences and stories of so many of us talking about…”how to” do what we already “know” we should do…

Why don’t we talk about ‘health’ when communicating about our health?

June 11, 2010

A lot of attention is given to patient stories. Most online health sites have a link to patient stories. Why? Often because the stories make content more ‘real’ than numbers and statistics alone do.

When we tell our stories, we can describe how we feel, what matters in our life, things about family, what kinds of things we do for fun, and how we earn a living. Implicitly, we talk about these things because we value our good health, and being healthy comprises one important goal. But being healthy often needs to be adapted to our family, recreational, and occupational lives. And so, we talk about these topics, implicitly hoping for conversation about how to adapt to possible health risks while sustaining these other areas of our lives…

Who owns our genetic information?

119_1944a May 29, 2010

There has been some discussuion in the media about some pharmacies considering and reconsidering whether to offer genetic testing for purchasing. Why would we want to know about our genetic make-up when it comes to health? Why would anyone care if we paid money to purchase genetic testing without our doctor recommending it? How should we be talking about this issue?

Knowing information about our genetic might be one more way to promote our health. As we discuss across the entire book, Talking about health, this era of personalized medicine makes it possible to predict our risk for some conditions. However, as we have discussed in this blog before, knowing that we have genetic contributors to heart disease or that we do NOT have these contributors does not determine that we will or will not get heart disease.

So one reason that there may be concern about giving us access to genetic information through personal purchasing power is that having the test may give some of us a false sense of security and some of us a false sense of ‘doom’ about risk for disease. We may not use the information in ways intended. We may lose sight of the information being just one indicator of possible risk. Remembering that the era of personalized medicine is NOT about single genes predicting absolutely that one will get a disease is a critical part of realizing any benefit from knowing genetic information about our health.

Another often discussed issue is ‘who owns our genetic information?’ While this has been frequently discussed based on concerns about health insurance, we hear less discussion in the media about disclosure to family members. Once we know our genetic information, who should we share the information with in our families? After all, any information we have has some relationship to the biological make-up of other members of our biologically related kin. Should there be any responsibility for telling others about what we learn? Who decides?

We also hear no conversations about the fact that tests can be ‘wrong.’ How should results be treated? If we are found to have genetic predictors of increased risk for heart disease, for example, should we be tested again to be sure the results were accurate? Tested with the same test we purchased? If we did not have positive test results, should be be tested again to be sure that we don’t have the genes? What are the levels of accuracy associated with these tests? How much faith can we place in the results? Does our own human error enter into the equation?

So, yes, we need to be talking about these issues alongside our conversations about making genetic testing available to use in our local drug stores…..

What is the meaning of uncertainty when it comes to illness?

April 21, 2010

Communication and uncertainty go hand-in-hand. Many of our theories in communication focus on uncertainty as a reason to communicate. In these cases, we usually focus on communicating to reduce uncertainy. We talk about how we use cues from others–such as how they dress, the hair style they wear, the way that they gesture, and even how fast or slow they talk and their accent–to decide how much we are like another person. In these ways, we are using nonverbal information to reduce our uncertainty about talking with someone.

In already established relationships, we also experience uncertainty. Relational uncertainty may happen because we don’t know if our friend or family member is being ‘honest’ about whether they think we should take the job, go back to school, or in a million little day-to-day situations–like what to wear, what to eat, or what to do with our free time. We often try to reduce our uncertainty in these sitautions as well by communicating. ‘What do you want to do?’ ‘What are you doing to wear?’ ‘Do you think I should take this job?’ ‘What about the fact that we can’t sell the house right now?’ ‘They didn’t offer me any moving costs–can we afford it?’ So relational uncertainty emerges in a thousand different ways as part of having relationships. And it is a challenge to imagine how to balance the relationship needs and well, live our lives. So what happens when into the mix we introduce illness?

A diagnosis, whether it is terminal or not–as suggested by one of the participants in my last post–may spark the motivation to communicate. The diagnosis might be for a chronic condition such as heart disease, high blood pressure, high cholesterol, diabetes, or even HIV. It might be a broken leg or a sprained neck. Into each and every one of these and possibly thousands of other diagnoses enters uncertainty. “Illness uncertainty” is a big part of the uncertainy. But “relational uncertainty” is introduced into a diagnosis as well. To improve our communication about health, keeping both kinds of uncertainty in mind may help.

A diagnosis often leads us to want to reduce illness uncertainty about such things as ‘what is it,’ ‘what does it mean for my life,’ ‘how long will it last,’ ‘how will we treat it,’ and a host of other questions that may lead us to seek information to reduce our illness uncertainty. Sometimes, there will be no answers as we seek information, and so we have to “manage” our illness uncertainty by knowing that we have done what we could to answer our questions and perhaps by joining support groups online or in other ways putting ourselves in a position to keep up-to-date with any new information. What we don’t often think about is that in some situations, “increasing” our illness uncertainty may offer the most hope. As an emotion, hope let’s us look forward to a future that is a positive one and where we see ourselves able to achieve important goals. When we do not have certain information about our illness, that may provide a path toward hope if we frame it based on such comments as, “the doctor told me, ‘I don’t see any expiration date on you'”,–meaning that there is no answer to a question framed as, ‘how long do I have to live’.

In some of my past research, I have talked about the acute phase following a spinal cord injuury. During this phase, patients and families often are most reassured by communication that increases their uncertainty about the course of the diagnosis. Doctors not knowing whether a patient will walk again is a hopeful thing. At the same time that the patient and family experience hope related to increasing their illness uncertainty, they may experience sadness and fear and anger about a sense of increasing relational uncertainty. This is a case where friends and family may be very supportive in the beginning but seem to be less so over time. Communication may need to be more direct to reveal what is happening. If a friend asks, ‘what can I do for you?’ and the ansswer is always the same–‘nothing’–the friend may quit asking and quit coming around. There are many reasons that we don’t ask for help–and we can discuss those in the coming days–but if we remember that it may increase a friend’s uncertinaty about the relationship if we say ‘nothing’ and we obviously need help. And their lack of helping when we obviously need help may in turn increase our uncertainty about them. And both may contribute to illness uncertainty in negative ways–relating to a lack of tangible and emotional support–perhaps we can stop the spiral and communicate about our health and our relationship in more fruitful ways… not always to reduce uncertainty… but at least in ways to manage it.

What do you say to a loved one just diagnosed with terminal cancer?

122_0562 April 13, 2010

Maureen Keeley and Julie Yingling are authors of the award-winning book, Final conversations: Helping the living and dying talk to each other. Through interview data collected from some of us who have gone through the experience of knowing that a close relative has received a terminal diagnosis, Maureen and Julie provide a table of contents that introduce the important topics they address in the book. Among these–telling our loved one, “I love you.” While saying the words is important, giving clear messages that leave no doubt about the love that has been shared is emphasized in the authors’ summary of what interviewees told them. Telling a parent that she is loved, that you will do your best to live the kind of life she would be proud of, and that you are grateful for the time you had to to share together…these are messages that we want to say explicitly while we have time to do so.

Keeley and Yingling remind of us that a terminal diagnosis does not mean that your loved one is dead–yet. He or she probably wants to go on taking care of everyday business as long as possible. So when your loved one says that he wants to hear about your life, he really means it. There may not be a lot of opportunities left for you to tell him about the everyday and ordinary parts of living. What did you do at work? Who did you talke to? What did you eat when you went out to dinner last night? Where are you planning to go on vacation this year?

Simple joys…baking cookies for a loved one and eating them with a cup of herbal tea or coffee. Sitting near a window that looks onto a view that is a favorite one. One of my aunts that I felt very close to died from ovarian cancer. I remember her wanting to continue to do some work from the office…right up until she died. Her employer brought some of the bookkeeping to the house and she worked on it when she felt like it. We didn’t say to her, “Why are you spending your time that way?” She wanted to do it. That was enough. An uncle who died from lung cancer wanted to go on a camping trip. It meant getting a trailer that he could be comfortable in so that my aunt could take him on that final campout.

It also may be the time to talk through some things that have been avoided in the past. We don’t have just positive feelings, even about the relatives that we feel close to. A conflict long buried might be on our minds. An invitation to a loved one such as, “Do you want to talk about it?” may open the door to clear the air. We shouldn’t force the invitation, but provide a space for a conversation that many times will be a relief to the living and the dying.

The authors also emphasize how important it can be to say that a connection to a loved one lives on…even when they do not.

What can maps tell us about health?

115_04112

March 13, 2010

A map is a wonderful example of a visual health communication tool that tells us so much with so little text. The notion that “one picture is worth a thousand words” more than applies. Mike Mackert discusses a new resource, a map, on his health communication research blog [http://blog.healthcommunicationresearch.com/2010/03/new-interactive-tobacco-map.html]. If you click on his link to the overall map resource, you can use a slide bar on the right side to display which states have passed which laws and policies relating to tobacco and smoking. A great example of giving citizens and elected representatives points for comparison. From a communication perspective, several thoughts come to mind.

First, this is a great way to illustrate a role for visual literacy as part of health literacy. In terms of our understanding, when we have a visual image to tell us something, it saves us a step in our thinking and understanding. We don’t “think” in words. For example, when I say “snow,” you “think” an image — something likely related to your own experience with snow. You do not think “s”–“n”–“o”–“w” and try to get meaning from thinking and forming these letters in your head. When you see a picture of snow, there is an instant connection to your mental picture.

Second, this process I have just described assumes, of course, that you have experience with snow to draw on in forming a mental picture. I am reminded of a test that my daughter was given in order to start public school “early.’ Her birthday is September 14th. She thus missed the September 1 cutoff date. We requested that she be tested to start, as we felt that she was more than ready. The test validated our opinion. It also showed that she could not give a name to a picture of a “snow shovel.” She was born in Tucson, Arizona, and she had never seen snow let alone a snow shovel. So, she could not make a match in memory between the picture and a name or label for it.

So, third, any visual form used to communicate–and there are many in health communication, ranging from photos to bar graphs to pie charts to maps and more–depends on a user’s ability to connect experience and skill to an intended meaning. In the case of the map Dr. Mackert identifies, it aids the user who moves a mouse over the geography by having the names of different states ‘pop-up’ to help a user who may not remember the name or location of any given state. It offers a series of folder options across the top for a user to click on, so that there is not too much information presented in any one map. It does rely on a number of colors in the maps that are somewhat close on a color wheel and might be difficult for some users to distinguish. It also identifies two sources of the information at the bottom of the map that are not easily navigated to gain insights about the method used to gather the information. It is, however, what policymakers often seek to help them wade through all the mounds of information related to decision-making.

Maps can, therefore, tell us what is happening in one location as compared to another, giving us a location hypothesis or explanation for health and health care…

What is a “competent” health communicator?

119_1944a February 9, 2010

I received a ‘smileworthy’ email from my friend and colleague, Ed Maibach, on Monday. He had received word that one of the articles we co-authored had been named to the 50 most read articles in the Sage journal, the American Behavioral Scientist. In fact, the article is #5 on the list, as you can see if you visit http://abs.sagepub.com/reports/mfr1.dtl

The article’s title, “Competencies for the health communication specialist of the 21st century,” gives some idea why it has been one of the most read publications. The importance of this area both theoretically and in application has been widely recognized. This has contributed to a surge in adding health communication classes to undergraduate and graduate programs around the world. And in adding these programss, the debate continues about the focus of education and training.

As I looked back at the lessons learned to develop the article, I realize that many of these competencies are ones that we all need in order to successfully navigate the health information that might only be described as overwhelming in quantity and sometimes questionable in quality. One of the competencies that health communication specialists may choose as a focus focuses on gaining access to and using various electronic databases. As we’ve discussed on this site before, we all need to harness the skills to do this. One of the most important issues remains the ability to identify the sources of these messages in order to consider the validity of their claims.

The emphasis in the article reflects the importance of understanding the role of both media and interpersonal communication on our health habits. To continue the conversation from yesterday, we too often do not seek formal health care because our family or friends don’t support doing so. And we frequently substitute care from our support networks for formal health care. In fact, one of the roles that many faith-based organizations assume relates to providing support to members sruggling with illness or recovering from events that limit their well-being. This may include injuries on the job or the death of a loved one.

Perhaps one of the most surprising and least considered areas of health communication competence relates to impression management. This, too, flows from the knowledge generated from research and practice in interpersonal communication. I reflect on my own hesitation to reveal my failure to behave in ways that I know I should. I want others to form a positive impression of me and to like me. And it carries over into health realms. Besides wanting to present our own best image, we often–with little thought–help others project their own best image. So we may fail to ask our doctor about something we thought we would be talking about in our appointment because we are thinking that to do so might seem to imply that we are ‘criticizing’ our doctor.

Other competencies related to the 21st health communication specialist that we identified more than 15 years ago that all of us will benefit from include media literacy skills associated with understanding gatekeeping relating to content. As discussed in the former post, media stories about medical research likely appear far ahead of therapies to benefit our well-being related to the research findings. Understanding that media seek to give us novel content supports our ability to reflect on the gap between a story and its translation to our care.

So a competent health communicator likely begins with our intention…to understand, to reflect, and to participate in making decisions about our health in informed ways guided by our efforts and experiences. 119_1914

Why don’t our doctors recommend ‘it’?

117_1749 February 8, 2010

The fourth chapter of my book, ‘Talking about health…why communication matters,’ provides some answers to the question, ‘Why don’t we get care?’ The discussion goes beyond the vital limitation–we don’t have access–to consider what happens when we do have access and we still don’t get health care.

The first topic discussed in response to the question, ‘why don’t we get care’ is: our doctors don’t recommend it. There exist several answers to the question, ‘Why don’t our doctors recommend it?’

One reason our doctors don’t recommend a treatment that we might expect reflects the reality that no treatment yet exists. The media story bringing to our attention a scientific discovery published in a leading journal such as the Journal of the American Medical Association or Lancet or the New England Journal of Medicine may set our expectation that the discovery translates to new treatment. It is a long journey between scientific discovery and health care.

The National Institutes of Health–which includes the National Cancer Institute, the National Eye Institute, the National Heart, Lung, & Blood Institute, and others [see http://www.nih.gov/icd/index.html ] emphasizes the importance of translating discoveries to benefits for the people. But the process follows a series of steps. So, in short, our doctor cannot recommend what is not yet available. Still, it never hurts to ask in case there might be some clinical trials going on in efforts to develop treatment based on the new science. And, it can’t hurt to do a bit of sleuthing of our own on the internet to see whether the media story relates to the possibility for new treatment.

Other reasons that doctors may not recommend a treatment have to do with such realities as: time slips away during an appointment and it just didn’t get brought up. Or, the doctor planned to talk with you about a treatment but–forgot. Perhaps your doctor even said in your last appointment that she would talk with you about some other options for care at the next appointment, but then doesn’t. In all of these cases, if it is important to you, bring it up. These are ways that communication can indeed matter when talking about health.

What is personalized medicine?

130_0626 January 28, 2010

Personalized medicine is health care treatment or therapy tailored to our own personal genes.

Since the mapping of the human genome was completed, great strides have been made in medical research to link various gene variants to common health conditions. These include heart disease, diabetes, and cancer.

In the past on this blog, I have talked about the importance of knowing our family health history. In part, knowing my family health history and telling my doctor about it may guide a doctor’s decisions to recommend testing for some of these genetic contributors to health and disease.

There are several realities associated with personalized medicine.

First, we have more research linking specific gene variants to specific health conditions than we have medical tests to identity the presence of these gene variants.

Second, sometimes the media reports the results of ongoing or newly published research to link gene variants to health conditions long before the results have been translated to health care, including genetic tests and treatment.

Third, when a tests exists for a gene variant linked to a health condition, there still may be no treatment that is any different for someone who has the gene compared to someone who does not have the gene. If my doctor recommends a genetic test to guide diagnosis of my condition, I ask if having the test results can make a difference in my treatment. For me, if the answer is, ‘no,’ then I generally would be unlikely to be tested. For now, having my medical record indicate that I have a gene variant linked to a health condition might make me appear to be someone at higher risk for poor health related to that condition. In an era linked to efforts to reform health care, until matters are more settled, I do not personally plan to give anyone a reason to limit my health insurance coverage.

Fourth, if I asked my doctor whether having a genetic test result would lead to the possibility of different treatment, and the answer was ‘yes,’ I would then ask: ‘what are the possible options?’ I would ask this before agreeing to be tested because some options for treatment would be ones I would not choose. So, if all that is ‘gained’ by having the genetic test results were options that I found to be unacceptable–prophylactic surgery or abortion, for example, in my case–then having the information would not be a benefit for me.

Fifth, but if I asked my doctor whether having a genetic test result would lead to the possibility of different treatment, and the answer was ‘yes,’ and I asked about the treatment options and found them to be acceptable, I would be likely to agree to a genetic test. I would then talk with my doctor about these options and make a choice that might well be based on my genetic make-up–a result of personalized medicine.

HPV, HIV, HBV…and more

January 8, 2010

I am working on a project designed to understand how college students think about HPV. I have learned that the human papillomavirus — HPV — is confused with HIV by some male college students in this project and that some females confuse it with HBV — the hepatitis B virus…

The media has covered the HPV vaccine and, of course, we have all those direct-to-consumer ads appealing to the ‘I want to be one less’ angle. What isn’t clear in many of these stories and ads is that HPV is transmitted by skin-to-skin contact. That is why genital HPV cannot be guaranteed to be protected by use of a condom during sexual intercourse.

The HPV vaccine is, of course, not designed to prevent HIV. A female who has completed the series of HPV shots likely has about five years of protection from HPV. She is not protected from the human immunodeficiency virus — HIV. Males who mistake the two conditions, HPV and HIV, may wrongly believe that the HPV vaccine protects her and him from HIV and thus feel less inclined to use a condom to prevent HIV. That is a serious mistake.

The incidence of head and neck cancers over the past decade has been found to be related to oral HPV. College males who report engaging in open-mouthed kissing have been found to be more likely to test positive for oral HPV. But this is not the only path for transmitting oral HPV. As with genital HPV, the skin-to-skin contact provides a transmission route.

There is a vaccine for HBV. HBV affects the liver and is transmitted in ways that are similar to HIV, including blood and bodily fluids. It really can be a matter of life and death if we fail to keep straight the differences between these three and our actions to prevent them.