Talking About Health; Why Health Communication Matters

Why does communicating about health matter?

January 10,2011

When talking about health, we form ideas about responsibility… Who do we blame for our cold, our cancer, our heart disease, our low vision? At one end of the blame continuum is personal responsibility and at the other end — societal responsibility. In between, we have friends, family, co-workers, and media –including advertisements that make it seem that if we could only take the right medication, all would be well. Or, movies that make it seem as if there are more solutions available to us than there are in reality. Or news reports that do the same…

What a surprise when I walked into my classroom for the semester and found a student desk positioned near the podium with a sign posted overhead: FOR STUDENT WITH SPECIAL NEEDS. DO NOT MOVE. The same message was taped to the desktop. Hmm, what’s wrong with this picture? What does it communicate? Who and what is responsible for a student not using the desk?

What happens when mothers talk to daughters about HPV vaccines?

January 6, 2011

This will not be the first time I have focused on HPV… In fact, about a year ago, I posted on this topic. Today, I want to mention that Janice Krieger and some of her colleagues at Ohio State published an article in Human Communication Research about the importance of mothers talking to daughters about HPV [http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2958.2010.01395.x/abstract]. Another article published in the Spring of 2010 has similar conclusions [http://pediatrics.aappublications.org/cgi/content/abstract/125/5/982].

Mothers’ confidence about talking to their daughters about HPV — believing that they had knowledge and could answer their daughter’s questions — had an important effect on the likelihood of talking. Also, mothers’ belief that the HPV vaccine is an effective response in preventing cervical cancer motivated them to have these conversations. Both findings emphasize the need to communicate about HPV and the HPV vaccine to form knowledge. The findings, as the authors note, also bring to light a need to observe these actual conversations and their effects. For example, mothers may talk about HPV as being a common and easily transmissible virus. Or, mothers might say that HPV causes cervical cancer. The latter might lead daughters to assume that brothers and male friends are not at risk for HPV. That would be an inaccurate conclusion.

puzzlepic3 I have a granddaughter who is seven years old. She happens to live in Texas. This is one of the states that considered making the HPV vaccine mandatory in order to be in public school [http://politifact.com/texas/statements/2010/feb/06/rick-perry/perry-says-hpv-vaccine-he-mandated-would-have-been/]. It didn’t happen … for various reasons. For one, the vaccine is really a series of three shots — not one. The cost for the three shots is about three hundred dollars [http://cancer.about.com/od/hp1/f/hpvvaccinecost.htm]. Time and money… and debate about sexuality.. and religion… then there is the belief that government should not mandate anything… How do we communicate strategically to build mothers’ confidence to talk about those things? And what do we say to boys as well?

http://www.nytimes.com/2010/10/29/us/29vaccine.html

What does Barbra Streisand’s new book have to do with communicating about women’s health?

breastexam02 November 18, 2010

Barbra Streisand and Robert Redford appeared on Oprah’s show this week…the first time they appeared together. And Barbra talked about her new book, My passion for design. She told us all about how some of the proceeds will be used for women’s heart health. She is supporting Cedars-Sinai Women’s Heart Center. You can read more about the center at http://www.discoveringforlife.org/whc.

Barbra asked Oprah if she realized that more women die from heart disease than cancer, and Oprah said, “yes…” with a smile and a comment about how it has been discussed on her show before. Barbra said it was news to her and that the idea that there is so little research that has been done with women about this issue was something she wants to change.

I was thus reminded of the past several posts in which this issue has been discussed and that we need to do a better job of communicating about the status of health science. More women need to understand that too few of us participate in medical research. Barbra Streisand is helping to increase awareness by talking about this reality.

But taking it one step further, even when research has been funded and could include women, women may not participate because families and jobs make it seem nearly impossible to do so. We need our families and our employers to support our participation. We need to ask them to support our participation. If not us, who will do it?

I have participated in clinical trials a couple of times as I describe in my book, ‘Talking about health’. I was asked to participate in research relating to the use of surgery for endometriosis. I felt that I could not say ‘no’ when I am always promoting participation to others and when I am always asking people to participate in my own research. But I had some questions and some concerns. I wanted to know how my privacy would be protected when researchers were looking at my case and seeing the laser treatment being used for my endometriosis. breastexam011

I asked questions about my concerns. I learned that the recorded images would be of the internal activities, so my body as I know it was not going to appear on anyone’s screen. That was reassuring to me. I had several other questions as well, and asking them made me more comfortable with the idea of participating. In fact, now when I have a diagnosis that is a chronic condition, I ask if there are any reseach studies going on that I might be able to participate in. I hope you might consider talking to your doctors about medical research and how you might be involved as well…

What’s politics got to do with how we talk about health care in the U.S.?

October 16, 2010

122_22282 As I describe in the chapter, ‘What’s politics got to do with to do with it?’–more than we care to admit. Access to care is what we usually talk about.., but access to knowledge based on what research gets funded and access to treatment based on what drugs and products are approved relate to politics as well. And even access to information, as policy forms around labeling and package inserts and other ways to help us make informed decisions. All relate to politics… I was thinking about some of these issues while touring a Marcellus shale mining site and wondering about the health and welfare of workers and communities alike.

A couple of days ago, I posted my thoughts about events leading to how we talk about the focus on politics and access to health care In the U.S. Here are a few other events worthy of note… The Great Depression led the government to identify access to health care as a political priority. Now it was unemployed workers who were unable to pay for their own health care that got the government involved. Because so many workers were unemployed, this led doctors’ incomes to fall. Middle class citizens began to rely on public hospitals and state and local health departments to receive health care. In turn, doctors began providing more services through these venues. Doctors charged the welfare departments, and State welfare departments in turn charged the federal government. This cost-shifting system was supported by political priorities established in debates at the federal level and then by passage of such policy as the Social Security Act in 1935. 149_0821

President Truman expanded Social Security and recommended national health insurance in 1949. He continued to work toward it–unsuccessfully–until 1953. A role for government support of health care shifted from keeping workers working based on commerce to a role for government based on those in need or underserved–with the initial stimulus being the unemployed.

A role for government and politics in access to health care shows great expansion in the realm of the underserved and needy during the era of the Great Society, when Presidents Kennedy and Johnson expanded the social welfare and services system. The government’s role now extended well beyond keeping a work force healthy. The effort to provide health care included powerless groups, such as children and the elderly.

The government’s role in protecting workers’ health also grew during this era. But the focus shifted with new initiatives such as the Occupational Safety and Health Administration (OSHA), which was inaugurated in 1971, aligning with efforts to assure health and reduce the need for health care. In OSHA’s first three decades, fatalities in the workplace were cut in half, while injuries were cut 40%.

122_2235 A role for government in health care as a strategy to promote the economy began to threaten the economy as health care costs mounted in efforts to bridge the gaps associated with underserved groups. President Nixon reflected this reality in his attempt to decentralize decision-making about health care, reducing the federal government’s obligations in this realm. This was part of his policy of New Federalism, a doctrine designed to draw lines between issues for national versus state or local governments. Largely, this era focused on wresting control from the federal government and revenue-sharing with states, returning a portion of taxes collected back to state and local decision-making, policy from 1972 to 1986. President Reagan also used the term New Federalism in his block grant approach, shifting monies to state and local initiatives related to providing health care.

President Clinton came into office with health care reform established as a priority. The six principles stated in a health care reform speech in 1993 reveal that the nation was not yet ready to accept limits associated with access: [1] Security: Guaranteed, comprehensive benefits; [2] Savings: Controlling health care costs; [3] Quality: Making the world’s best care better; [4] Choice: Preserving and increasing what you have today; [5] Simplicity: Reducing paperwork and cutting red tape; and [6] Responsibility: Making everyone responsible for health care. The first, third, and fourth principles reveal an emphasis on access, while the second, fifth, and sixth were the guides to be used in controlling cost. The conflict in pursuit of these two divergent paths contributed to the plan never passing, which leaves the government’s obligation in access to health care in a costly dilemma…and that is how we talk about health care in the U.S.–as a costly dilemma relating to assuring the health of workers who will contribute to the economic well-being of the country and assuring the health of groups unable to access care on their own…

How do we talk about a right to health care in the U.S.?

October 14, 2010

It was little more than a decade after the Constitution was adopted when the U.S. Congress debated a role for the government in providing health care for some U.S. citizens. It was argued that when merchant seamen, who acted on behalf of the welfare of all U.S. citizens, became ill and/or disabled, it was only “just” to pay for their health care. In accord with this premise, Congress passed an act to provide for merchant seamen’s medical care in 1798. Congress used the authority of Article I, Section 8 of the U.S. Constitution to support this policy. It empowers the federal government to regulate commerce with foreign nations and to tax for the general welfare as a means to that end.

So–the health and well-being of individual seamen was not the argument used to support a role for government. The need for a government role in health and health care resided in a focus on commerce. If the seamen could not do their jobs, it could harm the nation’s commerce. Other early federal debates led to the provision of health care to the armed forces. It was argued that a healthy army and navy were necessary for national defense. Then, in the first two decades of the 20th century, middle class progressives realized that the American industrial society’s working-class citizens suffered ill health and injury, affecting their ability to work–harming the nation’s productivity levels.

Workplaces were often unsafe, causing injury to workers and their ability to work. In recognition of these facts, a number of economists formed the American Association for Labor Legislation (AALL) in 1905 for the purpose of studying labor conditions and labor legislation. The group advocated for health reforms in industry and sought compulsory health insurance. Initial efforts to argue the merits of such legislation focused on workmen’s compensation. This strategy aimed to provide access to care for workers injured on the job. Woodrow Wilson joined the AALL. He included their social insurance plank in the 1912 Progressive party’s platform. In 1915, they published a model health insurance bill in legislative language to be considered by State legislatures, with California, Massachusetts, and New Jersey supporting the proposal out of the 12 States that discussed it.

As debate continued within the States, so did opposition to a proposal for government health insurance. World War I produced the War Risk Insurance Act that established a comprehensive system of benefits for servicemen and their dependents. A broader policy was defeated, however, with AALL leaders naively assuming that such reform would be viewed as beneficial to all.

Once access to health care is argued around the role of commerce, the challenge becomes how to separate whose ill health and injury would not fit within that realm. If each citizen who works–and this includes those who work inside the home to enable others to work outside the home–contributes to the economy, then the argument appears to support the need to guarantee health care for all. Children will be the next generation of ‘workers’, so their care should be supported as well.

The Congressional Committee on Costs of Medical Care in 1927 proposed Health Maintenance Organizations [HMOs] as a strategy aimed to provide affordable health care to all citizens. A minority report written by doctors and adopted by the American Medical Association took the position that HMOs would hurt the quality of health care. As a result, the Committee’s recommendation was not seriously considered. Congress, however, initiated a program to cover its own members’ health care. And so, talk about a right to health care in the U.S. a century ago…not very much different from talk about a right to health care in the U.S. today.

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…

How might communication–including access to the internet–relate to health disparities?

butterfly-picture May 19, 2010

Health disparities…differences in the health status of some of us compared to others–have many links to communication. We could place more emphasis on efforts to address some of these as part of health care reform.

One communication contributor to health disparities is a lack of equal access to health information. In particular, a digital divide has been identified as leading to differences in people’s awareness and understanding of ways to promote health and treatments for various diseases.

The digital divide has been discussed for years in terms of the affordability and availability of computers. This contributed to programs to increase access to computers in public schools and public libraries. Access to sources of health information is an important goal–one that may be enhanced by improving the nation’s infrastructure. I was struck by a colleague’s recent revelation on our way to a meeting in a rural community in Pennsylvania. He said that he seldom uses the internet from home. In his location, internet access still depends on the use of a dial-up modem. The slow and painful effort to get online just isn’t worth it. Libraries and schools in his area suffer from the same challenges.

The effort to reduce the digital divide by increasing access to online health resources is a good start but reminds me of the ‘just build it and they will come’ fallacy. Once we get on the computer, and we use our favorite search engines to look for health information, how do we decide whether the information is useful and relates to us? How do we understand the information? How do we harness resources to apply the information when we do understand it? That includes having sites for care and providers for care. …that includes having the ability to pay for care, time off to receive care, and transportation to sites for care.

Health disparities becomes a communication issue with many facets and many audiences to consider. If we approach health disparities as only an issue relating to access to information, we risk placing blame for continuing and/or growing disparities on people experiencing the disparities.

In a world where access to health information was supported by access to services, products, and care–our individual perceptions still may lead to disparities. Understanding related to the information and choices to apply the content depends on some knowledge of health terms and ability to translate the metaphors so often used to commmunicate in health information. Understanding also depends on the cultural and social lens through which we view the information. And on our own goals–including where we place responsibility for health.

Some of us assume more personal responsibility for our health than others. Some of us believe more in the role of family history and genetics than others. Some of us believe that the environment plays a greater role in our health than our own behavior. And some of us believe in a role for spirituality and religious faith. When we combine these into our health perspective, sometimes health disparities emerge… Can erasing a digital divide make a difference in these issues? Perhaps if we communicate about them directly, online and in other settings where we talk about health.

How will health care reform change how our country communicates about health?

118_1806 May 12, 2010

Watching my 5 year old granddaughter play youth soccer was great fun. Such energy. Such excitement. Such effort. Everyone running toward the ball and doing their best to get in a good kick. Sometimes in their enthusiasm, they lost sight of which goal they should be aiming for and may even accidentally kick the ball into the other team’s space. It’s a bit like health care reform in the U.S.

Keep ‘health’ in health communication… this is one of my mantras. I remind myself of it when thinking about the value of my own health communication research and the value of work that I review. It reminds me to consider, “how will the work make a difference in the health of someone?” Will it, for example, help someone to make a decision about which treatment to choose, which food to eat, how important rest and fun can be for health? Will it help someone to talk with family members about health history or to disclose to family members, doctors, or others important information about health status? Will it enable others to provide emotional or tangible social support to keep to a health regimen? …and so on.

So when I listen to conversation about health care reform, I am struck by several trends. First, there is so much fear and anger in the discourse. My mom, for example, will be having hip replacement surgery this summer. She is in her late 70s and on Medicare. She is convinced that her doctor will be paid very little for her surgery because of health care reform. She is also fearful that if she doesn’t act now, she may not be able to even find a doctor who will do the surgery soon…because the doctors won’t be paid well and won’t accept patients on Medicare.

We know quite a bit about fear appeals in communication. And sure enough, what I hear suggests to me that for many, the talk about health care reform and the actual reform itself does not make the efficacy of the actions clear. How will this reform be an effective response in both promoting ‘health’ of citizens and in limiting the runaway expenses? How might each one of us feel more confident or gain the ability to make decisions about our own health based on the reform? Made to feel fearful, many become angry and direct it toward the source.

Second, there has been too little direct translation of how health care reform will benefit health. Health illiteracy and science illiteracy often provide a way to explain our lack of understanding about health issues. Health insurance illiteracy is a whole new ball game. Most of us have some experience with car insurance or home owner insurance or life insurance, so we fall back on those as a way to understand health care insurance and health care reform. We need some help here. We need to know what ideas from other insurance contexts apply and what ideas don’t apply.

In some cases, if you get ticketed for speeding or running a red light, it shows up as higher premiums on your car insurance for awhile. Generally, we think that buying life insurance when we are younger rather than older will be less expensive. And if we fail to prune the tall tree near our home and it falls onto our roof, causing us to file a claim–some increase in our premium isn’t too surprising. So how do these ideas relate to health care reform? And if they don’t, why not?

Third, the optimistic outcome relating to health care reform and changes for how our country communicates about health is that we all become wiser about how politics relates to health… So we participate in the political process with our vote in elections and our voice in debate… not just in overcrowded town hall meetings but in the online forums available to us through access to our representatives where we ask questions and persist until we have answers… often and not just when something ‘big’ seems to be in the wind.

In short, we need to keep our eye on the ball and the goal, and make sure that those who represent us do the same…

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.