Storytelling is a powerful tool that can be utilized in public health. In Chapter 3 by Christina S. Beck, she analyzes the narrative of a journalist named Cathy Hainer, who has since passed from cancer. I have not heard of this story before reading this chapter, but I am surprised with the personal depth with which Hainer wrote, for all of the public to consume. Her story is emotional, even from the small snippets I have read. This isn’t someone I ever knew personally, nor have I even followed her entire journey. Hainer used this personal narrative not only to hopefully help others experiencing the same journey, but to reclaim her body, her identity. She is inviting strangers to follow this journey with her. While this is true, and all of what she has written was published internationally in newspapers, Beck starts off the chapter with an ethical dilemma. Is it ethical for her to analyze these newspaper articles for her own advancement?
Ethics is a difficult subject because nothing is black and white, especially in the field of public health, everything seems to fall in this gray area. I think a common misconception is the idea that something cannot be ethically wrong if in the end it is good for them. One campaign that caught my eye while I was taking an infant health and nutrition class is “Breast is bestâ€. The message they are really trying to convey is the health benefits that have been found in breastfeeding, and they came up with this little catchy phrase to do so. The issue is that it makes it seem that those who do not breastfeed are not doing what is best for their child. This is not true at all, of course, but mothers being shamed for not breastfeeding is being increasingly common, and this slogan feeds into it. I think the way in which you communicate something has a large impact on if it is ethical, which is of course, a huge component of this chapter. Scaring or shaming people into a behavior probably not the most ethical way to try to get people to change their behavior, even if it is for a positive health change. For example, in some countries, cigarette boxes have these scary pictures of horrible health conditions that could occur from smoking. Is this an ethical and effective way to get people to stop smoking? What if people do want to quit? Is this campaign also providing resources to support those people? This goes back to the deontological approaches: it is not just about the end result, but also how you got there. Being in a health communications class, that is exactly what we are learning to do. Of course, we are looking at the end results as well, but our main focus is the strategy to get to that main result. We must constantly be self-aware and question our own actions.
Across all readings, the idea of everyone having multiple identities is key. A narrative is often one way to illustrate your multiple identities, and stop one from overtaking all of the rest, as we saw with Hainer. When thinking about the ethics of health communication persuasion, we have to remember that each person has their own intersecting identities to consider, and although we think a campaign may be ‘good’, to some people, it is not. The story written by Linda E. Clarke also shared with this idea with intersecting identities, which we saw at the end when Clarke herself became a patient. On one hand, she has helped many people share their personal health narratives. Now here she is, experiencing what it is like to feel put into the single category of ‘sick’.
The first reading focused on a series of writings made by a journalist while she was going through cancer treatments. While reading, it jumped out at me that the author made the argument that health narratives “are collaborative, not individual, accomplishments, they also become multiple concurrent accomplishments because each participant in the narrative construction impacts (and reflexively gets impacted by) the process of illness and quest for wellness†(p. 74).
The second reading highlighted the author’s own experiences working in bioethics and seeing how narratives helped not only with her work and training, but also with her understanding of her father’s and her own illnesses.
I found the third reading to be the most interesting, as it looked into the ethics of health communication. This connected nicely with last week’s third reading, a study that we determined as a class had some questionable ethics.
In Audiology, ethics is an important piece of our role as clinicians, but ethics has always been something that I have found difficult to concretely define. I have heard the phrase “do no harm”, of course, and this is mentioned in the reading. However, there were certain terms I was unfamiliar with prior to reading which helped elucidate what ethics truly are. For example, the terms deontological (believing something is intrinsically right or wrong and individuals are not means to ends) and telological (believing consequences determine moral worth) are two perspectives when considering ethics.
I found the discussion in the reading about labeling particularly applicable and poignant. The author makes the case that often people become connected or personified by their illness/condition.
After this, I began thinking about an issue within the community of people with hearing loss. Some people with hearing loss view their condition as an impairment and identify as lowercase-d deaf. However, others see their deafness as a communication difference and identify as Deaf, and are part of a rich culture of others who are Deaf. It is important, I believe, that I make sure that I understand the perspectives of my future patients and the way their view their own deafness. Perhaps I could utilize some of the narrative strategies we have learned about in order to get my patients to self-reflect and share with me how they identify in terms of their hearing loss.
Cathy Hainer published her health narrative during a time when discussions of women’s health and breast cancer were just starting shift from a private to a public conversation. The first reading provided a compelling example of how a personal health narrative can begin as an individual’s story but then touch the lives of others and become integrated into their narratives as well. The individual’s story can become co-authored by people they have relationships with as they all make sense of the process of dealing with disease. Furthermore, when a column is shared with the public as Hainer’s was, the individual’s narrative can become a part of a larger community’s story of the meaning of humanity and coping with illness. As I think about the possibility of gathering personal narratives from people fighting tick-borne diseases, this article made me reflect on the value of sharing those narratives within the community as a way to create ‘our story’ of fighting tick-borne diseases.
The second article was written by a bioethicist who uses the power of storytelling to foster dialogues that improve understanding and build community. She makes the point that communities and group membership are partially defined by the stories that the individuals share or co-author. That’s why it’s important to promote storytelling as a way to move people from a more objective or principle-based perspective to feeling like they are a part of the relationship and co-owners of the story. This shift from ‘other’ to ‘self’ can help to share the burden of illness and promote caring interactions within the community.
The last reading explored the detailed ethical dilemmas related to health communication campaigns. I especially appreciated the description of the debate surrounding the use of negative messages that use fear and graphic images to force you to remember the message. We discussed this in class last week, and I was having trouble with considering both sides of the debate clearly. This chapter helped to explain how highly negative messages can sometimes leave people feeling scared and anxious, but with no tools to help them avoid the risky behavior. Messages designed to provoke fear seem especially problematic when members of the community aren’t providing consent to view the potentially triggering video or picture.
Chapter 40 also discussed the need for information to be complete and present all sides while still keeping a clear message. This can be difficult to achieve, but it’s more ethical to provide all of the information so people can make an informed decision. This reminded me of a tick education video that presents a discussion of natural vs. synthetic pesticide use. (Link to video – https://www.youtube.com/watch?time_continue=299&v=bKNbrWvfuJQ). I’d be interested to hear what the rest of you think about this “Spray Safe, Play Safe†project (http://www.spraysafeplaysafe.org/films.html). It is very scripted, but it presents clear, correct information and involves members of the local community in Connecticut.
The first two readings focused on storytelling and health. The first reading analyzed a column by Cathy Hainer about her own experiences with breast cancer. The author discussed how health care narratives are embodied rhetoric and are implicitly relational, and how health narratives are public constructions. This reading brought up how society stigmatizes certain illnesses or conditions over others, which can impact individuals, so they do not feel “normal†or “complete.†This is something to consider for health care narratives as storytelling can reduce stigma by building community and relationships, something discussed in the second reading. The author of the first reading, Beck, found through her analysis that health narratives can spark insights, validate perspectives, and facilitate meaning-making of situations that can be hard to understand or reconcile. Additionally, she found that Hainer’s column served as an example of how narrative is an integral component of human understanding and public decision-making. Similarly, the second reading discussed how storytelling generates connections and builds community. Additionally, the reading discussed how sharing and listening to stories can heal (ease pain) and move people. I really like how these readings highlighted that storytelling can build community and sustain relationships because I think that when people share and listen to stories, they can find common ground, relate to each other, or have empathy. In doing this they can bond and grow together. I think that community building is an important skill for public health professionals.
The third reading focused on ethics. Ethics is very important in public health, especially when considering that we are often working with disadvantaged communities, many of whom have been taken advantage of or ignored in the past. Some ethical concerns the reading brought up were around approaches to health communication, such as tailoring, targeting, and cultural sensitivity. The author discussed how segmentation, a common health communication practice, can have ethical concerns because they come at the expense of fostering community norms and consensus and do not encourage public debate. This could be of special ethical concern in disadvantaged communities that are never listened to or never encouraged to share their voice. Tailored health communication can exclude others which could making them feel disadvantaged or other. The reading also critically views cultural sensitivity as it “maintains to serve the establishment’s agenda and will not help change the position of socioeconomically marginalized groups.†The author proposes a different approach, the culture centered approach, which emphasizes providing marginalized groups with opportunities for their voices to be heard by decision makers. This approach can lead to a change in socioeconomic position for marginalized groups if decision makers enact appropriate policy change after listening to the community.
Upon investigating this week’s readings on the topics of narratives, health, and healing, there was an overlying theme of ethics and what they truly mean in the field of health. As I was reading, I was reminded of a seminar that was conducted for all of the first-year speech pathology and audiology students not too long ago that concerned the topic of ethics. In that seminar, we engaged in a conversation in which we discussed the difference between ethics and morals. Essentially all professional fields are provided with some sort of code of ethics in which a framework in laid out to act as a guide in ethical decision making in that field. The goal is to both uphold the integrity of the professional field it is guiding as well as to protect the consumer. That being said, morals are sometimes lost in the following of a written guide of ethics. Though having over overlapping principles, ethics and morals are not quite the same; ethics are a systemic set of rules to guide individuals as a means of protection whereas morals are in individual’s compass determining what is “right” and “wrong.” In this week’s readings, I think there were various instances in which ethics were involved, but morals were abandoned.
The overview of the first reading is prefaced with a story about Sammie, an 8-month old child who is ill but with no explanation. In this story, it is stated that, “although frustrated
with their managed-care system, and disappointed with physicians who seem to lose interest when they cannot provide answers, Brad and Joyce retain their faith in the miracles of modern medicine.” This line in particular stuck out to me because a think a clear line between morals and ethics is drawn. The physicians in the case of Sammie have likely done whatever that can in terms of providing care for Sammie in an ethical standpoint, but what about morally? To take time away from a patient that you have already exhausted every possible diagnosis you can think if with no luck may follow ethical guidelines, but morally speaking, Sammie is still a patient that deserves attention.
In the second reading, the author highlighted a story of her own during her time working as an ethical consultant in a hospital. During her time there, she was approached by a nurse named Amy who had asked if her and her colleagues were committing euthanasia by providing patient’s with analgesia which suppresses respiration and results in an earlier death. The author was quick to apply an ethical principle to the situation that justified the action and assured her that she was not committing euthanasia, but her morals told her that she had not attended to this nurse at all. She did not ask her about her personal experience or consider what it was like to provide care for patients who were dying and in pain. Ethically she was spot on but morally she missed the mark.
The final reading from chapter 15 in the Handbook of Health Communication describes a few different ethical principles and modern topics concerning ethics, but the distinction between morals and ethics isn’t really identified. The first two readings feature storytelling as a way to incorporate ethics while the final reading acts more like a practical handbook. I think the greatest takeaway point that I got from this week’s readings is how advantageous storytelling can be in the field of ethics in health. Telling stories humanizes ethics while a handbook can lose that aspect.
This week’s readings focused on how personal narratives can help in the healing process, what these narratives mean to all those involved, and the ethics around health communication. The first reading was the story of USA reporter Cathy Hainer, who chose to share her battle with breast cancer with the world. The author of the book begins by stating that she felt weird analyzing someone else’s story and questioned whether she had the right to do so. Public health narratives are in an odd grey area of not being totally personally but also interesting that the public takes them on as their own. Health narratives bring in every aspect of the journey with an illness that goes beyond the set of symptoms. They also have the ability to impact the delivery of health care and drive people to take action. Even though health narratives go beyond the physical body, it is the state of the body that often drives the health narrative. Hainer often described her perception of herself based off what was happening to her body. She began to think less of herself when her appearance started to reflect the sickness that was inside. This chapter also bring up that health narratives are not just about the person writing them, the illness in not only happening to them. The narrative is shaped by the people they are surrounded with and how those people are experiencing the disease. Because of this, multiple health narratives from different perspectives can often arise from the narrative of the person who is sick. Health narratives also have the power to bring people together by giving them someone to relate to, so they don’t feel so alone in their struggles.
The second reading was all about one woman’s experience in the world of bioethics and how that transformed to storytelling in healthcare. Linda Clarke was a storyteller outside of work but then she began to see how the two worlds collide and could not be kept separate. Storytelling in general brings people together and the telling of one story can start a snow ball effect of other stories being told. She ran a storytelling workshop for nurses, and she saw that it gave them a way to relate to one another but also make their work relationship centered instead of objective. Clarke also had personal experience with health narratives when her dad got sick and when she got sick herself. It gave her a way to organize the chaos that often ensues with a serious illness. She also uses those stories as teaching tools and often looks back on them to bring lessons from those times into her current life. When Clarke was telling about her personal illness, she said a lot of the same things that Hainer did. She recalled a shift from person to patient and how she was being defined by her illness, which Hainer also experienced. They both also expressed the blurred sense of self when part of your identity becomes being sick.
The last reading was not about health narratives but focused on the ethics of health communication as a whole. Ethical dilemmas often arise in health communication because the campaign is often trying to influence the behavior of the target audience. When trying to influence someone there is a fine line of giving facts and crossing over into aggressive persuasion to get the desired outcome. If ethical issues are not addressed though, the campaign will suffer because people will not adhere to the message if they feel like it cannot be trusted. Ethics in health communication is centered around do no harm, do good, and respect for autonomy. Ethical issues can be present in the goals or objectives if the solutions are not accessible to everyone. Consent is another difficult area because there is no way to get direct consent from every person that will interact with health communication. Cultural sensitivity is another big area of health communication ethics. Appealing to a certain culture by using their own themes or symbols is dangerous because it can easily get misrepresented.
I enjoyed this week’s readings a lot, particularly, “What I’ve Learned: Stories From Inside the Health Care Community,”by Linda E. Clarke. The part I enjoyed reading the most was the section on, “Stories of Care: Building Community†because it was nice to hear the perspectives of nurses working in that hospital on their relationships with patients. This is related to a lot of the work I do at the health care center. When I am talking to diabetic patients with the Registered Nurse, we talk about how their life is going, things that may have led up to their diagnosis and we really build a relationship with our patients. When the Registered Nurse and I would talk about that specific patient when creating care plans, we often reminisced about other things about the patient. For example, we have a patient who wears the same hat to every appointment and he said that this hat is what helps keeps his A1c down because his father who was diabetic gave it to him, so he uses it as motivation. He also has this laugh that is infectious. It is nice to remember things and have a relationship with a patient that moves far beyond medical needs.
A quote from this reading resonated with me. “To tell a story is to shift the ground under people, it is to change the world, and this happened as the women told their storiesâ€. This quote stood out to me because it emphasized the importance of the story and how a story can impact the person telling it and the listeners of the story. It is empowering to hear the story and different perspectives of individuals that we might already have a preconceived story for. It also allows for people to find similarities in their experiences such as nurses and their work for caring for others. This reading also made me reflect on our story circle workshop in class. Hearing other similar stories made me realize how people who I did not know before shared similar experiences as me and allowed me to see them in a different light.
Storytelling is a powerful, persuasive, and effective tool in the health community and public health. Beck refers to how through verbal and nonverbal behaviors, “health care participants coordinate their actions and affirm or negate preferences for identity, relational roles, and courses of health care treatment†(Beck 65) (Berger & Luckman 1966). In this section, there were a series of stories from different doctors and patients with their experience in healthcare. Storytelling humanizes the experiences and provides a voice for the patient. Hainer, for example, used storytelling to reclaim her body, her voice, her identity while sharing her journey as the primary narrator. “She reflexively claimed ownership of her body and rhetorically positioned herself as active in the health care process.†(Beck 67). I think when people choose to share such personal stories during their most vulnerable times it creates a deeper connection and allows to become empowered and assures that they are not alone. It is not common for people to share in detail their illnesses or deteriorating health but a person’s “health narrative still gets shaped and co-constructed by the orientation of health care professionals,†(Beck 74). In addition, a person’s understanding of health literacy and confidence to advocate for oneself also is a major contributor to the overall experience. The main takeaways from this reading and Hainer’s journey are a critique of published health narratives, emergent of health narratives, and public conversation regarding public and private matters. The critique of published health narratives shows that stories are more than just the individuals but more of a social construct. Narratives can be told through the lens of family members, health care providers, and social support system members who will all have their own perspectives. The emergent of health narratives provides insight into narratives being temporal and co-constructions. It takes time to understand and there are many cycles that occur in understanding and experiencing. Lastly, in terms of boundaries and ethics, how appropriate was it for Hainer to share so much private information to the public?
In the second reading, the author frames how storytelling can generate connections, foster relationships, sustain communities while stimulating self-reflection and learning. Storytelling is an art that reflects, creates, and sustains relationships in their respective communities. Communities are built through the art of storytelling.
Ethics is the science of right and wrong. Ethics has evolved in Public Health over the years. Many of us may be familiar with Dr. Goldestein’s work on ethics and social justice where he breaks down ethics and provides us different scenarios to practice using ethics. Taking Dr. Goldstein’s health disparities class during undergrad was one of the major reasons why I decided to pursue an MPH to combat health inequity and to use morality and ethics to provide the greatest amount of good for the most amount of people. Within ethical frameworks and princioples “philosophers have presented ethical theories and principles that define moral duties and obligations,†particularly with the health care and health promotion. (Guttman 633). The philosophical study of morality includes the way things are, the way things should be, and any underlying assumptions that guide our thinking through the moral universe. As future public health practitioners, we will run into many difficult situations where we need to think retrospectively and use our ethics and morality to make decisions that could affect people’s lives, therefore learning of ethics is imperative to our work.
This week I am choosing to focus my reflection on one reading only, due to the personal impact that the reading had on me. This is the article about Cathy Hainer, a journalist who chose to publicly document her experience with breast cancer, and how her narrative grew from a personal story to a complex public experience. I felt this story very deeply, as it reminded me of my personal experiences of growing up with a mother who had cancer. As a beloved Spanish teacher, my mom was a well-respected and quite public member of our local community. She constantly struggled with comparing her current state to her “before cancer” self, just like Cathy did. For example, my mom refused to miss work, sometimes running to the bathroom in the middle of class to vomit before returning to teach like nothing had just happened.
Like Cathy’s boyfriend, my family never really viewed cancer as something that happened to my mom, but rather something that happened to the entire family. We felt deep sadness about her condition, but much of that sadness came from how the disease impacted our relationships with her. And, like the community of readers that rallied around Cathy, our school and town rallied around my mom. Her illness was not just her tumors and pain, but the meals my volleyball team made us each night, the choreographed lip sync dance that the school performed and filmed to her favorite song, and the memorial service where people had to stand outside because we had reached maximum capacity according to fire code.
I was struck by the quote, “By treating narratives as relational, we move forward in understanding how family members, health care providers, social support system members, and in this case, newspaper readers, participate in the co-telling (and the co-experiencing) of health narratives.” The health narrative of an individual is so intimate and personal, but it does not exist in a vacuum. Cathy’s work clearly made an impact on so many lives, and may have improved the health and wellness of individuals through her education about the disease. To me, this is true health communication- raw, poignant, and necessary.
Before reading this, I have never heard of Cathy Hainer. I am in awe that she decided to share her story, journey, and fight with breast cancer so publicly. I partially believe that the reason she did this was because as a journalist she knows the power of stories. I also believe that it takes a strong sense of self to share such personal and emotional thoughts and experiences. Beck’s struggle with whether she believe has the right to analyze Hainer’s article is completely understandable. Because she has passed so many questions are at play. Was this the intention of what Hainer wanted her work to do? Part of me thinks yes because she was a journalist but she was not just a journalist so there is a part of me that thinks that she does not want her vulnerable and emotional moments under scrutiny of analysis.
Clarke bringing up that storytelling has the ability to connect people if you let it is major because often times I think people put it on the storyteller but the audience also has to be open to the story for the connection to be made. For this same reason, I agree that storytelling is relational. I truly enjoyed Clarke’s story because it showed how what many may consider a minor moment be a pivotal point in someone’s experience. That one question that Amy asked changed her whole view point of ethics in healthcare despite having study the principles for year. This had me question whether ethic should change depending on role and positionality.
I think do good and do no harm is a good way to look at ethic because it is flexible across different moral view points. Often times we look at what wrong and right through western morality which we must be conscious of. This is especially true when targeting groups that may be different than us. Our goals should be consensual and be sensitive. Religion, culture, ethnicity, background, access etc. must all be taken into account when creating health communication.
The first reading reminded me of a reporter from the local news in my hometown who let the public in on her battle with cancer. It was an extremely memorable experience for me because even though I did not watch the news much, I still remember catching segments where she would be talking about her own experience and hearing my parents talk about it. The part that referred to Hainer as “the reporter with cancer†struck me because it made me think about how I thought about my local reporter. At the time that I was watching the reporter, I had a family member who was battling with another illness. Although they were not going through the exact same experience and I could not personally relate, it was helpful to see someone on tv who was also going through a hard time. It made it easier to cope with having a sick family member when I realized others were going through a similar experience and might understand how I feel. I think the experience I had exemplifies how health narratives can really be public experiences.
One line in the second reading that really stuck with me was when Clarke was describing the story of Robert and how he lives not only in his medical chart but in the experience of his nurse. This made me really think about the patient physician relationship and how influential this relationship is not only on the patient, but also the professional. It made me realize how much the patient can influence the professional and how telling a patient’s story can be just as helpful as fitting them with a device or detecting a hearing loss.
I thought the authoritative voice was an interesting aspect of the third reading. In audiology, we typically share a lot of information and explain where the information we provide is coming from, however, there are times when we just expect patients to trust what we tell them to do. As we mentioned earlier when we talked about the patient physician relationship, professionals are often seen as having all the information and never viewed as the patient themselves. I think keeping that in mind when talking to a patient could help remind professionals to be more informative rather than prescriptive. If the doctor thinks of how they would want to receive information if they were the patient, it might help them come across more helpful rather than persuasive.
Before reading the chapters for this week, I went in with the mindset that storytelling should be for the speaker, not the audience, and that we shouldn’t try to see ourselves in someone else’s story. After completing the readings however, my thinking shifted. Although I still believe that the speaker should be about the speaker, and they should speak their own truth, stories can also be a great way of relating and connecting with the people around us.
In “Becoming the Story” By Christina S. Beck, we learn about Cathy Hainer, the late USA Today Reporter who kept a public diary about her battle with breast cancer. In it, she documented her experience with her illness while simultaneously maintaining her normal life. Beck talks recalls going to the hospital to give Hainer letters from USA Today readers that had been following her journey. One letter in particular was addressed to “Cathy Hainer (reporter with cancer)”. After reading this, it made me wonder how a person can become more than the product that they develop. For Cathy, the product was the journal, and even though it contained parts of her life that did not include her illness, she was still thought of as the “reporter with cancer”. How does storytelling help us move past that frame of mind?
In the reading “What I’ve Learned: Stories From Inside the Health Care Community”, Linda E. Clarke talks about stories in health care, and shares a few examples of her experience with it. There were two in particular that stood out to me the most.The first was a story from a woman named Amy.* Amy recalls a moment when she was approached by a group of nurses after an ethics committee meeting at a hospital. The nurses asked whether providing an increased amount of analgesia to a terminally ill patient would be considered euthanasia. Amy states that she gave the group an answer that was “rooted in principle”, and although her response seemed to satisfy the nurses, she didn’t feel like she answered the question properly. This made me think about how when we are asked to share, often times, we are fixated on providing the “correct” answer, instead of the best answer, or one that acknowledges the concerns of others. Clarke also shares Robert’s story. Unlike the previous story, this one was told by someone on behalf of another. Robert was a young man who passed away after being denied care while in Canada, despite him living there for ten years. His nurse (unnamed) had cared for Robert for several years, and before he died he asked her to tell his story. This made me look at storytelling in a completely different light. Robert’s nurse was someone who got to know Robert on a very personal level. She was able to tell his story in a compelling, passionate, and caring way. Additionally, being so close allowed her to see parts of his life that he himself may not have been able to see.
The final reading by Nurit Guttman discussed some of the ethical dilemmas with health communication. Emotion and audience selection were two of the main concerns surrounding ethics. In order to draw attention to a particular topic, communication campaigns will use different tactics that play on certain emotions in order to get a response. Another ethical dilemma is the use of distortion of an issue, and how it is used, even if it is for a good cause. This made me think of some of the campaigns we talked about in class last week–specifically the anti-smoking commercials that most of could remember (the tooth pulling commercial or the skin tearing commercial. Those anti-smoking ads provoked fear and disgust in the viewers to get their point across. They also used very graphic imagery to demonstrate the consequences of smoking, and although they were memorable, they were also a blatant distortion of the truth. The reading also talks about ethics when it came to tailoring, targeting, and cultural sensitivity. Initially, I assumed that directing certain messages to groups who were more at risk or more likely to adopt a certain behavior was a good thing, but I learned that this also involves more time and effort, and could possibly infringe on the group’s privacy. I really liked what the author had to say about transitioning to a more “cultured-centered” approach. This involves working with marginalized groups (instead of giving them what we think they need), and allows their voices be heard. It is also an opportunity to let them dictate and guide the story.
Storytelling is a powerful tool that can be utilized in public health. In Chapter 3 by Christina S. Beck, she analyzes the narrative of a journalist named Cathy Hainer, who has since passed from cancer. I have not heard of this story before reading this chapter, but I am surprised with the personal depth with which Hainer wrote, for all of the public to consume. Her story is emotional, even from the small snippets I have read. This isn’t someone I ever knew personally, nor have I even followed her entire journey. Hainer used this personal narrative not only to hopefully help others experiencing the same journey, but to reclaim her body, her identity. She is inviting strangers to follow this journey with her. While this is true, and all of what she has written was published internationally in newspapers, Beck starts off the chapter with an ethical dilemma. Is it ethical for her to analyze these newspaper articles for her own advancement?
Ethics is a difficult subject because nothing is black and white, especially in the field of public health, everything seems to fall in this gray area. I think a common misconception is the idea that something cannot be ethically wrong if in the end it is good for them. One campaign that caught my eye while I was taking an infant health and nutrition class is “Breast is bestâ€. The message they are really trying to convey is the health benefits that have been found in breastfeeding, and they came up with this little catchy phrase to do so. The issue is that it makes it seem that those who do not breastfeed are not doing what is best for their child. This is not true at all, of course, but mothers being shamed for not breastfeeding is being increasingly common, and this slogan feeds into it. I think the way in which you communicate something has a large impact on if it is ethical, which is of course, a huge component of this chapter. Scaring or shaming people into a behavior probably not the most ethical way to try to get people to change their behavior, even if it is for a positive health change. For example, in some countries, cigarette boxes have these scary pictures of horrible health conditions that could occur from smoking. Is this an ethical and effective way to get people to stop smoking? What if people do want to quit? Is this campaign also providing resources to support those people? This goes back to the deontological approaches: it is not just about the end result, but also how you got there. Being in a health communications class, that is exactly what we are learning to do. Of course, we are looking at the end results as well, but our main focus is the strategy to get to that main result. We must constantly be self-aware and question our own actions.
Across all readings, the idea of everyone having multiple identities is key. A narrative is often one way to illustrate your multiple identities, and stop one from overtaking all of the rest, as we saw with Hainer. When thinking about the ethics of health communication persuasion, we have to remember that each person has their own intersecting identities to consider, and although we think a campaign may be ‘good’, to some people, it is not. The story written by Linda E. Clarke also shared with this idea with intersecting identities, which we saw at the end when Clarke herself became a patient. On one hand, she has helped many people share their personal health narratives. Now here she is, experiencing what it is like to feel put into the single category of ‘sick’.
The first reading focused on a series of writings made by a journalist while she was going through cancer treatments. While reading, it jumped out at me that the author made the argument that health narratives “are collaborative, not individual, accomplishments, they also become multiple concurrent accomplishments because each participant in the narrative construction impacts (and reflexively gets impacted by) the process of illness and quest for wellness†(p. 74).
The second reading highlighted the author’s own experiences working in bioethics and seeing how narratives helped not only with her work and training, but also with her understanding of her father’s and her own illnesses.
I found the third reading to be the most interesting, as it looked into the ethics of health communication. This connected nicely with last week’s third reading, a study that we determined as a class had some questionable ethics.
In Audiology, ethics is an important piece of our role as clinicians, but ethics has always been something that I have found difficult to concretely define. I have heard the phrase “do no harm”, of course, and this is mentioned in the reading. However, there were certain terms I was unfamiliar with prior to reading which helped elucidate what ethics truly are. For example, the terms deontological (believing something is intrinsically right or wrong and individuals are not means to ends) and telological (believing consequences determine moral worth) are two perspectives when considering ethics.
I found the discussion in the reading about labeling particularly applicable and poignant. The author makes the case that often people become connected or personified by their illness/condition.
After this, I began thinking about an issue within the community of people with hearing loss. Some people with hearing loss view their condition as an impairment and identify as lowercase-d deaf. However, others see their deafness as a communication difference and identify as Deaf, and are part of a rich culture of others who are Deaf. It is important, I believe, that I make sure that I understand the perspectives of my future patients and the way their view their own deafness. Perhaps I could utilize some of the narrative strategies we have learned about in order to get my patients to self-reflect and share with me how they identify in terms of their hearing loss.
Cathy Hainer published her health narrative during a time when discussions of women’s health and breast cancer were just starting shift from a private to a public conversation. The first reading provided a compelling example of how a personal health narrative can begin as an individual’s story but then touch the lives of others and become integrated into their narratives as well. The individual’s story can become co-authored by people they have relationships with as they all make sense of the process of dealing with disease. Furthermore, when a column is shared with the public as Hainer’s was, the individual’s narrative can become a part of a larger community’s story of the meaning of humanity and coping with illness. As I think about the possibility of gathering personal narratives from people fighting tick-borne diseases, this article made me reflect on the value of sharing those narratives within the community as a way to create ‘our story’ of fighting tick-borne diseases.
The second article was written by a bioethicist who uses the power of storytelling to foster dialogues that improve understanding and build community. She makes the point that communities and group membership are partially defined by the stories that the individuals share or co-author. That’s why it’s important to promote storytelling as a way to move people from a more objective or principle-based perspective to feeling like they are a part of the relationship and co-owners of the story. This shift from ‘other’ to ‘self’ can help to share the burden of illness and promote caring interactions within the community.
The last reading explored the detailed ethical dilemmas related to health communication campaigns. I especially appreciated the description of the debate surrounding the use of negative messages that use fear and graphic images to force you to remember the message. We discussed this in class last week, and I was having trouble with considering both sides of the debate clearly. This chapter helped to explain how highly negative messages can sometimes leave people feeling scared and anxious, but with no tools to help them avoid the risky behavior. Messages designed to provoke fear seem especially problematic when members of the community aren’t providing consent to view the potentially triggering video or picture.
Chapter 40 also discussed the need for information to be complete and present all sides while still keeping a clear message. This can be difficult to achieve, but it’s more ethical to provide all of the information so people can make an informed decision. This reminded me of a tick education video that presents a discussion of natural vs. synthetic pesticide use. (Link to video – https://www.youtube.com/watch?time_continue=299&v=bKNbrWvfuJQ). I’d be interested to hear what the rest of you think about this “Spray Safe, Play Safe†project (http://www.spraysafeplaysafe.org/films.html). It is very scripted, but it presents clear, correct information and involves members of the local community in Connecticut.
The first two readings focused on storytelling and health. The first reading analyzed a column by Cathy Hainer about her own experiences with breast cancer. The author discussed how health care narratives are embodied rhetoric and are implicitly relational, and how health narratives are public constructions. This reading brought up how society stigmatizes certain illnesses or conditions over others, which can impact individuals, so they do not feel “normal†or “complete.†This is something to consider for health care narratives as storytelling can reduce stigma by building community and relationships, something discussed in the second reading. The author of the first reading, Beck, found through her analysis that health narratives can spark insights, validate perspectives, and facilitate meaning-making of situations that can be hard to understand or reconcile. Additionally, she found that Hainer’s column served as an example of how narrative is an integral component of human understanding and public decision-making. Similarly, the second reading discussed how storytelling generates connections and builds community. Additionally, the reading discussed how sharing and listening to stories can heal (ease pain) and move people. I really like how these readings highlighted that storytelling can build community and sustain relationships because I think that when people share and listen to stories, they can find common ground, relate to each other, or have empathy. In doing this they can bond and grow together. I think that community building is an important skill for public health professionals.
The third reading focused on ethics. Ethics is very important in public health, especially when considering that we are often working with disadvantaged communities, many of whom have been taken advantage of or ignored in the past. Some ethical concerns the reading brought up were around approaches to health communication, such as tailoring, targeting, and cultural sensitivity. The author discussed how segmentation, a common health communication practice, can have ethical concerns because they come at the expense of fostering community norms and consensus and do not encourage public debate. This could be of special ethical concern in disadvantaged communities that are never listened to or never encouraged to share their voice. Tailored health communication can exclude others which could making them feel disadvantaged or other. The reading also critically views cultural sensitivity as it “maintains to serve the establishment’s agenda and will not help change the position of socioeconomically marginalized groups.†The author proposes a different approach, the culture centered approach, which emphasizes providing marginalized groups with opportunities for their voices to be heard by decision makers. This approach can lead to a change in socioeconomic position for marginalized groups if decision makers enact appropriate policy change after listening to the community.
Upon investigating this week’s readings on the topics of narratives, health, and healing, there was an overlying theme of ethics and what they truly mean in the field of health. As I was reading, I was reminded of a seminar that was conducted for all of the first-year speech pathology and audiology students not too long ago that concerned the topic of ethics. In that seminar, we engaged in a conversation in which we discussed the difference between ethics and morals. Essentially all professional fields are provided with some sort of code of ethics in which a framework in laid out to act as a guide in ethical decision making in that field. The goal is to both uphold the integrity of the professional field it is guiding as well as to protect the consumer. That being said, morals are sometimes lost in the following of a written guide of ethics. Though having over overlapping principles, ethics and morals are not quite the same; ethics are a systemic set of rules to guide individuals as a means of protection whereas morals are in individual’s compass determining what is “right” and “wrong.” In this week’s readings, I think there were various instances in which ethics were involved, but morals were abandoned.
The overview of the first reading is prefaced with a story about Sammie, an 8-month old child who is ill but with no explanation. In this story, it is stated that, “although frustrated
with their managed-care system, and disappointed with physicians who seem to lose interest when they cannot provide answers, Brad and Joyce retain their faith in the miracles of modern medicine.” This line in particular stuck out to me because a think a clear line between morals and ethics is drawn. The physicians in the case of Sammie have likely done whatever that can in terms of providing care for Sammie in an ethical standpoint, but what about morally? To take time away from a patient that you have already exhausted every possible diagnosis you can think if with no luck may follow ethical guidelines, but morally speaking, Sammie is still a patient that deserves attention.
In the second reading, the author highlighted a story of her own during her time working as an ethical consultant in a hospital. During her time there, she was approached by a nurse named Amy who had asked if her and her colleagues were committing euthanasia by providing patient’s with analgesia which suppresses respiration and results in an earlier death. The author was quick to apply an ethical principle to the situation that justified the action and assured her that she was not committing euthanasia, but her morals told her that she had not attended to this nurse at all. She did not ask her about her personal experience or consider what it was like to provide care for patients who were dying and in pain. Ethically she was spot on but morally she missed the mark.
The final reading from chapter 15 in the Handbook of Health Communication describes a few different ethical principles and modern topics concerning ethics, but the distinction between morals and ethics isn’t really identified. The first two readings feature storytelling as a way to incorporate ethics while the final reading acts more like a practical handbook. I think the greatest takeaway point that I got from this week’s readings is how advantageous storytelling can be in the field of ethics in health. Telling stories humanizes ethics while a handbook can lose that aspect.
This week’s readings focused on how personal narratives can help in the healing process, what these narratives mean to all those involved, and the ethics around health communication. The first reading was the story of USA reporter Cathy Hainer, who chose to share her battle with breast cancer with the world. The author of the book begins by stating that she felt weird analyzing someone else’s story and questioned whether she had the right to do so. Public health narratives are in an odd grey area of not being totally personally but also interesting that the public takes them on as their own. Health narratives bring in every aspect of the journey with an illness that goes beyond the set of symptoms. They also have the ability to impact the delivery of health care and drive people to take action. Even though health narratives go beyond the physical body, it is the state of the body that often drives the health narrative. Hainer often described her perception of herself based off what was happening to her body. She began to think less of herself when her appearance started to reflect the sickness that was inside. This chapter also bring up that health narratives are not just about the person writing them, the illness in not only happening to them. The narrative is shaped by the people they are surrounded with and how those people are experiencing the disease. Because of this, multiple health narratives from different perspectives can often arise from the narrative of the person who is sick. Health narratives also have the power to bring people together by giving them someone to relate to, so they don’t feel so alone in their struggles.
The second reading was all about one woman’s experience in the world of bioethics and how that transformed to storytelling in healthcare. Linda Clarke was a storyteller outside of work but then she began to see how the two worlds collide and could not be kept separate. Storytelling in general brings people together and the telling of one story can start a snow ball effect of other stories being told. She ran a storytelling workshop for nurses, and she saw that it gave them a way to relate to one another but also make their work relationship centered instead of objective. Clarke also had personal experience with health narratives when her dad got sick and when she got sick herself. It gave her a way to organize the chaos that often ensues with a serious illness. She also uses those stories as teaching tools and often looks back on them to bring lessons from those times into her current life. When Clarke was telling about her personal illness, she said a lot of the same things that Hainer did. She recalled a shift from person to patient and how she was being defined by her illness, which Hainer also experienced. They both also expressed the blurred sense of self when part of your identity becomes being sick.
The last reading was not about health narratives but focused on the ethics of health communication as a whole. Ethical dilemmas often arise in health communication because the campaign is often trying to influence the behavior of the target audience. When trying to influence someone there is a fine line of giving facts and crossing over into aggressive persuasion to get the desired outcome. If ethical issues are not addressed though, the campaign will suffer because people will not adhere to the message if they feel like it cannot be trusted. Ethics in health communication is centered around do no harm, do good, and respect for autonomy. Ethical issues can be present in the goals or objectives if the solutions are not accessible to everyone. Consent is another difficult area because there is no way to get direct consent from every person that will interact with health communication. Cultural sensitivity is another big area of health communication ethics. Appealing to a certain culture by using their own themes or symbols is dangerous because it can easily get misrepresented.
I enjoyed this week’s readings a lot, particularly, “What I’ve Learned: Stories From Inside the Health Care Community,”by Linda E. Clarke. The part I enjoyed reading the most was the section on, “Stories of Care: Building Community†because it was nice to hear the perspectives of nurses working in that hospital on their relationships with patients. This is related to a lot of the work I do at the health care center. When I am talking to diabetic patients with the Registered Nurse, we talk about how their life is going, things that may have led up to their diagnosis and we really build a relationship with our patients. When the Registered Nurse and I would talk about that specific patient when creating care plans, we often reminisced about other things about the patient. For example, we have a patient who wears the same hat to every appointment and he said that this hat is what helps keeps his A1c down because his father who was diabetic gave it to him, so he uses it as motivation. He also has this laugh that is infectious. It is nice to remember things and have a relationship with a patient that moves far beyond medical needs.
A quote from this reading resonated with me. “To tell a story is to shift the ground under people, it is to change the world, and this happened as the women told their storiesâ€. This quote stood out to me because it emphasized the importance of the story and how a story can impact the person telling it and the listeners of the story. It is empowering to hear the story and different perspectives of individuals that we might already have a preconceived story for. It also allows for people to find similarities in their experiences such as nurses and their work for caring for others. This reading also made me reflect on our story circle workshop in class. Hearing other similar stories made me realize how people who I did not know before shared similar experiences as me and allowed me to see them in a different light.
Storytelling is a powerful, persuasive, and effective tool in the health community and public health. Beck refers to how through verbal and nonverbal behaviors, “health care participants coordinate their actions and affirm or negate preferences for identity, relational roles, and courses of health care treatment†(Beck 65) (Berger & Luckman 1966). In this section, there were a series of stories from different doctors and patients with their experience in healthcare. Storytelling humanizes the experiences and provides a voice for the patient. Hainer, for example, used storytelling to reclaim her body, her voice, her identity while sharing her journey as the primary narrator. “She reflexively claimed ownership of her body and rhetorically positioned herself as active in the health care process.†(Beck 67). I think when people choose to share such personal stories during their most vulnerable times it creates a deeper connection and allows to become empowered and assures that they are not alone. It is not common for people to share in detail their illnesses or deteriorating health but a person’s “health narrative still gets shaped and co-constructed by the orientation of health care professionals,†(Beck 74). In addition, a person’s understanding of health literacy and confidence to advocate for oneself also is a major contributor to the overall experience. The main takeaways from this reading and Hainer’s journey are a critique of published health narratives, emergent of health narratives, and public conversation regarding public and private matters. The critique of published health narratives shows that stories are more than just the individuals but more of a social construct. Narratives can be told through the lens of family members, health care providers, and social support system members who will all have their own perspectives. The emergent of health narratives provides insight into narratives being temporal and co-constructions. It takes time to understand and there are many cycles that occur in understanding and experiencing. Lastly, in terms of boundaries and ethics, how appropriate was it for Hainer to share so much private information to the public?
In the second reading, the author frames how storytelling can generate connections, foster relationships, sustain communities while stimulating self-reflection and learning. Storytelling is an art that reflects, creates, and sustains relationships in their respective communities. Communities are built through the art of storytelling.
Ethics is the science of right and wrong. Ethics has evolved in Public Health over the years. Many of us may be familiar with Dr. Goldestein’s work on ethics and social justice where he breaks down ethics and provides us different scenarios to practice using ethics. Taking Dr. Goldstein’s health disparities class during undergrad was one of the major reasons why I decided to pursue an MPH to combat health inequity and to use morality and ethics to provide the greatest amount of good for the most amount of people. Within ethical frameworks and princioples “philosophers have presented ethical theories and principles that define moral duties and obligations,†particularly with the health care and health promotion. (Guttman 633). The philosophical study of morality includes the way things are, the way things should be, and any underlying assumptions that guide our thinking through the moral universe. As future public health practitioners, we will run into many difficult situations where we need to think retrospectively and use our ethics and morality to make decisions that could affect people’s lives, therefore learning of ethics is imperative to our work.
This week I am choosing to focus my reflection on one reading only, due to the personal impact that the reading had on me. This is the article about Cathy Hainer, a journalist who chose to publicly document her experience with breast cancer, and how her narrative grew from a personal story to a complex public experience. I felt this story very deeply, as it reminded me of my personal experiences of growing up with a mother who had cancer. As a beloved Spanish teacher, my mom was a well-respected and quite public member of our local community. She constantly struggled with comparing her current state to her “before cancer” self, just like Cathy did. For example, my mom refused to miss work, sometimes running to the bathroom in the middle of class to vomit before returning to teach like nothing had just happened.
Like Cathy’s boyfriend, my family never really viewed cancer as something that happened to my mom, but rather something that happened to the entire family. We felt deep sadness about her condition, but much of that sadness came from how the disease impacted our relationships with her. And, like the community of readers that rallied around Cathy, our school and town rallied around my mom. Her illness was not just her tumors and pain, but the meals my volleyball team made us each night, the choreographed lip sync dance that the school performed and filmed to her favorite song, and the memorial service where people had to stand outside because we had reached maximum capacity according to fire code.
I was struck by the quote, “By treating narratives as relational, we move forward in understanding how family members, health care providers, social support system members, and in this case, newspaper readers, participate in the co-telling (and the co-experiencing) of health narratives.” The health narrative of an individual is so intimate and personal, but it does not exist in a vacuum. Cathy’s work clearly made an impact on so many lives, and may have improved the health and wellness of individuals through her education about the disease. To me, this is true health communication- raw, poignant, and necessary.
Before reading this, I have never heard of Cathy Hainer. I am in awe that she decided to share her story, journey, and fight with breast cancer so publicly. I partially believe that the reason she did this was because as a journalist she knows the power of stories. I also believe that it takes a strong sense of self to share such personal and emotional thoughts and experiences. Beck’s struggle with whether she believe has the right to analyze Hainer’s article is completely understandable. Because she has passed so many questions are at play. Was this the intention of what Hainer wanted her work to do? Part of me thinks yes because she was a journalist but she was not just a journalist so there is a part of me that thinks that she does not want her vulnerable and emotional moments under scrutiny of analysis.
Clarke bringing up that storytelling has the ability to connect people if you let it is major because often times I think people put it on the storyteller but the audience also has to be open to the story for the connection to be made. For this same reason, I agree that storytelling is relational. I truly enjoyed Clarke’s story because it showed how what many may consider a minor moment be a pivotal point in someone’s experience. That one question that Amy asked changed her whole view point of ethics in healthcare despite having study the principles for year. This had me question whether ethic should change depending on role and positionality.
I think do good and do no harm is a good way to look at ethic because it is flexible across different moral view points. Often times we look at what wrong and right through western morality which we must be conscious of. This is especially true when targeting groups that may be different than us. Our goals should be consensual and be sensitive. Religion, culture, ethnicity, background, access etc. must all be taken into account when creating health communication.
The first reading reminded me of a reporter from the local news in my hometown who let the public in on her battle with cancer. It was an extremely memorable experience for me because even though I did not watch the news much, I still remember catching segments where she would be talking about her own experience and hearing my parents talk about it. The part that referred to Hainer as “the reporter with cancer†struck me because it made me think about how I thought about my local reporter. At the time that I was watching the reporter, I had a family member who was battling with another illness. Although they were not going through the exact same experience and I could not personally relate, it was helpful to see someone on tv who was also going through a hard time. It made it easier to cope with having a sick family member when I realized others were going through a similar experience and might understand how I feel. I think the experience I had exemplifies how health narratives can really be public experiences.
One line in the second reading that really stuck with me was when Clarke was describing the story of Robert and how he lives not only in his medical chart but in the experience of his nurse. This made me really think about the patient physician relationship and how influential this relationship is not only on the patient, but also the professional. It made me realize how much the patient can influence the professional and how telling a patient’s story can be just as helpful as fitting them with a device or detecting a hearing loss.
I thought the authoritative voice was an interesting aspect of the third reading. In audiology, we typically share a lot of information and explain where the information we provide is coming from, however, there are times when we just expect patients to trust what we tell them to do. As we mentioned earlier when we talked about the patient physician relationship, professionals are often seen as having all the information and never viewed as the patient themselves. I think keeping that in mind when talking to a patient could help remind professionals to be more informative rather than prescriptive. If the doctor thinks of how they would want to receive information if they were the patient, it might help them come across more helpful rather than persuasive.
Before reading the chapters for this week, I went in with the mindset that storytelling should be for the speaker, not the audience, and that we shouldn’t try to see ourselves in someone else’s story. After completing the readings however, my thinking shifted. Although I still believe that the speaker should be about the speaker, and they should speak their own truth, stories can also be a great way of relating and connecting with the people around us.
In “Becoming the Story” By Christina S. Beck, we learn about Cathy Hainer, the late USA Today Reporter who kept a public diary about her battle with breast cancer. In it, she documented her experience with her illness while simultaneously maintaining her normal life. Beck talks recalls going to the hospital to give Hainer letters from USA Today readers that had been following her journey. One letter in particular was addressed to “Cathy Hainer (reporter with cancer)”. After reading this, it made me wonder how a person can become more than the product that they develop. For Cathy, the product was the journal, and even though it contained parts of her life that did not include her illness, she was still thought of as the “reporter with cancer”. How does storytelling help us move past that frame of mind?
In the reading “What I’ve Learned: Stories From Inside the Health Care Community”, Linda E. Clarke talks about stories in health care, and shares a few examples of her experience with it. There were two in particular that stood out to me the most.The first was a story from a woman named Amy.* Amy recalls a moment when she was approached by a group of nurses after an ethics committee meeting at a hospital. The nurses asked whether providing an increased amount of analgesia to a terminally ill patient would be considered euthanasia. Amy states that she gave the group an answer that was “rooted in principle”, and although her response seemed to satisfy the nurses, she didn’t feel like she answered the question properly. This made me think about how when we are asked to share, often times, we are fixated on providing the “correct” answer, instead of the best answer, or one that acknowledges the concerns of others. Clarke also shares Robert’s story. Unlike the previous story, this one was told by someone on behalf of another. Robert was a young man who passed away after being denied care while in Canada, despite him living there for ten years. His nurse (unnamed) had cared for Robert for several years, and before he died he asked her to tell his story. This made me look at storytelling in a completely different light. Robert’s nurse was someone who got to know Robert on a very personal level. She was able to tell his story in a compelling, passionate, and caring way. Additionally, being so close allowed her to see parts of his life that he himself may not have been able to see.
The final reading by Nurit Guttman discussed some of the ethical dilemmas with health communication. Emotion and audience selection were two of the main concerns surrounding ethics. In order to draw attention to a particular topic, communication campaigns will use different tactics that play on certain emotions in order to get a response. Another ethical dilemma is the use of distortion of an issue, and how it is used, even if it is for a good cause. This made me think of some of the campaigns we talked about in class last week–specifically the anti-smoking commercials that most of could remember (the tooth pulling commercial or the skin tearing commercial. Those anti-smoking ads provoked fear and disgust in the viewers to get their point across. They also used very graphic imagery to demonstrate the consequences of smoking, and although they were memorable, they were also a blatant distortion of the truth. The reading also talks about ethics when it came to tailoring, targeting, and cultural sensitivity. Initially, I assumed that directing certain messages to groups who were more at risk or more likely to adopt a certain behavior was a good thing, but I learned that this also involves more time and effort, and could possibly infringe on the group’s privacy. I really liked what the author had to say about transitioning to a more “cultured-centered” approach. This involves working with marginalized groups (instead of giving them what we think they need), and allows their voices be heard. It is also an opportunity to let them dictate and guide the story.