Tyler Munn, IUPUI: From Exploitation to Empowerment: A Discussion of Black/African American Distrust of Medical Research and Potential Solutions

Black/African American people are underrepresented in research. One of the cited reasons is a deep distrust of medical research in this community. This paper explores the experiences of distrust, the historic logic for the distrust, and potential solutions to increase participation. Distrust of the medical research system is apparent in the literature. One study showed a larger distrust rate of physicians among Black/African Americans even after controlling for sociodemographic variables. Another study asked focus groups of Black/African Americans about barriers to participating in research and found all the themes related to distrust. Finally, another study found Black/African American men who had heard of the Tuskegee Syphilis Study were less likely to participate in research. Qualitatively, history is the key to understanding distrust. The history of exploitation the Tuskegee Syphilis Study is explained. Other historic events are explored like Marion Sims’s experiments on slave women without anesthesia. The section concludes with modern examples of where distrust still exists. With an understanding of the history, a systematic review is presented that focuses on reaching “hard-to-reach” populations. Three large solutions are apparent: community research partnerships, social marketing, and language framing. Community involvement in study design showed increased participation in the systematic review, and a community based participatory research study among African Americans received a 90% trust score. Social marketing was studied, and it was found using a mix of indirect and direct marketing was key. Studying the framing of language around health disparities found simply the way the supplementary literature described disparities significantly impacted participation and mediated distrust. The historic distrust in this community can begin to be overcome through employing culturally competent research methods that empower rather than exploit Black/African Americans.

Blake Miller, IUPUI: Bizarre Medical Deceptions of the Mid-Nineteenth Century

Using various primary documentation, this presentation will focus on a few of the odd, often bizarre, medical deceptions that occurred in the mid-nineteenth century. From patients diagnosed with hysteria being exposed as frauds (specifically, from drinking their own urine in the night in order to induce yellow-bile vomit in the morning), to a woman claiming her bones to be brittle as glass (while secretly cracking her triple jointed toes underneath a table as she moved her arms), and even a couple claiming daily miscarriages (going so far as to produce various dead animals as the malformed ‘fetuses’). After examining the cases, the presentation will aim to answer three questions. For what (potential) reasons did the individuals conceive of, and participate in, these deceptions? How common were exploitative enterprises similar to those discussed? Finally, what aspects of the era’s culture and scientific understanding facilitated the deceptions? This presentation springs off research conducted for the final project of the Fall 2018 History of Medicine and Public Health 364 course (which focused on Thomas Laycock’s 1839 publication, “An Essay on Hysteria”).

Zachary Wessel, Indiana State University: Opiate Epidemic

Over the last two decades, the presence of opiates has become more prevalent in today’s society. Primary care physicians, researchers, and law enforcement are doing everything in their power to keep this epidemic from spreading, but is it too late? According to the National Center of Drug Abuse, in America, more than 130 people die every day due to overdosing on opioids. Opioids are prescription painkillers that are used to treat very high levels of pain such as heroin and synthetic fentanyl. The National Center of Drug Abuse also presented a statistic stating that, “roughly 21 to 29 percent of patients prescribed opiates for chronic pain misuse them. Also, between 8 and 12 percent of these patients develop an opioid disorder.” The sad fact of this epidemic is that the root of the problem is coming from our hospitals, a place for healing rather than addiction. Steps towards fixing this issue include hospitals increasing their supply of overdose-reversing drugs and improving the treatment and recovery services offered at hospitals. However, I believe that the most important solution to the epidemic is finding a replacement pain medication for hospitals to eliminate the source of the problem. In my presentation, I would like to bring to light recent discoveries in the world of pain management and policies being put into place to fight this epidemic.

Riley O'Shaughnessy, IUPUI: Challenging Mental Illness Stigma: Narratives in Popular Media

To be human is to love story. Humans create and share stories to gain understanding – to explain life, the universe, and everything. Stories may present themselves in a multitude of forms. The most popular contemporary stories are created for and shared by way of mass media. Popular media is structured in such a way that only allows for a single direction of information flow, from producers to consumers. This structure presents an obvious discrepancy in power status. Producers of popular media are uniquely situated and are able to exercise near total control over narratives, and thus the beliefs and values of the masses. This control over belief is especially damaging when popular media falsely presents minority/out groups – emphasizing negative traits and dramatizing reality. These false representations breed a dangerous combination of ignorance and radical belief, which has led to an environment of deep-rooted prejudice and stigma. In the case of mental illness, false representations form barriers to treatment, impair self-esteem, and have created a reactionary culture wherein the mentally ill are met with fear, derision, and ridicule. Action must be taken to change the way society responds to mental illness. Fighting against these false representations is not helpful; instead the focus of stigma reduction should be on advocating for and congratulating accurate, positive representations of mental illness.

Aish Thamba, IU School of Medicine: Only the Lonely: An Inquiry on the Importance of Friendships in Mental Healthcare

During the 1960s, recovery and treatment policies for Americans with severe mental illnesses were radically changed due to the de-institutionalization movement. This shift to community based healthcare reflected a change in public opinion on the efficacy and benevolence of state-run hospitals. Through the lenses of historical memoirs such as Anna Agnew’s “From Under the Cloud” and Barbara Taylor’s “The Last Asylum”, the intricate web of compassionate care for patients with mental illnesses in state-run institutions is explored. Furthermore, there is special focus on patient care and perspective at Central State Hospital in the dual-diagnosis unit (DDU) through staff interviews and published newsletter articles by the patients themselves. The reduction in isolation and the sense of community within the state run hospitals offered safe homes and friendships to these patients. The shift to community based therapy did not provide the same spaces of compassion and freedom to these patients to explore their sense of identity and personality. These cultivated relationships in the state run institutions reveal a dichotomous treatment of mental disorders by not only treating symptoms but also allowing the patients to understand themselves.

Shivani Surravarjjala, IUPUI: Progression of Mental Health in Women: From Asylum to Community

Considered a physical ailment, the term ‘hysteria’ was first described by Dr. Jean-Martin Charcot as a sex-selective disorder caused by internal injury affecting the nervous system (McVean). Sigmund Freud, an Austrian neurologist regarded as the founding father of psychoanalysis later suggested that ‘hysteria’, a uterine derived disease, was caused by childhood sexual abuse or sexual fantasies (Bogousslavsky). Even as recently as 1970, the DSM defined hysterical neurosis as “an involuntary psychogenic loss or disorder of function…emotionally charged situations are symbolic of the underlying conflicts” (Diagnostic and Statistical, p. 39). The word ‘hysteria’ was not removed from the DSM manual until as recently as 1980, where previous symptoms are now considered a manifestation of dissociative disorders. The term ‘hysteria’ is a prime example of the naïve societal view of mental illness in women. Though history shows a shift in women’s roles between the 19th century and the 21st century, there has been little change in the biased view of women diagnosed with a mental illness. History shows the evolution of understanding of mental illness from a scientific perspective. Primitive ideologies, suggested by Freud, previewed mental illness as a physical, tangible causation in the brain evolved into hard evidence for a chemical imbalance that could be managed. Now in the modern age, medicine has allowed the healthcare community to diagnose and treat mental illness more accurately and effectively. Today, though hysteria is not a diagnosis made by physicians, women tend to fall victim to systemic minimizing of symptoms and overall stigma that goes with mental illness. In order to understand the future of mental health and women, it is important to understand women’s experiences with mental illness from early psychiatric facilities to deinstitutionalization and modern community care.

Aishat Audu, IUPUI: Suffering in Silence: The Story of Postpartum Depression

Postpartum Depression (PPD) is a serious illness that 10-13% of women suffer with in silence. Presenting itself within 4-30 weeks post-delivery, it can lead to several symptoms such as include crying spells, changes in appetite, fatigue, apathy, anhedonia, and severely depressed mood. Current treatment relies heavily on psychotherapy coupled with antidepressants, lifestyle changes, and building a strong support system. However, the etiology is unclear and is often described as multifactorial. Societal standards and expectations of motherhood, often leaves women unprepared to face a new reality and the new identity given to them as new mothers. Many women suffering from PPD feel like they are alone and continue to suffer in silence without treatment. The objective of this paper is to take a deep dive into the history of PPD, the personal narratives of women who have suffered from PPD, and ethical consideration that physicians must consider when caring for new mothers.

Zuzanna Lutrzykowska, University of Michigan, Ann Arbor: Against the Legal Right to Voluntary Active Euthanasia

The legalization of the right to voluntary active euthanasia is a prominent issue in bioethics, defended by influential moral philosophers such as Judith Jarvis Thomson and Gerald Dworkin. In this paper, I defend a view proposed by David Velleman against the legalization of voluntary active euthanasia: giving patients the option to legally obligate physicians to perform voluntary active euthanasia can actually make the patient worse off by placing an additional psychological burden on the patient. I achieve this by identifying similarities between Velleman’s argument against the legalization of the right to voluntary active euthanasia and Debra Satz’s argument against legalizing the selling of one’s own kidneys. I primarily focus on Satz’s idea that giving people the legal option to sell their kidneys may pressure them into making this choice, when they otherwise would not have considered this option. I then respond to the arguments proposed by Dan W. Brock against Velleman’s idea with an emphasis on the effects of economic pressure on the patient’s ability to fully exercise their autonomy. I conclude that since none of these objections adequately address Velleman’s concerns, there should not be an explicit legal right for patients to obligate their physicians to perform voluntary active euthanasia.

Monica Deck, IUPUI: Utility of Death as a Choice

End-of-life choices are one of the most controversial and enduring topics in the field of biomedical ethics today. For this paper, the author engages in a reframing of classic Utilitarian ethics to consider the morality of medical choices like physician assisted death (PAD) and active euthanasia (AE). By cultivating a new interpretation of ‘greatest happiness,’ the author describes the inherent morality and intrinsic good of legalized PAD and AE.

Supriya Chittajallu, IUPUI: Perspectives of Death and Dying and the Role of Medical Professionals

Birth and death are the two guarantees of human existence. The way that each individual chooses to spend their time in between both events, their life, sets them apart. There are many variables to be considered like that of morality, patient will, and the roles and responsibilities of medical professionals. Questions of a patient’s right to die and the role of a medical professional in this process are logically connected to these variables. Through the analysis of Arna Bontemps’s A Summer Tragedy, Kurt Vonnegut’s Fortitude, The Rule of Double Effect: Clearing Up the Double Talk from the American Medical Association (AMA), and personal experience as a palliative care volunteer these topics will be expanded upon with the goal of addressing the aforementioned question of where lies the balance between the rights and responsibilities of medical professionals and the dying.

Carly Marten, University of Michigan, Ann Arbor: A Case Study on Health Literacy Regarding Circumcision in Women in Addis Ababa, Ethiopia

This undergraduate thesis presents a case study on health literacy regarding circumcision in women in Addis Ababa, Ethiopia. The interview data were collected in the summer of 2018, and the sample consists of five women who could recall their circumcision experiences. Participants were asked about demographic information, languages and spaces of use, education and conversations about female circumcision, and opinions on public policy. Interviews were interpreted from Amharic to English by an L1 Amharic, L2 English speaker and OB/GYN. The analytical model derived from this data is termed the hourglass model of circumcision narratives, examining how the participants shared the single commonality of a nonconsensual and painful circumcision procedure but demonstrate a diversity of reflections and experiences prior to and following the procedure. This thesis aims to answer the question how do women in Addis Ababa talk about their circumcision experiences, and how are their narratives informed by social discourses? The social inputs considered are space, public policy, and participants’ communities.

Brittney Ortiz, IUPUI: Type 2 Diabetes Prevalence in White Non-Hispanics and Hispanics

Diabetes mellitus, also known as diabetes, in America can be seen as a huge health epidemic to all sorts of people. However, Type 2 diabetes is more common that Type 1. Type 2 diabetes can be easily seen in different ethnicities in the United States. More specifically Hispanics as opposed to Non-Hispanic Whites (NHW). The influence of access to quality health care, social and cultural factors, or genetic factors might at least partially explain disparities in Type 2 diabetes prevalence in White (Non-Hispanic Whites) and Hispanics. Even though we have those problems today and possibly even into the future there are ways that we can lower the rate of diabetes not only in Hispanics but in all ethnicities. However, as a society, our first steps should focus on how we can level out the field for people to feel like it is their ethnicity or culture that caused them to have this disease. These actions based on what can be seen through research needs to focus on poverty rates and providing not only health care options but an improvement to the society in poverty areas

Télyse Masaoay, Vanderbilt University: Confusion in Care: Racial Ambiguity & Interactions with Medical Professionals

Sociological research has long considered the impact of race on healthcare – in terms of access, treatment, and outcomes. Scholars have concluded that people of color, particularly Black and Brown people, are uniquely disadvantaged in health care settings (Nelson 2002:666). Racial minorities often lack access to quality care and find themselves experiencing poorer health outcomes due to stressors associated with racism (Nelson 2002:668). Some evidence has indicated that the ability of an individual to pass as White can positively influence one’s self-reported health status (Jones et al. 2008). This research clearly identifies the salience of racial appearance to health care outcomes and highlights provider-patient interaction as a potential nexus of health disparity. However, research that explores the intersection between identity and health care often does not account for one of the fastest growing populations in the United States: Multiracials. Some scholars have shown Multiracial groups to be difficult to categorize racially; resulting in certain cognitive depletion effects—perhaps confirming their status as “unfamiliar stimuli [that] challenge the perceiver's well-practiced monoracial classification system” (Chen and Hamilton 2012:153; Gather et al. 2018). Using a mixed-methods approach, my research incorporates ambiguous Multiracials into the field of medical sociology. Through quantitative secondary analysis of Health Information National Trends survey data and supplemental interviews with medical school faculty and students, I have investigated the ways uncertainty, racial identity, and medical settings interact to impact Multiracial patients’ health care experiences and physicians’ decision-making. Final results will be available by March 2019.

Swapnali Chavan, IUPUI: Older Women and Discrimination at Work

I am interested in this topic as I have experienced and witnessed gender discrimination at work. As I have developed a recent interest in Aging and lifecourse, I decided to explore this topic by including older women in my research. I want to confirm if age is a predictor of work discrimination among older women. I will be working on HRS data and analyzing it using SPSS software. After conducting this research, I will be able to speak if age is a salient risk factor for work discrimination against older women at work.

Nirupama Devanathan, IUPUI: Metaphors, Magicians, and Messages: How Linguistics Inform Patient-Provider Interactions

Communication has an intrinsic connection to culture, representing a means of expressing the norms and values that a group of people share. Translation connects the messages of two different languages and their respective cultural contexts. In the United States, the incredible diversity between people offers evidence that intercultural understanding is important in all walks of life. Intercultural communication is extremely important between medical professionals and patients, but requires an understanding of the coded messages to confirm quality of treatment. Therefore, it is important to analyze the use of language in patient-provider interactions from the perspective of linguistic theory. Specifically, this work will examine the role of language to describe patient journeys with cancer treatment, diagnosis of depression, and response to cultural illness, like the evil eye. The metaphor is a linguistic apparatus that establishes a connection between the abstract and concrete; many cancer patients use metaphor to compare their situation with the archetype of The Journey and Violence. Also, the ability to interpret and describe symptoms is important in the evaluation of patients of different cultures who might use equivalent words in different contexts, making the diagnosis of mental illness difficult in Spanish speaking populations. The evil eye, an illness of the rural populations of Mexico and Central America, reflects an extension of folklore to convey and reinforce traditional power structures. Conclusively, it is crucial to include cultural elements in treatment to offer quality care, especially with respect to patient-provider interactions.

Sneha Dave, IU Bloomington: Advocacy for Young Adults With Chronic Diseases

Young adults with chronic diseases often experience professional, social, and emotional barriers. My nonprofit, the Health Advocacy Summit, is a daylong, no-cost advocacy event to empower young adults with chronic diseases, currently in four states, including Indiana, Texas, North Carolina, and California. The content of the Summits is tailored to fit the often unrecognized needs of the young patient population. Past Summit themes have included overcoming emotional barriers of living with chronic diseases, health policy topics, testimonial speakers, and vocational rehabilitation to navigate the school system and workplace. In my presentation, depending on the format, I will focus on the need to empower young adults with chronic diseases. I will also include themes of patients and physician interactions and the need for holistic care.

Marlena Dib, West Virginia University: Truth of the Souls

Narrative Medicine, loosely defined, brings narrative competence into clinical situations. The subject has grown to possess nationwide recognition. In keeping with its growing reputation, Narrative Medicine has become a reoccurring topic of discussion in West Virginia University’s School of Medicine and Undergraduate colleges. A course in Narrative Medicine, titled “Medicine and the Arts” was first offered as an undergraduate class at WVU. The course ignited a new passion in its students who chose to create the first-of its-kind Medicine and the Arts Club in the state of West Virginia at WVU. Its purpose is to serve the community through volunteer service, educate others on the field of Narrative Medicine, review and discuss examples of medical art, and host events related to these topics. These events include: storytelling gatherings, poetry reading, patient-created art galleries, activities in nursing homes and children’s hospitals, expression through art, and more. The club strives to be open to all those interested in learning about Narrative Medicine and hopes to educate the public about holistic healing when clinical treatment isn’t enough. One of our goals with the club is to incorporate the kinds of activities that permit empathy and increase understanding in future clinicians; skills they may not have the opportunity to learn in their future endeavors. At the Midwest Medical Humanities Conference, we believe that we can spread the importance of teaching Narrative Medicine to undergraduate students and to inform others of our learning process. As students who have taken the Medicine and the Arts course at WVU, it helped us understand that patients often feel misunderstood, like Frankenstein. Some examples of this are paintings by a former student learning how to communicate her feelings through art and a cancer patient who expressed their feelings of being an experiment and misunderstood, like Frankenstein.

Melody Wickstrom, IUPUI: I Hold in my Hands a Heart

This poem is about the conflict some physicians face about becoming emotionally involved in their work. It is from the perspective of a physician who is having an internal debate about why exactly the heart s/he is working on is so important. I am not a physician, but I have learned about doctor-patient relationships, changes within the medical system including more incorporation of medical humanities, and have learned first-hand the struggles physicians face in their everyday lives. I also have taken into consideration my feelings on death and dying and how I have thought I would handle that as a physician myself. These are the groundings for my poem.

Monica Deck, IUPUI: Tyger, Tyger: a Pathography

Writing about the experience of illness can have an incredible impact on disease. By engaging in written narrative or pathography, patients can place themselves at the center of their illness, rather than having their illness placed at the center of their ‘self.’ “Fearful Symmetry” is an example of mental illness pathography, the full text of which will be presented by the author, supported by social and academic context detailing the method of writing pathography, as well as describing its utility in the multiple disciplines that comprise the medical humanities.

Kamna Gupta, IUPUI: Herbal Medicine and Western Medical Systems in Samoa

In the Samoan Islands there exists two primary types of healthcare: the ancient Samoan herbal medicine (fofo) and Western medical systems and practices initially introduced by British colonizers and furthered by western globalization initiatives. After gaining some insight from primary interviews and shadowing Samoan herbal medicine practitioners, also called fofo, physicians in western medical institutions in Samoa, and Samoan villagers, I made an interesting discovery regarding the coexistence of the two medical practices. In every interview I conducted, I noticed an underlying coarseness towards both fields of medicine resulting in uncertainty about which medical system to trust and use: fofo or western medicine. Over five weeks of field research, I determined that tensions and uncertainty towards the medical systems arise due to cultural, societal, and religious norms and values as well as mistrust in both systems which ultimately leads to a low and toxic quality of healthcare for Samoan people. * This paper/presentation will provide a brief overview on Samoan fofo and herbal treatments as well as highlight the tensions between traditional fofo and western medicine in Samoa. *It should be noted that the research presented in this paper is preliminary, observational, and based on interviews conducted on a subpopulation of the Samoan people.

Ashly Holt, IUPUI: How We Should Approach the Use of Genetic Alteration

In the tone technological advancement the medical community is presented with new ethical debates often. The political, social, and scientific progress over the past two centuries have lead to the advancement of DNA analysis. To best determine how to handle such situations that arise, it is important to prioritize fields of thoughts relevant to your work. Things found valuable in the medical humanities field include history, human nature, and literature. One of the latest issues at hand in the ethical community includes the use of genetic alteration. During our era, a choice will be made over this topic. Keeping the key fields in mind, applied to the the frame of genetic alteration the analysis of German Nazi experiments and classical literature are presented to invoke humanity rooted thought. The information is to be viewed through a lens of investigation over the interest for this technology and building a statement towards the proper policy of its use.

Hannah McDonald, IUPUI: Decreasing Developmental Disparity: How a Newborn Follow-Up Program Can Impact the Developmental Trajectory of High-Risk Infants and Toddlers

Over the past 80 years, advances in neonatal medicine and preventative care have led to a dramatic reduction in neonatal mortality. Though newborns have better survival outcomes than ever before, newborns admitted to a neonatal intensive care unit (NICU) are still at high risk for developmental delays and disabilities. As a result, the goalpost has shifted to improving neurodevelopmental outcomes and quality of life. A NICU developmental follow-up program addresses this new goal through 1) periodic developmental screening and evaluation, 2) making referrals to early intervention and specialty services, 3) educating caregivers on appropriate development, and 4) participating in cooperative research efforts to highlight risk factors for developmental delay and identify successful interventions. The Riley Newborn Follow-Up Program follows infants and toddlers from all over the state of Indiana and takes an active role in helping to ensure that all of Indiana’s children and families have the resources they need to succeed.

Gurpalik Singh, IUPUI: Health Disparities: Through the Lens of Alternative Break Experiences

Through my IUPUI Alternative Breaks experiences over the past three years, I have gained an insight into the major factors that affect one’s health. These experiences, sponsored by the university and led by students to educate on social issues through community-engaged service in the U.S., have made a lasting impact in my life. Alternative Breaks is an organization here at IUPUI that serves to educate on social issues through community-based service around the United States. I joined Alternative Breaks as a participant in 2016 with the interest on HIV stigmatization; and served at Project Lazarus, a residential transitional housing for people living with HIV/AIDS in New Orleans. It became evident that the physical determinants, such as the aftermath of Hurricane Katrina, were not the only factor contributing to the disparities in health for the residents of New Orleans. As I continued my research with The Lazarus Project the following year on health and poverty issues and this year with an emphasis on gentrification and health disparities, I noted that there were reoccurring factors that hindered one's ability to receive the same care as others; including zip code, race/ethnicity, and socioeconomic status. Thus, the aim of this presentation is on the social determinants of health. Many times, it is hard for medical providers to empathize with their patients' circumstances. I hope that with this talk, one is exposed to the relevance of how it impacts patient care and start to understand how changes can be made through self-action and public policies. For example, something as simple as accepting patients with Medicaid or Medicare can make a huge impact on medical care. Understanding the social and cultural aspects are essential as one is continuing their careers into this widespread and critical field.