Author: Madeline Kameny

Using Oral History in Public Health

Public health prides itself on being interdisciplinary – but there’s always more to learn. I recently discovered a field of study whose department at UNC was looking to collaborate with public health students. This discipline is called oral history, and the Southern Oral History Program at UNC is a pioneer in its field.

Oral history works to preserve narratives by interviewing, recording, and archiving life stories. The narrator is often from a part of society whose voices have been silenced, and wants to contribute his or her life story to historical archives. For this reason, unlike with traditional qualitative interviews in public health, the narrator’s identifying information is often attached to his or her story. When oral historians use life stories in their research, the narrators play an important role in ensuring that their stories are portrayed accurately. They also receive a copy of their interview, preserved in a written format, for themselves and future generations.

Oral history would be especially useful in conducting public health needs assessments, seeking community expertise for solving a local health problem, finding more robust quotes for supporting policy movements, or discovering the experiences of living through a particular outbreak or natural disaster. Public health research already uses qualitative interviewing techniques, but could greatly benefit from more collaboration with oral historians. We traditionally go into interviews with pre-established questions about specific health topics. We may get some background of the participant’s life, but hearing this as a narrative rather than a response could help us build a deeper understanding of the person sitting across from us.

Discrimination and Health Part II: People of Color

Last week, I talked about how discrimination faced in healthcare settings can impact LGBTQ+ individuals’ attitudes towards healthcare, and how facing discrimination in everyday life can negatively impact their health outcomes. People of color (PoC) in the U.S., including immigrants, refugees, and Indigenous Peoples, face this double-barreled oppression as well.

Of course, one way racism affects health is through the broad structures that have placed many PoC groups at disadvantaged positions, intersecting with poverty – one study found that almost 100,000 black people die prematurely each year who would not die were there no racial disparities in health.

But discrimination itself, even on an individual level, can impact the health and healthcare experiences of PoC. Microaggressions, or everyday interactions rooted in racism, are a daily stressor for PoC, and these stressors can lead to premature illness and mortality.

Of course, this discrimination doesn’t just happen in daily interactions, but also in medical settings, which rightfully leads to mistrust and under-use of healthcare for PoC. Language and cultural barriers faced by immigrants can have similar effects.

Because race, socioeconomic status, and health are so intertwined, it may never be possible to know what levels of discrimination have the greatest ultimate effects on health outcomes. But we know they all have at least some, which should be enough to demand action.

Sources: https://www.ncbi.nlm.nih.gov/pubmed/12042611

https://www.hindawi.com/journals/tswj/2013/512313/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821669/#!po=2.38095

https://health.usnews.com/health-news/patient-advice/articles/2016-02-11/racial-bias-in-medicine-leads-to-worse-care-for-minorities

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2696665/

https://www.ncbi.nlm.nih.gov/pubmed/17001262

Discrimination and Health Part I: LGBTQ+ Americans

Past research has suggested that discrimination can impact health outcomes – perhaps through vehicles such as stress of daily interactions and negative experiences with the healthcare system. One group whose experiences with discrimination can be linked to negative health outcomes is LGBTQ+ Americans. A study found that over half of LGBTQ people have experience slurs and offensive comments, and over half have been sexually harassed or experienced violence, or had an LGBTQ friend or family member experience such trauma.

We can make the connection between discrimination and trauma through various factors. One is through microaggressions –  seemingly harmless daily interactions with others who express, in this case, homophobic or transphobic views. These have been found to negatively impact health. Another is through discrimination within the healthcare system that lead LGBTQ Americans to seek healthcare less frequently. 18% of this population has avoided necessary medical care. Various forms of discrimination they face at the hands of medical professionals, police, and community members are much worse for those of color and those who are transgender.

Unfortunately, we can already see the health outcomes of discrimination to this population – they have higher rates of psychiatric disorders, substance dependence (including higher tobacco use), and suicide; lesbian women are less likely to get preventative services for cancer, and gay men are at higher risk for certain STIs.

How can we work to eliminate these gaps, even when interpersonal discrimination may take longer to tackle as our culture continues to evolve? HealthyPeople2020 provides several recommendations. First, healthcare providers should discuss sexual orientation and gender identity (SOGI) respectfully with patients, and collect data on it. Medical students should be trained in LGBTQ culturally-responsive care. In addition, we must be spokespeople against legal discrimination of this population in social services such as employment, housing, and health insurance.

Khat: Dangerous drug, cultural pastime, or self-medication?

Khat is made from young leaves from the khat tree that are commonly chewed in the Horn of Africa and the Arab Peninsula. The drug produces stimulating effects and is said to make the chewer animated, energized, and social. Chewing can be done individually or as a social activity – in these gatherings, a communal tobacco pipe is placed at the center of the circle and passed around in addition to the khat. Khat chewing has become an extremely popular practice in the Horn of Africa – an estimated 90 percent of Somali men partake. Research suggests that this practice is associated with physical, psychological, and social risks, and the Somali diaspora is already one that faces high rates of PTSD and other mental health issues. Khat chewing may worsen these issues in the long run, but can also serve as a source of self-medication for those without resources for dealing with trauma.

There is controversy over khat in the countries where Somali refugees are resettling. Abukhar Awale, a Somali TV talk show host, suffered khat addiction himself and became a proponent of the ban. He called khat “the biggest barrier to our integration…segregating Somali youngsters from wider society…they do not contribute, they don’t speak English, they don’t feel they are part of the society.” On the other side, many argue that khat itself is not the problem, but the symptom of a society ravaged by war and trauma. They point to over-policing of people of color and the fact that the ban was associated very little support for those who were made to quit.

Image retrieved from: TripSavvy

Pollution and Pregnancy: A Match Made in Hell

A recent study in the journal Biological Psychiatry has found that mothers exposed to air pollution during pregnancy have children at higher risk of cognitive health problems, due to brain alteration during fetal development. Such abnormalities resulted in issues such as impulse control and behavioral problems. Researchers believe that long-term impacts could include high-risk activity, such as addiction, as well as mental health disorders and low academic achievement.

Previous research has associated high levels of pollution with poor development in the womb, but this study found that these risks occur even when pregnant mothers were living in places with air pollution levels deemed acceptable. This raises questions of whether our air quality measurement standards are adequate and accurate.

Researchers compare this troubling finding with the field’s existing knowledge of the dangers of smoking during pregnancy – Dr. John Krystal, editor of the journal that published the study, draws the parallel that both scenarios involve “inhaling toxins.” We already know that other environmental factors (like stress, lead exposure, and pesticides) can lead to adverse outcomes during pregnancy, but it seems that regulatory policies for some environmental risks fall short of others. Translating research findings to the public – and focusing on productive solutions instead of instilling fear in those with no choice of residence – are key roles for public health moving forward.

Africa Vs. Big Tobacco

Lowering tobacco use has been one of the great successes of public health in the past 50 years, and continues to be a focus of research and intervention. This was achieved through policy and health communication. This journey has shown us that it is possible to change the culture and narrative around behavior, despite steady corporate influence. While tobacco is still a significant public health hurdle in the U.S., there is confidence in the direction we’re headed given what we’ve accomplished.

Unfortunately, tobacco companies are infiltrating other countries with less developed infrastructure for tackling this issue. Currently, low and middle income countries represent 80% of the world’s smokers, as well as smoking-related deaths. Africa in particular is falling victim to extremely powerful tobacco marketing campaigns – smoking prevalence in Lesotho rose from 15% to 52% just between 2004 and 2015, and the industry even manipulated public health policy in Nigeria. Big tobacco is no stranger to targeting advertising strategies to vulnerable groups.

In order to reverse this, we need to support strategies that African countries have already begun to administer. Ghana and Madagascar have implemented tobacco advertising bans; several nations have introduced graphic labels on cigarette packs; South Africa has increased tax on tobacco products; and Kenya has implemented a system for tracking and tracing illicit tobacco product sales.

Already having the knowledge of the danger of tobacco will hopefully help other countries prevent the industry’s hold from strengthening. We must support their efforts before it’s too late.

The Highs and Lows

In the hospital, the nurse told me that by the time I turned 10 they’d have a cure. This voice echoed in my head for years, as I imagined those very doctors and nurses working overtime in their labs, after their long days helping kids like me. Each birthday after the 10th one, I became more and more bitter thinking about that nurse, realizing she had delivered a false promise.

Type 1 diabetes (T1D) is misunderstood, even within the public health field. It’s rare – only 3% of all diabetes cases in the U.S. – and cannot be cured. T1D people live 12 years shorter on average.

T1D is an autoimmune disorder that occurs when the pancreas stops producing insulin. Unlike for Type 2, scientists still aren’t sure why. They have found that some T1D patients share a particular HLA (human leukocyte antigen) complex, but in order for this to trigger an immune response, it has to be triggered by something else, like a viral infection. Because it takes years for the T-cells to completely destroy the beta cells of the pancreas, it can be hard to track.

But this theory checks out for me: I had a nasty virus as an infant, and was diagnosed with T1D 5 years later.

Managing T1D is incredibly difficult. Every variable of everyday life affects blood sugars, and interact with each other such that it’s nearly impossible to know what causes a high or low. Today, by blood sugar was 152 when I woke up, I ate 18 carbs for breakfast, gave 2.1 units of insulin, and remained steady through the morning. Tomorrow, I might wake up at 152, eat 18 carbs, give 2.1 units, and end up with a dangerous low in the middle of an important meeting.

Despite this, I am lucky. I have health insurance, allowing me to have technology that makes it more likely I’ll beat the odds. For the uninsured, the estimated cost of T1D is over $13,000 a year – and that’s just for the bare minimum. What are we doing for the people who need the 6th most expensive liquid on earth to survive, but can’t afford it?

Photo retrieved from: Insulin Nation

Just Trust Me (Part IV)

In the past few weeks, I have illustrated how trust (or lack thereof) shapes the relationship between individuals and healthcare, and how mistrust is historically justified. In this last segment, I want to talk about potential solutions from a social justice standpoint.

Trust is often cited in public health from the angle of paternalism, something that public health is often associated with. When we think of optimal paternalism – using scientific knowledge to influence the health decisions of the general public – we ask ourselves: are we abusing trust, or using it for good?

Public health, while sometimes paternalistic, already stresses to its students the importance of working with oppressed communities as equals to identify and solve problems. Medicine needs to catch up. Many medical students already participate in racial and cultural training, but they need to be trained from a structural angle – to gain an understanding of oppression and policy – too.

We need to support training for healthcare providers that doesn’t shy away from the tough stuff. Hands-on learning, such as tactful poverty simulations, can help. This will allow them to understand things like how the cycle of poverty makes some patients less talkative with authority figures (such as doctors) than others. We need to support minority students in medicine, so that patients can see representation of themselves and feel understood. We need to provide incentives for students to stay in their own communities for residencies. Of course, broad class mobility-enabling policy is the ultimate solution.

Many times, our work seeks to increase trust, but that puts the burden on the patient instead of addressing the reasons behind mistrust. Teaching trust in and of itself is a paternalistic objective: we should instead focus on deserving it.

Just Trust Me: Part III

“You can’t health care-access your way out of this problem. There’s something inherently wrong with the system that’s not valuing the lives of black women equally to white women.” -Raegan McDonald-Mosley

Last week, my post scratched the surface of the history of oppression disguised as medical treatment. Today, I want to talk about how this mistreatment, and the historical trauma that ensues, exhibits itself in patient-practitioner relationships.

Many of us have experienced the helplessness of not knowing how much a medical procedure will cost until it’s over. It’s a terrible feeling: it feels like everyone is communicating without you; ‘above’ you. For many non-white and immigrant patients, this feeling lasts for the entire appointment: from scheduling to decision-making to discharge.

Traditionally, there are four types of patient-physician relationships, each with varying levels of patient power and involvement in decision-making. There is also a distinction between patients preferring an active or passive role in decision-making. Acknowledging the relationship between trust and decision-making preference, these researchers suggest that, for black patients, race may impact both: such that a patient who trusts her individual physician “may have residual mistrust of the health care system that limits [her] ability to relinquish decision-making control.” Cultural differences, as well as fear that the doctor does not have one’s best interests at heart, can influence the relationship between patients and their physicians in Hispanic populations as well.

Racial bias, conscious or otherwise, has been found to influence treatment decisions. Black patients are systematically under-treated for pain due to false beliefs of biological differences between blacks and whites: such as black people’s skin being thicker, or blood coagulating more quickly. This is exacerbated by existing power structures between whites and non-whites, as well as between doctors and patients. In over 200 personal stories from black women of their childbirth experiences, NPR found a constant theme of being devalued and dismissed by medical providers.

Read Part IV here.

Just Trust Me (Part II)

“Dr. X, or whoever she was, she must have been experimenting on me…she left a big scar on my neck … I don’t want that lady to ever touch me again. I don’t like her and I don’t trust her.

Last week, I introduced the issue of trust in the medical setting and how it may vary across scenarios and patient characteristics. But to truly understand why some patients don’t trust the healthcare system, we absolutely cannot ignore the history of their oppression by its hands.

The most well-known medical violation under the guise of research in the U.S. is the Tuskegee “study,” a 40-year-long theft of human rights that, brilliantly and viciously, utilized both government and community-level networks to recruit black men in Macon County, AL. Most had syphilis. The participants, many of whom had never seen a physician, were not made aware of the dangers, causes, and treatment options for their disease. They were not offered informed consent, nor the option to leave the study, and many died.

But Tuskegee is only the tip of the iceberg. Henrietta Lacks’ cells were cultured without her consent during her battle with cervical cancer in 1951 and are still widely used today. Gynecologist J. Marion Sims ran “practice runs” of his procedures on enslaved women. A common belief in the 20th century was that those who could not pay for medical care, many of them poor minorities and immigrants, “owed their bodies” to science. Harry Laughlin performed forced sterilizations on “socially inadequate” Puerto Rican women until the 1970s. The list could go on.

Today, this unfathomable history is manifested in mistrust in healthcare and scientific research. Evidence suggests that black patients are less likely to trust physicians, are more worried about medical privacy and experimentation than are white patients, and are less likely to participate in clinical trials. Some patients are not fully aware of the history to their mistrust – it is a cultural feeling that has been passed down through generations. This is called historical trauma. In addition, racism is still rampant in the healthcare system, both intentional and subconscious, which I will delve into in Part III. These features make this issue even more difficult to address.

Read Part III here.