by Christabel K. Cheung and Court D. Simmons
Each year there are approximately 89,500 new diagnoses of cancer in adolescents and young adults (AYA) between ages 15 to 39 years old (American Cancer Society, 2020). A cancer diagnosis during adolescence or young adulthood generates unique medical and psychosocial needs due to the serious impact on developmental milestones. The AYA patient care population is a severely understudied group that struggles with a lack of improvement in cancer survival rates and relevant care and support compared to their pediatric and older adult counterparts. These disparities prompted the National Cancer Institute (NCI) to sponsor the formation of the AYA oncology specialization in 2006. As it did so, the NCI articulated specific research and care imperatives to address this major health problem (US Department of Health and Human Services, 2006).
Since then technological advancements in oncology have led to a building cadre of AYA cancer patients who outlive their prognoses and feel compelled to contribute to the creation of scientific knowledge on their condition. For many of these AYAs the benefits of technological success are accompanied by burdens such as life-changing physical, psychological, and/or social consequences across the remaining years of their lives. The age-defined, disease-agnostic specialization of AYA oncology grew from urgency within medicine to derive greater evidence on the life-long psychosocial consequences of biomedical innovations uniquely affecting this patient care population whose youth means patients must carry their disease and its effects across several formative life stages. Some of these AYA oncology trailblazers were themselves former cancer patients. They were inevitably met with the presumption that their lived experiences implicated them in inescapable investigator bias. In this narrative we challenge and refute the assumptions behind this presumption.
BIPOC (Black, Indigenous, or person of color) and SGM (sexual and gender minority) cancer patients justifiably harbor concerns about bias that impacts the practice of medicine. They regularly experience race-associated and/or gender-associated biases that disproportionately and negatively influence health outcomes. Well-established literatures directly link higher levels of negative implicit bias among clinicians with biased treatment in the care of racial minorities (Crear-Perry et al., 2020; Dehon et al., 2017; Hardeman et al., 2020; Paradies et al., 2014; Williams & Wyatt, 2015) and sexual minorities, including lesbian, gay, bisexual, transgender, queer, intersex, and all SGM people (Fallin-Bennett, 2016; McDowell et al., 2020; Sabin et al., 2015).
The literature on racial bias in healthcare presents evidence of racial bias embedded in the norms and expectations of medical training where it is absorbed by trainees and subsequently negatively impacts the racial biases of individual physicians in practice (Onyeador, 2020). For example, prior studies show that trainees who heard negative comments from their attending physicians or other residents were associated with greater explicit (Burke et al., 2017) and implicit (van Ryn et al., 2015) racial bias. The literature on SGM bias in healthcare consistently identifies gaps in clinicians’ knowledge as threats to quality care for both adolescent SGM in general healthcare (Hafeez et al., 2017) and SGM cancer patients (Cathcart-Rake et al., 2019; Clarke et al., 2019).
The purpose of this study is to counter criticism that calls into question the trustworthiness of embodied inquiry in social science and medicine. We do so by introducing our embodied research approach through two in-depth case examples focusing on experiences of bias and disparities in treatment and outcomes. Our rigorous and transparent methodology demonstrates the empiricism of embodiment in the process of research topic selection and prioritization within two psychosocial domains in AYA oncology. The psychosocial domains of race and gender are especially salient to the experience of bias and disparities among BIPOC patients. In addition to modeling the practice of embodiment, we discuss the benefits and risks of our approach through our case examples. We propose how our results might inform the advancement of embodied research methods and AYA oncology.
How We Came to Study AYA Oncology
It was horrible. I, Christabel, was standing in line at the post office, when I got a call on my cell from a doctor that I had never seen before. He was pinch-hitting for the doctor that I had gone to see the day before, because I thought I had the flu or mono. Anyway, this doctor whom I had never met before told me over the phone that I had “a type of cancer called lymphoma.” The call dropped. I had to race back to my desk at work to call him back. And the rest of what he said was just “blah, blah, blah” to me. To this day, I have never met the doctor who told me I had cancer.
I came to study AYA oncology, because I had lost everything to it. I had nothing left to lose, and everything to gain – including health insurance – from learning about the thing that took it all away. Across the years when my body was hosting the devastation of cancer and its aggressive treatments, I had no idea that I was an AYA – no knowledge that AYA oncology was an emerging age-defined and disease-agnostic specialization aimed at addressing some of the things that terrorized me. I thought I uniquely struggled with the misfortune of near death by suffocating tumors, day-by-day survival with accelerated aging, and increasing tolerance for cancer interventions designed for Boomers. I struggled so much as a cancer patient cursed with refractory disease that continued to spread despite drastic measures. I felt like my needs, as a 32-year-old threatened by imminent mortality, were not common enough for society to care about. I don’t think anyone can know what it’s like to be a patient until it strikes them personally, which means that many of the people who make decisions and provide care are not fully aware of the impact of their actions on the lives of real people.
After I finished cancer treatments for my second diagnosis of Hodgkin’s lymphoma, I was recruited to substitute for one of my former lecturers at the University of California, Berkeley, my alma mater. While I was on the teaching faculty at UC Berkeley, the former dean of the School of Social Welfare sat me down one day, and asked why I wasn’t getting my PhD. He talked to me at length about what I would be getting into, and most importantly, he encouraged me and said that he believed in my ability to make a meaningful contribution to research on cancer survivorship. After I began doctoral studies, I was gifted with academic mentorship from Dr. Brad Zebrack, a leading AYA oncology scholar who openly identifies as an AYA cancer survivor. I got into studying AYA oncology through mentors who had a vision of me thriving and who believed in me before I did. Me, a GED kid, who always felt like an imposter in the halls of academia—and even more of an imposter there after two cancer diagnoses. That’s how it’s been ever since. I’ve continued to find generous mentors who believe in me as a social scientist.
I, Court, was sitting on the edge of the crunchy bed of the exam room, just two weeks after Mom’s death. The orthopedic surgeon calmly sat on the rolling chair, and referenced an MRI of my lower extremities. There was a grapefruit-sized mass that lit up like fireworks on New Year’s Eve. My eyes lost focus, while the entire room halted and sped up at the same time. I felt my body sinking into impermanence while I tried to retether to his words smashing into my ears. I didn’t manage to hear much of what he said. All at once, I witnessed my own birth, the first time my Mom held me; and all the pain I’d ever experienced in my life hit me in my chest. The orthopedic surgeon said, “There are three possibilities we’re looking at here. It could be an infection, a benign tumor, or something that we call malignant. Given your family history, we’re gonna want to run some more tests before you leave today.” The thing is, I understood the definition of malignant, and I knew that it was cancer before those 48 long hours in that drafty blue gown. The despair and uncertainty coursing through my veins was eerily familiar.
Cancer entered my realm in 2005, when Mom, a single mother of three, revealed her cancer diagnosis of a soft-tissue sarcoma. After an emergency brain surgery a year later, my elder sister, Christina, was diagnosed with a malignant glioblastoma at the age of 16. She died the following year after a grueling treatment of radiation and chemotherapy. The following year, my family was diagnosed with a rare cancer predisposition called Li-Fraumeni Syndrome. Finally there was a tangible explanation as to why my family DNA was jumbled and why our family was riddled with cancer. Right after that, Mom was diagnosed with another sarcoma. Mom never got a respite from cancer. She endured the loss of physical parts of her body through radical surgeries in an attempt to remove the cancer, and a larger part of her soul, after we buried Christina from the same disease. In the spring of 2011, Mom’s cancer metastasized into her lungs. She died on Christmas Day of that year.
So, yeah, even as a 16-year-old kid, I’d seen how cancer destroys dreams and knew to prepare for the worst. After a biopsy, I was diagnosed with osteosarcoma impacting my proximal tibia, knee, and femur. I thought about death every day for 210 days of my life. Almost every day I ingested a lovely cocktail of Doxorubicin, Cisplatin, and Methotrexate. Then vomiting. Then missing Mom. Then neutropenia (low white blood cell count). Then crying. Then at the first peek of the sun, a rush of residents and chatter accompanied with a finger in my butt assessing for sores. A loss of appetite. An intense craving for crab cakes and an Oreo milkshake. Then vomiting. Then missing Mom’s cooking and my eyes leaking self-pity. Then sleep, not rest for 210 days.
I was forced to come to terms with my undeniable mortality before I had even developed my identity or sense of self. I stumbled into the existence of AYA oncology on my personal journey to eudaimonia or “the highest state of human flourishing and prosperity” (Robinson, 1989). After cancer ravaged my lineage, I sought repair, reparations, and understanding. I have committed my life to advocating for AYA patients. I believe in radical healing for us all during our physical existence.
Audre Lorde said, “What is there possibly left for us to be afraid of, after we have dealt face-to-face with death and not embraced it? Once I accept the existence of dying, as a life process, who can ever have power over me again?” Even today, over ten years after my first encounter with cancer, I have just begun to heal from the trauma and grief associated with my intimate relationship with cancer. Twenty months ago, at the age of 24, I was diagnosed with triple-positive breast cancer. Here we go again.
Despite having lived through drastically different experiences and embodiments of cancer, we (Christabel and Court) commonly find ourselves checking the same socio-demographic box when we participate as either research subjects or research advocates in AYA oncology. We are crudely lumped together as: “non-white, cancer patient, diagnosed between ages 15-39 years.” Technically, these identifiers are accurate. Court is the B in BIPOC (Black, Indigenous, or person of color) and the first A in AYA (adolescents and young adults) whereas Christabel is the POC in BIPOC and the YA in AYA. We were both diagnosed with cancer twice within the AYA age range of 15-39 years. We are the minoritized cancer patients whom oncology researchers typically identify as hard-to-reach subjects yet whom those same researchers rarely invest additional efforts and resources in to recruit from the margins.
In the rare oncology studies that do mention BIPOC AYAs, we are rarely featured among the results. There are too few of us in study samples to achieve adequate statistical power in quantitative approaches. Not enough of us to reach data saturation in qualitative examination. Instead we are usually mentioned in a simple sentence describing the study’s limitations. These sentences have the ring of researchers alleviating any culpability they may feel for our exclusion. This formulaic sentence routinely states that the investigators did not capture enough socio-demographic diversity to observe associations based on participant characteristics such as race and gender, but recommend that future studies should. The medical community’s long history of accepting such brief, perfunctory justifications for systematic exclusion of minoritized populations exacerbates the very tokenism that it seeks to ameliorate. The advancement of embodied research in oncology, led by patient-turned-scientists, is needed to catalyze patient-centered empirical study, thereby sharply increasing the quantity and magnitude of BIPOC AYA diversity, equity, and inclusion in oncology research.
Embodied Researchers as Black Swans
Embodied research in the social sciences is defined as a scientific method led by stakeholders of the research question that aims to derive empirical evidence that could not otherwise be found (Chadwick, 2017; Spatz, 2017). In a prior study four potential benefits of utilizing embodied researchers in psychosocial oncology research on AYA patients were identified: (1) improving research design, implementation, and the dissemination of results; (2) contributing to transdisciplinary knowledge, since the lived experience of cancer is not bound by the limits of a particular professional perspective; (3) ensuring fidelity to both evidence-based practice and practice-based evidence; and (4) enhancing sociocultural considerations by naturally responding to current and upcoming AYA age cohorts and generational contexts (Cheung, 2018).
Whether personal experience precludes embodied researchers, i.e. patient-turned-scientists, from accessing the requisite scientific objectivity to conduct psychosocial oncology research remains contested by academic critics. The contestation lies between disembodied traditions of empirical investigation within the positivist paradigm of medicine and emerging naturalistic methodologies of embodied research in the social sciences. At the heart of this conflict are differing opinions as to what constitutes scientific objectivity and how it is secured. According to the positivist paradigm of quantitative research, scientific objectivity is defined as the extent to which research projects are undistorted by the biases of researchers (Given, 2008). According to this model scientific objectivity must be obtained from a distance. In contrast, embodied research methods embrace the subjectivist orientation of qualitative research. Embodied research questions assumption that the positivist definition of scientific objectivity can ever be achieved.
Maurice Merleau-Ponty (1968) rejected the notion of a duality between mind and body, and defines the investigator’s body as intrinsically subjective and objective. More specifically, Thanem and Knights (2019) describe the mind as being incapable of capturing content on social phenomena from a distance. Furthermore, the authors reject disembodied traditions’ assumptions that subjects cannot make sense of their own condition, but rather, must rely on scientists with no relation to their circumstances to make sense of their experiences for them (Thanem & Knights, 2019). At stake in these contestations is the future of embodied research and the scientific value accorded evidence derived by patient turned scientists.
We defend the position that scientific objectivity is as much a fallacy as scientific proof. Just as it takes only one appearance of a black swan to debunk so-called scientific proof that all swans are white, it takes only one personal connection to cancer to call the ideal of scientific objectivity into question. If we really held fast to the positivist ideal of scientific objectivity, we would ask oncology researchers who enter the field with no prior lived experience of cancer to exit the field if and when they themselves are diagnosed with cancer. Is it not possible that embodied researchers are the metaphorical black swans of the research enterprise? Are they not potentially positioned to open our minds to crucial research questions concerning the impact of social lives on cancer care and outcomes?
Trustworthy Embodied Methods
In this study we employ rigorous and transparent embodied methods to generate research questions for the investigation of high-priority psychosocial issues related to race and gender in AYA oncology. Our methodological approach includes engaging in written reflexivity, reviewing extant literature, conducting data analyses, and generating resulting research questions on issues of race and gender within AYA oncology.
First, our embodied approach begins with each of us individually writing reflexive statements in response to three questions: (1) How did you come to study AYA oncology? (2) How do race and AYA cancer intersect for you? (3) How do gender and AYA cancer intersect for you? This initial step characterizes our analytic lens in this examination. We also establish our value as embodied researchers who can serve as instruments of data collection and analyses, as well as sources of embodied evidence from our own experiences of cancer.
In conventional practice qualitative approaches that engage researchers in written reflexivity do so as a mechanism to subsequently bracket out this background. The task is completed as if to disclose and then purge potential conflicts of interest before the research at hand begins. The problem with bracketing is that it assumes that humans are capable of divorcing themselves from their embodied experiences. We do not believe this is truly achievable. What’s more, the danger of bracketing is that we would be blocking ourselves from considering embodied data that may be illuminating evidence. In contrast, we demonstrate a call-and-response method of embodiment that optimizes the flow of personal information, and carries information from lived experience through its transformation into embodied data that can be used to pose systemic questions related to issues of race and gender in AYA oncology.
Not all lived experiences are embodied. Deriving embodied knowledge from our social worlds requires consciousness, attunement, and willingness to make meaning from life events. In the case of living with the disruption and sequelae of a cancer diagnosis, embodied researchers must be willing to lean into the discomfort of past traumas. This may require re-experiencing pain and suffering in its re-telling. For this reason, our embodied research approach allows space and time across this study for us to process latent emotions stirred by our research either separately or together through open dialogue. This essential step has proved beneficial to all stakeholders. It has enabled deeper data analyses, insights for future investigations, and personal healing and rejuvenation.
Following our reflexive process, we individually code our written reflexivity into words and phrases that transform information from our lived experiences into the textual data of embodiment. Next, we jointly conduct content analysis of textual data to abstract themes via five audio-recorded discussion sessions to verify meaning and precision of language through member checking, and to ensure interrater reliability. Finally, emergent themes are used to develop high-priority research questions in the domains of race and gender in AYA oncology.
Figure 1 – Emergent embodied themes among co-authors on issues of race and gender in AYA oncology
Figure 1 displays emergent themes from our embodied data. The clipboard image at the center includes three themes: non-white, cancer patient, and 15-39 years old. These are the categorical labels commonly used in AYA oncology research to describe us. On the left and right, are textual codes in gray font that describe our individual embodied positionality in relation to the intersections of race and gender in AYA oncology. Christabel is represented on the left; Court is on the right. The terms bolded in black font at the center encircling the clipboard image are emergent themes representing shared aspects of Christabel and Court’s embodied positionalities. These shared themes characterize our analytic lens and the embodied knowledge that we bring to the current selection of research questions: BIPOC, AYA, Eurocentric healthcare, racialized medical industrial complex, chosen family, codeswitching, unnecessary suffering, social science scholar, infantilized, and ambiguous loss.
Selection of a Research Question on Race and AYA Oncology
Developmental psychologists describe BIPOC AYAs’ experiences of discrimination related to being a racial/ethnic minority as an expanded adverse childhood experience (ACE). This phrase designates a psychological trauma associated with individual- and community-level stressors (Svetaz et al., 2019). These patients are concurrently challenged to cope with racial trauma and life-threatening illness, whilst still learning life skills in their passage from childhood to adulthood, or whilst managing the responsibilities of early adulthood. Despite a large body of long-standing evidence of racial/ethnic disparities in healthcare outcomes (Crear-Perry et al., 2020; Dehon et al., 2017; Hardeman et al., 2020; Paradies et al., 2014; Williams & Wyatt, 2015; Williams et al., 2016), the preponderance of AYA oncology research to date defines the AYA patient population solely in terms of chronological age and life stages in human development without including patients’ racial/ethnic characteristics or considering their potential impacts (Levin et al., 2019).
Christabel: I was packing my trusty purple rollie bag to prep for discharge from yet another torturous residency of stem-cell-mobilizing chemo in my bone marrow transplant process, when a white-presenting nurse came into my room and asked if my brother was coming to pick me up.
“I don’t have a brother,” I said matter-of-factly.
“Oh, Okayyy,” she said, in a patronizing sing-song tone commonly directed at small children who can’t be trusted. I was still in the early yawn of awakening from a heavy Haldol cocktail sedation. I forgot that I had lied earlier about my Indigenous Latinx friend being my brother so that he would be permitted to enter the bone marrow transplant unit. I needed him to be able to talk to the doctors and nurses about my care. Luckily for me the nurse assumed that she was encountering the pharmaceutical side effects of treatment and not the real me.
Being a cisgender Chinese-American woman whose childhood was split between Hong Kong, London, and the Detroit area meant living with cancer behind a scrim of grossly inapplicable stereotypes including that of a model minority gifted with substantial social capital from extensive family and community networks. Such stereotypes supply cancer care providers with the underlying assumption that no matter how bad things get for Asians, their fundamental condition is not so bad. It assumes that Asians have overbearing Asian families or friends that will step in to provide informal support. Beyond that there’s the further assumption that Asians are intrinsically equipped with an ethic of hard work that will allow Asian cancer patients to successfully persevere through their treatment.
A central truth to my existence is that I originated from an unstable family background. I left home for the first time when I was fifteen-years-old, dropped out of high school at 16, and got my GED at 17. I have been in and out of communication with my family of origin ever since. They were never involved in my cancer care. Instead, I had a “chosen family” of helpers, who were racially diverse.
The thing about families of choice is that they are moving targets, bound by the time and geographies of the life stage and conditions in which we become acquainted with each other. For better and for worse, chosen families do not have the inextricable permanence of biological ties that bind them to duty. When the start of my bone marrow transplant process was delayed by several months due to health insurance problems, the chosen family that I had originally lined up to help me through my back-and-forth residency of in-patient sterile isolation on the bone marrow transplant ward was no longer available. High-functioning people are usually busy people—one auntie had to travel for work, another had long-awaited vacation plans, and everyone had to keep living their own lives. Chosen family members have their own families, and try as they might, they cannot fully include an outsider even if they are racially similar to you.
Court: Today, I took the train to visit a new physician. As a trans person, much of my gender euphoria is dependent on my ability to express myself through my fashion. I chose my outfit with intention today. I accessorized my black cuffed jeans with leather boots and a fitted snapback that coordinated perfectly with my outfit. Today, passing meant that people didn’t scan my crotch in search of a bulge while I rode the train. Passing also meant acknowledging that today, the rest of the world would read me as a Black man, and that could prove itself dangerous too. Passing also meant that white parents turned their children away in visible discomfort when I smiled and waved. I’ve always had to be conscious about what my visual appearance and the cadence of my voice communicated to my medical providers before I was afforded the opportunity to make a true impression and before I could get an accurate sense of how I was being perceived. As a Black and visibly trans person, I’ve had a lifetime of Olympic-style preparation in codeswitching and navigating the racialized medical industrial complex.
He managed to avoid eye contact while he introduced himself, sanitized his hands, and logged into my chart. His eyes darted across the screen in discomfort, making it obvious to me that he was not well-prepared. The list of my medical complications goes on. He bypasses the notation of chronic pain and states that he won’t be able to prescribe me opioids. I chuckle to myself. He continues to read the list out loud until he arrives at a condition that he has never encountered. I gently correct him although he hasn’t yet made eye contact. He opens a new web page and begins a google search. I sit up tall in my seat and clear my throat. I explained the disorder, the specific genetic mutation, associated interventions, and protocols. I watched his eyes perk up, and he finally turned to face me. I didn’t stop for 20 minutes. When I did, he smirked and said, “Wow, I am impressed. Maybe we should switch seats, and you can do my job! Where did you pick that up?”
I went to the ER for a suspected pulmonary embolism. The resident came in: “I spent some time reviewing your chart, and boy is it extensive. This is a good start! I did have one question. I see the methotrexate here, but I don’t see a date for the abortion. When was that, so I can notate it?” I was 17 years old, and had never been pregnant. The nurse was looking at a bald and Black 17-year-old kid in the ER for a pulmonary embolism, and inferred that a common chemotherapy treatment was used for early abortion. What do you think informed her assumption?
Our review of prior research and the content analysis of embodied data from our reflexive statements have resulted in the identification of emergent themes of crucial clinical significance at the intersection of race and AYA oncology. These data-informed themes led us to develop a high-priority qualitative research question related to issues of race in AYA oncology:
How can cancer care providers minimize the risks of being minoritized within the healthcare system for AYA cancer patients who experience racial trauma?
Selection of a Research Question on Gender and AYA Oncology
Adolescence and emergence into adulthood are crucial developmental periods for the formation of sexual and gender identities. Complications with gender identity development may arise with AYA cancer patients, as they contend with the physical effects of cancer treatments and the complexities of puberty (Levin et. al, 2019). Today’s AYAs live in a social context where both sexual practices and gender identities are increasingly expressive and less fixed. This means that these patients’ goals for intimate relationships and reproductive health may not be captured by heteronormative trajectories of human development (Pratt-Chapman, 2020). Cancer care providers must be prepared to foster therapeutic alliances with LGBTQ+ AYAs that prioritize patient communication and trust in settings that allow for genuine expressions of need.
The scarce literature to date on LGBTQ+ AYA cancer patients highlights disparities in cancer outcomes that are associated with behavioral risk factors and health care system factors. These include lower access to health care insurance, discrimination in non-affirming care settings, and negative health care interactions with providers (Kamen et al., 2020). When accessing health services, LGBTQ+ AYAs are often overlooked. They experience unique barriers to sufficient care. Such barriers include heteronormative and binary healthcare environments, complexity surrounding disclosure and confidentiality of sexual and gender identities, and gaps in clinicians’ knowledge about LGBTQ+ health issues (Clarke et. al, 2019). It is imperative for AYA cancer care providers to understand that sexuality, sex practices, and gender identity are all deserving of clinical attention and may be influential in cancer outcomes (Kano et al., 2020).
Christabel: Before cancer, all of my healthcare providers were Asian American women. After graduating with a bachelor of journalism degree from the University of Missouri, I migrated to San Francisco with the dream of living in community with other Chinese Americans. San Francisco was the epicenter of Asian American and Pacific Islander (AAPI) activism. I had previously lived in cultural isolation for many years, as an immigrant kid coming up in the Detroit area and also as an undergraduate in Missouri. In the Midwest, I was forced to tolerate overt orientalization, hypersexualization, and fetishization of my still-growing physical body. In San Francisco, it was easier to avoid most of these stereotypes in my clinical encounters by finding qualified Asian women to address almost all my personal needs. (Asian Americans make up more than one-third of the city’s residents.) This was all possible until I had cancer.
My first cancer diagnosis was intervened upon by a white male oncologist. He failed to prioritize a fertility consult for me before I was treated with chemotherapy that would likely sterilize me. He dismissed and demeaned my reports of experiencing severe pain by telling me that “there were worse things I could have than lymphoma.”
When my second cancer diagnosis hit, I focused doggedly on searching for an Asian female oncologist to save my life. Racial match was important to me, despite mixed experiences with Asian American clinicians including the physician who obfuscated responsibility and left her colleague to communicate my initial cancer diagnosis to me by phone. My online searches had me returning to two particular profiles. One was a young intern, who presented as Asian and female. The other was an accomplished oncologist, who presented as white, male, the director of the cancer center’s adult lymphoma program, and a leading expert on AIDS-associated lymphoma. I chose the latter, prioritizing experience with cancer survival over experience with Asian woman survival. I held my breath, and figured the best I could do was assume that this physician held some degree of cultural humility, given his AIDS-associated expertise.
Still, even though he turned out to be an excellent oncologist, I never raised my concerns about the sexual side-effects of cancer and its sequelae. I didn’t want to be perceived as contributing in any way to reinforcing sexual stereotypes or to the fetishization of Asian women as hypersexual. I didn’t want to go there with a white man.
Court: Due to my underlying disease, I started routine breast cancer screenings at the onset of puberty. At first, these screenings consisted of a manual exam performed by a middle-aged white man while we awkwardly navigated small talk. Yes, it was as strange as you feel right now hearing it described. I was able to tell him that “I didn’t want to be a girl anymore” from the time I was a toddler. I practiced straddling the toilet mimicking my brother and modeled my behavior after men on my favorite TV shows. I came out as a trans nonbinary socially at first; then to my family. By my 24th birthday, I’d finally saved enough money to get gender affirming top surgery. I found a surgeon who would at least honor my chosen gender pronouns. The surgery served both as treatment for cancer and affirmation of my gender). And then I receive a date for the surgery. And reassurance that if I didn’t have boobs, I also couldn’t get boob cancer. I met a new oncology breast surgeon. He would handle the biopsy of the breast tissue that illuminated during my most recent MRI, and leave the plastic surgeon to masculinize my chest. His conviction is imprinted in my memory saying, “Given your family history, we’re doing the biopsy as an extra precaution. I’m confident it’s nothing.”
I tried to sit up after surgery and felt like I was gonna pass out from the pain. Through the fentanyl fog, I could see two huge draining bags of blood hanging from my sides. Then, I passed out. Then awake at 2:00AM to practice getting my boxers up alone. It’s impossible. Then empty drain bags. And daydream about the warmness of a topless summer day. Then a notification from my patient portal. It’s an email from my care team. “Hi Court. I hope you are recovering well from your bilateral mastectomies. I was pleased to see that there was only a tiny amount of cancer.” That sounds like some type of greeting card for a significantly less momentous occasion. Certainly, it was cancer. This was supposed to be my declaration of freedom. The cancer becomes the center of attention, yet again. Then wishing I could lie in Mom’s lap. The room flips upside down, and I feel myself floating away. When I listen closely, I can still hear her saying, “It’s gonna be alright, baby.” Then empty drain bags.
Following the same procedures we used for the topic of race in AYA oncology, we produced the reflexivity recorded above on issues of gender in AYA oncology. We reviewed the few relevant literature and conducted five in-depth audio-recorded debriefing sessions to conduct content analysis of our results. We then extracted major themes from our debriefing sessions on gender and AYA oncology and used them to formulate a high-priority quantitative research question:
What factors in healthcare provision are associated with health-related quality of life for AYA cancer patients who identify as transgender?
We Are Black Swans
By engaging in rigorous embodied research methods, we derived the aforementioned qualitative and quantitative research questions to examine high-priority issues of race and gender in AYA oncology. Our statements of reflexivity revealed how we each came to study AYA oncology, as well as how we describe our respective positionality in relation to race and gender in the cancer context. These descriptions served the dual function of providing information that was transformed into our textual data of embodiment, and characterizing the lens we used to consider potential topics of inquiry. In routine practice, the process of selecting a research question is usually not held to any explicit standards. Our embodied process however presents transparent and systematic procedures that can be replicated in future research.
As the result of this study we identified several major benefits of employing embodied research techniques, while, at the same time, we also took steps to minimize risks (Cheung, 2018). The research questions that resulted from our embodied process hold promise for contributing to transdisciplinary knowledge in AYA oncology. We proposed qualitative inquiry of cancer care provision in the context of racial trauma and quantitative inquiry of unique factors related to health-related quality of life for patients who identify as transgender. Additionally, fidelity to both evidence-based practice and practice-based evidence was observed in our formulation of our two core research questions. These research questions incorporated crucial sociocultural aspects of the AYA experience. The primary risk in utilizing an embodied research method is to overgeneralize one’s personal experiences. In this study we minimized this risk through debriefing sessions in which we clarified our analytic lens and interrogated each other’s assertions. We reviewed the extant literature on the intersections of race, gender, and AYA oncology to broaden and situate the embodied knowledge we brought to these areas of cancer care.
As two BIPOC researchers, we shared experiences of being minoritized within healthcare systems that were not designed to prioritize some of our most pressing needs and concerns. We faced our own mortality through physical traumas at a younger age than most. Through our differences we each became distinctive black swans who were able to productively challenge the normal assumptions underlying normalized AYA oncology research protocols. Our status as black swans contributed greatly to the development of our core research questions. As black swans we are unpredictable and improbable yet nevertheless real patients whose experiences entailed severe consequences for ourselves. Our experiences as patients and researchers have important implications for the healthcare systems we must survive within. The contributions of our embodied research method are needed if the AYA oncology community aims to create a more accurate assessment of appropriate patient care after a cancer diagnosis in the AYA years.
Conclusion
The advancement of psychosocial oncology research to benefit BIPOC AYA patients necessitates BIPOC AYA embodied researchers. Embodied research that harnesses patient wisdom is an effective way to utilize exclusive access to the evidence possessed by BIPOC AYA patients. Such evidence can and should be used to eliminate unnecessary suffering for other patients. Research topic selection and prioritization will especially benefit from employing the embodied research questions and perspectives we propose in this study. Future research should focus on the urgent qualitative and quantitative research questions our embodied approach suggests have important implications for other research activities including study design, conduct, dissemination of results, and evaluation.
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