Using Culturally-Focused Storytelling to Empower Appalachian Kentucky Youth to Understand and Address Cancer Disparities in Their Communities

Abstract

Kentucky has the highest cancer incidence and mortality rates in the nation with the Appalachian region of the state being most affected. These rates are driven by health behaviors and inequities in social determinants of health. Herein, Appalachian Kentucky students with the University of Kentucky’s Appalachian Career Training in Oncology (ACTION) program were engaged in a storytelling exercise by writing culturally framed essays. Students discussed their personal experiences with cancer and their thoughts on the causes of and potential solutions to Appalachian Kentucky’s cancer disparities. Content analysis was used to identify common themes, subthemes, and subtopics in the essays regarding cancer types, causes of cancer in Appalachia, and solutions to the high cancer rates. Common cancer types experienced by the students included breast, lung, and prostate. The most frequently identified themes that drive cancer rates in Appalachian Kentucky were identified as geography, environmental factors, tobacco use, education, poverty, prevention, and mistrust. Common proposed solutions to decrease cancer rates were to increase education and awareness, screening, and tobacco cessation. Overall, through storytelling, youth gained a better understanding of cancer in their communities and envisioned culturally tailored, community-based intervention strategies that can aid in reducing the cancer burden in Appalachian Kentucky.

INTRODUCTION

In 2022, there will be a projected 1,918,030 new cases of cancer diagnosed in the United States, with approximately 609,360 cancer deaths (1). Within the United States, Kentucky leads the nation in cancer incidence and mortality rates, with an estimated 30,370 cases in 2022 (1, 2). The eastern, Appalachian region of the state is disproportionately affected (3).

Residents of Appalachian Kentucky suffer overall cancer incidence and mortality rates that are 4.66% and 17.88% higher than non-Appalachian Kentuckians, respectively (3). Kentucky ranks second in the nation for cigarette smoking prevalence among high-school-age and adult populations (4). The state also ranks first, fifth, and sixth in the nation for obesity prevalence in children, high school students, and adult populations, respectively (5). Further, Kentucky suffers low-levels of preventative screening compliance, for example, ranking 43^th in the nation for up-to-date mammography in women 45 years and older (3). Within Kentucky, the Appalachian region also experiences inequities in social determinants of health that drive cancer rates, such a low education levels and lack of access to healthcare facilities. Many studies point to these health behaviors and social determinants as the cause of the high cancer incidence and mortality rates in Kentucky (3). Appalachian Kentucky consists of a unique population of mostly White individuals (94% of the population is White and 98.2% is non-Hispanic or Latino) (6). The cancer burden in the region may be best understood through the personal perspectives of residents themselves. Such a perspective can be communicated through storytelling.

The ability to convey, consume, and recall stories is a critical component of the human experience (7). Storytelling plays an essential role in human history and provides a frame through which the world is viewed. Appalachians value storytelling as an integral tradition and expression of culture. Appalachian residents have associated their culture with kindness towards others, dedication to family, and commitment to hard work (8). Through generational narratives, the culture of Appalachia is preserved from one generation to the next as values and beliefs are gifted to the next generation. Additionally, storytelling is a useful tool to better understand objective information. Medical charts contain subjective history of present illness that details the context of a patient’s arrival at the medical facility, acting as a personal narrative, and patients convey their need for care through storytelling (9–11). Subjective information is used daily in the field of medicine in conjunction with objective information (11, 12).

Storytelling can be used as a subjective tool in research. Storytelling is a component of narrative research, which is a technique frequently used to obtain qualitative results through participants’ experiences (13). Storytelling has the potential to increase the participation of underrepresented groups in scientific research without offense or exploitation (7). Because certain groups, such as Appalachians, are accustomed to storytelling as a component of their culture, these individuals are more likely to be comfortable participating in a research study that is focused on storytelling (14). Storytelling has been utilized in research to better understand health factors, behaviors, and outcomes such as breast cancer in Chamorro women (15) and cancer screening behaviors in Latina women (16). While storytelling has been used to address many health disparities, there is a gap in existing literature regarding the use of storytelling in Appalachian communities to better understand increased cancer rates.

This study utilizes storytelling as a tool to better understand and address cancer disparities through the written accounts of youth who are participants in the Appalachian Career Training in Oncology (ACTION) Program, which is a National Cancer Institute Youth Enjoy Science Program. The ACTION Program is a pipeline program of the University of Kentucky Markey Cancer Center that engages high school and undergraduate students between the ages of 14 and 21 from the 54 Appalachian counties of Kentucky in cancer-related research education training. It involves students in cancer research, clinical observations, education, and outreach with the overall goal to inspire students to pursue a cancer-related career in Appalachian Kentucky. ACTION students share a passion for improving health outcomes in their communities, and their voices are amplified through the stories they convey.

The objectives of this study are to analyze ACTION participants’ essays to identify how native Appalachian youth experience cancer by determining 1) the common cancer types they have encountered, 2) their thoughts on the causes of the high cancer rates around them, and 3) what they think can be done to solve the region’s cancer problem. The essays allowed participants to share their lived experiences, adding an innovative perspective to existing Appalachian cancer literature, improving the understanding of cancer in the region including providing personal perspectives on potential cancer causes and solutions that could be addressed and implemented.

METHODS

Twenty high school and five undergraduate ACTION students were asked to write culturally framed essays, which are defined as a narrative written with the considerations of one’s own lived experience of the Appalachian Kentucky culture in mind. The essay prompt instructed students to write a 2,000-word essay describing their personal experiences with cancer, their beliefs pertaining to the causes of high cancer rates in Appalachian Kentucky, and their ideas regarding proposed solutions to lowering cancer rates in Appalachian Kentucky. Despite the word count recommendation, the essays varied in length, with some being longer and others being shorter than 2,000 words. Furthermore, the essay prompt was deliberately left open-ended to encourage students to share their lived experiences without the constraints of a detailed rubric. As participants progressed throughout the ACTION program, they learned more about potential causes and solutions to cancer in Appalachia Kentucky from University of Kentucky researchers and clinicians, and this knowledge likely shaped their essays. The students received hierarchical support during the writing process in the form of grammar and syntax revision from the ACTION program director, the ACTION coordinator, and undergraduate peers. Care was taken during the editing process to not alter the students’ “voice.” ACTION participants also peer-reviewed their fellow students’ essays. The essays were published as a book titled The Cancer Crisis in Appalachia: Kentucky Students Take ACTION (17).

After publication, the 25 essays were analyzed using content analysis to identify common themes regarding cancer types observed in Appalachian Kentucky, contributing factors to high cancer rates in Appalachian Kentucky, and proposed solutions to lower cancer rates in Appalachian Kentucky. The analysis of the essays followed the general method of content analysis (18). The essays were first read for overall impression and familiarity followed by a second reading in which thorough notes were taken to summarize significant sentence meanings. These sentence summaries were defined as “meaning units.” Meaning units were deemed insignificant and excluded if they were not part of a narrative and did not pertain to Appalachian Kentucky, cancer types, causes of cancer, or solutions to cancer. A poem within one essay was excluded, and one essay that had content that discussed an area outside of Appalachian Kentucky was excluded. The meaning units were further condensed to codes. These codes were grouped into categories, which were then grouped into subcategories or subthemes and subtopics for reporting purposes. These subthemes and subtopics were further grouped into themes. Combing for significant meaning units was repeated several times with the order of the essays reversed each time to prevent endurance and sequence biases. Three independent researchers conducted the analysis. The first reviewer (LC) conducted the initial, primary analysis. The second and third reviewers (LH and NV) conducted secondary and tertiary analysis of the meaning units, respectively. Collaborative discussion among the three researchers followed to reach consensus regarding identified themes of cancer types, causality, and solutions.

This study was approved by the University of Kentucky Institutional Review Board (Protocol 60277). The analysis of the essays occurred after the essays were published, meaning the study was performed on publicly available material. The requirement for consent from the essays authors was waived by the Institutional Review Board. Engagement of participants with the ACTION program itself was also approved by the Institutional Review Board (Protocol 44637).

RESULTS AND DISCUSSION

The goal of this study is to have students from Appalachian Kentucky explore their lived experiences with cancer, as well as the causes of and solutions to cancer in Appalachia Kentucky, through storytelling. Through analysis, potential causes of and solutions to cancer in Appalachian Kentucky can be addressed and implemented. The cancer types most frequently encountered by the students were, from most to least common, breast, lung, prostate, skin, brain, colon, ovary, bladder, leukemia, testicular, colorectal, kidney, liver, non-Hodgkin’s lymphoma, stomach, and thyroid (Supplemental material, Figure 1). The themes of cancer causality in Appalachian Kentucky identified through content analysis were geography, environment, cultural tobacco use, education, poverty, prevention, and mistrust (Table 1). The contributing factors identified from most to least common were tobacco use, lack of screening, cultural influence, healthcare access, poor diet, coal, tobacco alternatives, obesity, and ultraviolet radiation exposure (Figure 1). The identified themes regarding solutions to cancer rates in Appalachian Kentucky from most to least common were to improve education and awareness, increase screening rates, decrease the use of tobacco, increase healthcare availability, decrease poverty, improve diet, modify tobacco and coal industries, increase exercise, and increase research (Figure 2). The identified themes of cancer causality presented in this study are better understood and more impactful with context and broken down into subthemes and subtopics as presented in Table 1 and discussed below.

Table 1.

Themes, subthemes, subtopics and paraphrased examples identified from student essays related to the high cancer rates in Appalachian Kentucky.

Theme	Subtheme	Subtopic	Paraphrased examples
Geography	Natural resources and industry	Tobacco Coal mines	Men in a family are coal miners because it is the only jobs in the county that provides a sufficient income to support a family. Families grow tobacco as cash crops.
	Decreased access to healthcare	Long distance to quality cancer care facilities Decreased opportunity for screenings, treatment, and routine checkups	A family member travels 2.5 hours one way to receive chemotherapy treatments multiple days per week.
Environment	Water contamination	Carcinogens from coal mines Chemicals such as arsenic, lead, copper, benzene, carbon disulfide, naphthalene, dimethyl disulfide	Individuals feel that something in the water causes cancer. Chemicals are dumped into creeks.
	Reduced accessibility to proper waste disposal and recycling	Commonly burned items such as tires, shingles, and building materials which contain asbestos and lead	Tires are burned in a backyard fire pit.
Culture of tobacco use	Celebration and acceptance of tobacco use	Symbol of heritage Culturally accepted	An Annual Tobacco Festival encourages and celebrates the growing and use of tobacco as a part of the culture of Appalachia.
	Generational tobacco use	Smoking addiction Begin using tobacco as a youth, enabled by elders	A grandmother began smoking when she was six years old because her aunt offered her a cigarette.
Education	Low education as an enabler of participation in high-risk behaviors	Tobacco use Prolonged UV radiation Poor diet Alcoholism Substance abuse	Vaping is “better” or “safer” than smoking tobacco. Individuals do not realize alcohol or obesity can lead to cancer.
	Decreased awareness	High cancer rates in Kentucky Cancer symptoms Recommended screenings	Appalachian Kentuckians are unaware of the cancer rates in the area, what cancer symptoms are and what the recommended screening guidelines are.
Poverty	Decreased health opportunities	Screenings Insurance	A patient’s insurance does not cover preventative screenings, so he cannot afford to undergo a colonoscopy. Some individuals do not have insurance.
	Food deserts and swamps	Elevated consumption of fast food and cheap, processed foods increase obesity rates	It takes 35 minutes to drive to the grocery store, so a family drives to the nearest fast-food restaurant or a convenience store instead. They purchase frozen foods such as pizza bites, or easily accessible foods, such as Ramen Noodles.
Prevention	Lack of screenings due to fear	Desire to not know Negative outcomes are most remembered	A prominent community member discovered that he had cancer after receiving a colonoscopy. Afterwards, another individual refused to get a colonoscopy because he did not want to receive the same news and be pitied by the community.
	Thought of as unnecessary	“Not me” No symptoms	Despite her child urging her to get screened, a mother feels that missing work and spending money on a preventative screening would be a waste of time and money. She feels that she could never be diagnosed with cancer.
Mistrust	Cultural differences	None	A patient feels that the doctor does not care about her because the doctor barely makes eye contact and answers questions quickly with one word, while Appalachians speak slowly while making eye contact and smiling.
	Questioned motives		The doctor said she wants an X-ray just in case, but the patient believes that the doctor only scheduled an X-ray to make more money.

Fig. 1.

Most common student-mentioned factors related to causes of the high rates of cancer found in Appalachian Kentucky.

Fig. 2.

Most common student-mentioned solutions to the high cancer rates found in Appalachian Kentucky.

Discussion of Identified Themes

Theme 1: The Contribution of Geography to Cancer Rates in Appalachian Kentucky

Geography as a cause of high cancer rates consists of subcategories such as decreased access to healthcare, industry, and natural resources. Meaning codes grouped into these categories detailed the experiences of youth’s loved ones who traveled several hours daily to receive treatment at cancer facilities located 150+ miles from their homes. Because of the mountainous geography of Appalachian Kentucky, the population is sparse with more small towns than major cities. Because of the large traveling distance, a large financial and time commitment is required to comply with scheduled screenings or follow-up appointments. This inconvenience and financial burden results in decreased screening compliance and higher cancer rates. Meaning codes also described how geography facilitates the common experiences of their family members who came home every day covered in coal dust. The coal and tobacco industries are prevalent in eastern Kentucky due to the mountainous geography and large plots of land. Such industries are cited as causes of cancer in Appalachian Kentucky because of the inhalation of coal dust and the substantiation of tobacco use.

Theme 2: The Contribution of the Environment to Cancer Rates in Appalachian Kentucky

Environment as a theme is composed of subcategories such as water contamination and reduced accessibility to proper waste disposal. In the essays, family members of the authors were quoted saying, “there is something in the water.” Despite the common use of this phrase as a metaphor, the phrase is taken literally in Appalachia. The essays revealed that Appalachians point to poor water quality and water pollution via coal dust, dumped chemicals, and run-off fertilizer as a cause of carcinogen exposure and consumption. In Appalachia, there is reduced awareness of and access to recycling facilities. Therefore, many Appalachians resort to bonfires to burn trash, wood, and rubber tires, and they dump chemicals like oil in creeks, rivers, ponds, and lakes. Some of the materials that Appalachians burn contain carcinogens that are released when burned, and the chemicals that are dumped increase the risk of carcinogen exposure, leading to increased cancer rates in Appalachian Kentucky.

Theme 3: The Contribution of Cultural Tobacco Use to Cancer Rates in Appalachian Kentucky

Cultural tobacco use involves the subcategories celebration of tobacco use and generational tobacco use. In Eastern Kentucky, tobacco use is considered a symbol of heritage. There is an annual tobacco festival in Lancaster, Kentucky that is known as the Garrard County Rural Heritage Tobacco Festival. Eastern Kentuckians revere tobacco as a symbol of their Appalachian heritage and take pride in the tobacco industry. Synonymous with Appalachian culture, the use of tobacco is passed down through generations, with older Appalachians reporting that a family member gave them their first cigarette at just 6 years old. The essays frequently point to tobacco use as a leading cause of cancer—specifically lung cancer—in Appalachian Kentucky.

Theme 4: The Contribution of a Lack of Education to Cancer Rates in Appalachian Kentucky

The theme of education contains subcategories such as lack of education and decreased awareness as an enabler of participation in high-risk behaviors. Authors identified eastern Kentucky as having low levels of educational attainment, frequently citing that their grandparents did not complete high school. ACTION students state that the number of individuals who seek an undergraduate education is very low in their communities for a variety of reasons, one of which is poverty. Another limiting factor is the distance which one must travel to attend a public, four-year institution. When a student has to move hours away from home, they are also often surrounded by people of a different culture, lack appropriate preparation for college, struggle with financial issues including having low financial literacy, and miss their family support system. It is not uncommon that students drop out of college to return home. Because of the low levels of educational attainment of Appalachian Kentuckians, there are elevated levels of misinformation and a lack of information. As stated in the essays, Appalachians participate in acts that increase their risk of cancer development, such as vaping, smoking, or consuming a diet high in preservatives.

Theme 5: The Contribution of Poverty to Cancer Rates in Appalachian Kentucky

The subcategories of poverty are food deserts and decreased health engagement opportunities. While it may be perceived that Appalachia is a place with access to substantial nutrition and home-grown vegetables, Appalachian youth identify their communities as food deserts. Food deserts are areas with poor access to nutritious food, such as fruits and vegetables. For example, there may only be two grocery stores in an entire county in many Appalachian communities. Because of the far distance from the grocery stores and the limited selection of foods at such grocery stores, many Appalachians can only afford to buy groceries that are high in preservatives. These foods have a longer shelf life, meaning they are more likely to last until the next time they can afford gas money to travel to town. Unfortunately, they cannot afford to travel 40+ miles multiple times weekly to buy fresh fruits and vegetables. Because of the food deserts, Appalachians are also more likely to buy food from fast food restaurants, which are more easily accessible. This leads to a poor diet and subsequent obesity, which has been shown to increase the risk of cancer. Due to poverty, Appalachians also suffer decreased access to health care opportunities. Many Appalachians may not have insurance or may not be able to reach their deductibles to afford preventative screenings or follow-up appointments. Furthermore, many Appalachian Kentuckians may not be able to afford to miss a day of work to travel hours away to receive specialized healthcare. The gas money that is required to travel far distances may exceed the financial ability of the patient, and elderly patients may depend on a family member or caretaker for transportation. The financial burdens that the patient faces are often shared with family members who must miss work to comply with treatment schedules.

Theme 6: The Contribution of a Lack of Prevention to Cancer Rates in Appalachian Kentucky

Prevention includes the subcategories lack of screening and the thought that screening is unnecessary. According to the essays, in addition to financial limitations, many Appalachians do not comply with recommended cancer screenings due to fear of the unknown. The most discussed and remembered screening outcomes are ones in which cancer is diagnosed. Appalachians typically associate receiving a screening with receiving a cancer diagnosis. Additionally, if someone is not experiencing symptoms, they may view screenings as a waste of time and money. Some even experience guilt for investing scarce resources into their own health without any symptoms. Additionally, the idea that bad things only happen to other people is frequently cited as a reason that Appalachians do not receive preventative cancer screenings. Fatalistic mindsets are common among residents of Appalachian Kentucky.

Theme 7: The Contribution of Mistrust to Cancer Rates in Appalachian Kentucky

The theme of mistrust is broken into the subcategories of cultural differences and questioned motives. Cultural differences between patients and doctors can lead to poor health outcomes. According to the essays, many Appalachians have a mistrust of healthcare providers if they do not communicate in the same way that Appalachians communicate. Appalachians typically talk slow while frequently smiling and making eye contact. If a provider is more concise with their words or makes infrequent eye contact, an Appalachian may perceive this communication as rude. The patient will feel that the provider is not truly interested or invested in their concerns. Additionally, the essays described that Appalachians may mistrust providers because they believe that an additional screening or follow-up appointment is a ploy for the physician to make more money.

Similar Research Discussion

These results are consistent with data found in other storytelling-related studies in underrepresented minority groups. A study examining storytelling in immigrant Latino populations revealed that such groups respond very strongly to narratives as a method of disseminating access to health resources (19). Like Appalachians, many immigrant populations have a large cultural emphasis on oral narratives, causing them to be more receptive to health promotion advice in this form (20). A similar study in Hispanic populations found that even digital storytelling helps individuals manage health issues and discover an outlet for healing (21). These related studies bolster the results presented here regarding the importance of storytelling for improving healthcare engagement and access in minority groups.

Additionally, studies also corroborate the results presented regarding barriers and solutions to low cancer screening rates in Appalachia Kentucky. A study including Appalachian participants from 3 states discovered that when compared to Appalachians from Ohio and Pennsylvania, more Appalachia Kentuckians think that cancer screening recommendations are difficult to understand. They also discovered that Appalachia Kentuckians have more residents lacking a high school education compared to Ohio and Pennsylvania (22). An Appalachian-centered study focusing on screening barriers and solutions found that a lack of screening was primarily due to decreased healthcare access, and students suggested involvement of fellow Appalachians may increase screening rates (23). A 2007 study discovered that Appalachians perceive medical jargon and insensitive communication as a cause for mistrust and emotional distance between the patient and the physician (24). This mistrust leads to decreased compliance with care plans and follow-up appointments. When the results presented here are considered in conjunction with the existing body of research, clear barriers to healthy cancer-related behaviors in Appalachia Kentucky can be revealed, and potential solutions can be implemented.

Limitations and Strengths

This study is associated with several limitations. First, storytelling and content analysis are subjective methods of data collection by nature. While significant measures were taken to ensure the accuracy of the results presented, such subjective data may not be reproducible in other contexts. Second, the study is limited in its ability to provide detailed context regarding the themes. Content analysis groups specific information into overarching themes and subcategories. While overarching themes across essays can be a useful research tool, it is important to have knowledge of detailed, specified causes of cancer in Appalachian Kentucky when determining relevant causes and creating intervention strategies. Third, the sample size is small, and all participants were members the cancer-related training program at the University of Kentucky called the ACTION Program. These participants likely have an increased knowledge of cancer compared to Appalachian students lacking this program experience. As such, the ideas presented in the essays may not be representative of a larger population of Appalachian youth from various backgrounds or other non-Appalachian populations. Fourth, awareness of a public audience may have influenced the censorship and the extent to which authors were willing to discuss certain content. For example, a participant whose family heavily relied on the coal industry for income may be hesitant to point to coal as a cause of cancer in her community. Finally, the solutions provided by participants were broad statements, and many authors did not provide a detailed solution. Therefore, further investigation is necessary to provide a detailed, reproducible plan to ease the cancer burden in Appalachian Kentucky.

Despite these limitations, the study also has notable strengths. First, this study focused on a specific population of Appalachian natives: high school and undergraduate ACTION students. The experience that ACTION members had in this exercise improved their abilities to write informed, intentional essays regarding the causes of and solutions to cancer in their communities. Second, the age of participants ranges from 14–21 years old, providing a unique, youthful perspective. Student perspectives as storytellers can promote reflection and education (25), while producing results that are applicable and feasible to community change (26). The narratives of Appalachian youth have the potential to elicit changes in Appalachian communities and promote better health choices to lower cancer rates.

CONCLUSION

Appalachian youth wrote essays within the framework of Kentucky ranking first in the nation in overall cancer incidence and mortality rates, the health behaviors and inequities in social determinants of health that drive the high cancer rates, and their lived experiences of Appalachian Kentucky culture. Through content analysis, it was found that students most commonly referenced breast, lung, and prostate cancer types, while pointing to geography, environmental factors, tobacco use, education, poverty, prevention, and mistrust as the leading causes of cancer in their communities. Through storytelling, they reflected on and narrated the impact of cancer on their communities. Storytelling allowed the youth to better understand cancer in their communities because they were able to describe the key health behaviors and social determinants of health driving Kentucky’s cancer disparities and envision culturally based intervention strategies to ease the cancer burden in their communities. We believe that through this work, storytelling can be recognized as an important method for individuals to conceptualize and communicate the burden of cancer around them as well as to envision culturally tailored intervention strategies.

Future research should further investigate the impacts of the top identified themes of cancer causality in Appalachia such as geography, environment, cultural tobacco use, education issues, poverty, prevention, and mistrust. The identified solutions should also be investigated to identify how realistically these solutions could be implemented and how effective these solutions are for decreasing cancer rates. Future storytelling studies should recruit Appalachian students with lived experiences of a variety of ages, education-levels, and backgrounds to accumulate a more representative and broad collection of proposed causes of and solutions to cancer in Appalachia. As is, the study presents an innovative perspective of cancer causation and solutions in Appalachian Kentucky and should be strongly considered when implementing future research and projects.

Supplementary Material

1788314_Sup_Fig_1

Fig. 1 Most commonly mentioned cancer types encountered by students (NHL, Non-Hodgkin’s Lymphoma).