Embracing Subjectivity: An Autoethnographic Account of the Lived Experience of a Nigerian Cancer Ethnonursing Researcher

Through this article, I advance the conversation on conducting cancer-based ethnonursing research among underreported populations by examining the challenges and lessons learned from an ethnonursing study in a Nigerian cancer care setting. Nigeria's population is estimated to surpass 200 million, making it the seventh most populous country in the world and the most populous Black country in the world,1 with more than 250 ethnic groups and more than 510 languages. Nigeria is facing a massive rise in the incidence of new cancers. Unfortunately, its public healthcare system faces significant challenges, with a heavy reliance on underfunded services and limited access to affordable cancer care.2 The survival rate of people with cancer in Nigeria is far lower than that observed in high-income countries because of late presentation, inadequate number of cancer care specialists, lack of functional equipment, lack of standardized training for oncology nurses, and high level of poverty.2 Cancers in Africa are widely unacknowledged, resulting in widening and diverging gaps between African and Western oncology.3 There is also disparity in the allotment of cancer-related funds, technologies, and drugs, with predominant attention paid to the developed Western world. Unfortunately, Nigerian cancer patients are victims of progressive disease and contend daily with life disturbances. The subjective experiences of hospital treatment in varied socioeconomic contexts are inadequately documented. In 2019, I conducted an ethnonursing study to explore the contextual issues associated with cancer care in a Nigerian cancer care institution. I immersed myself in the hospital environment for 6 months while studying issues within the cancer care space. I became involved with and actively learned from the nurses, cancer patients, physicians, and relatives about their beliefs, values, and cultural care practices and how these intersect with cancer care interventions. I maintained an active curiosity about whatever was seen, heard, or experienced, with sensitivity regarding both the insider (emic) and outsider (etic) views.4 This research was conceptualized with many hopes and expectations, but at some point, I began to respond to questions about my research with dread. Throughout the period of data collection, I could not say precisely if the study was going badly or if the research was good. However, the situation was horrible, and I was sad and angry that many of my fellow citizens, nurses and cancer patients, found themselves in a situation of adversity and constant struggle encapsulated by multiple cultural realities. Many participants described treatment and cancer as suffering. Pain and difficulty when eating due both to the disease and the treatment were the main drivers of the patient's experience of the hospital as an unpleasant place to be. It was a place where they continuously relived the difficulties of daily life brought on by cancer. To the patients, hospitalization meant an uncomfortable relocation to an unfamiliar hospital and environment with material and emotional hardships. Restoration and sustenance of cancer patients' well-being are often uncertain. Hospital staff often held subtle reservations about the possibility of a sustained positive outcome of medical intervention in what nurses described as "futile care." Patients and hospital staff alike drew on their religious beliefs to sustain their hope and resilience, but the limitations of healthcare facilities and medical knowledge of cancer rendered both health workers and laypeople helpless. I had thought of fieldwork as something ethnonursing and ethnographic researchers were supposed to love doing. I felt that if I dreaded continuing to explore the cancer care situation in Nigeria, there must be something wrong with me. It is, however, essential to recognize that fieldwork of this nature and in this context can hurt. I constantly witnessed the death of patients, the grief encountered by relatives, and the nurses' feeling of inability to help. These encounters were overwhelming. During fieldwork, researchers are generally encouraged to keep writing and produce meticulous field notes, but in this study, trauma complicated the process of remembering and the act of writing. Moreover, the trauma kept resonating in my mind each time I read my data. I constantly had to deal with paradoxes and dilemmas in the sense that I had to read and familiarize myself with the study data, but I also had to pay the price of rekindling and reliving the pain and heart-wrecking memories of the agony the cancer patients, relatives, and nurses in Nigeria are experiencing through their narratives. I hope that through this research I can do my honest part in helping to bring a solution to the present situation of cancer care in Nigeria. While preparing for this study, I became cognizant that the circumstances I would observe and participate in are neither completely foreign nor familiar. I anticipated that my perspective and application would fluctuate between the etic and emic views, and so would my status as an insider or outsider within the study environments. I further anticipated that this shift would be directly linked to the fact that I am a nurse, observing the work of other nurses and healthcare personnel. Methodologically, I encountered a series of challenges. At the outset, I had much doubt if I would be able to proceed and bring the study to completion until I had a mind-blowing interaction with Dr Hiba Wehbe-Alamah, a renowned ethnonursing scholar trained by Dr Leininger. She gave me specific directions on how to go about my seemingly complex study. On several occasions, I interacted with other Leininger-trained ethnonursing researchers, such as Dr Marilyn McFarland, Dr Marilyn Ray, and Dr Sandra Mixer. Dr Jean Watson was also instrumental in this process. When I arrived at my field site, my research tradition seemed strange to the people because everybody associated academic research with distributing some surveys. On several occasions, health professionals thought I came to appraise their performances, and some thought I was an investigative journalist because they noticed that I was always writing. However, with constant explanations and clarifications, they began to appreciate the beauty in the ethnonursing research method and rendered their full support. Initially, the health workers were very reluctant to show their acceptance, especially because my study involved participant-observation, with the impression that I had come to investigate their job and report their mistakes. However, when they fully understood my research techniques, they all expressed their complete acceptance and assured me of their cooperation. As a Nigerian registered and licensed nurse, I volunteered on the units. Data were collected through open-ended semistructured interviews, participant observation, and review of hospital documents. The open-ended interviews were to encourage study participants to share their unique experiences about cancer and cancer care in their own words. I observed that many of the participants could communicate well in English. Because of my relationships and rapport with the nurses, doctors, and patients, some of them requested to participate without being approached by me first. These experiences are in congruence with Leininger's process of ethnonursing research because I moved from being a stranger to becoming a trusted friend.4 In addition, using a gatekeeper assisted me in becoming comfortable with my field site and made my participants comfortable with my presence. The fieldwork was not only for data collection; it was an avenue for me to learn and unearth things that were previously hidden through my interactions. This supports the social constructionism perspective that focuses on individual learning through social interactions. In this context, Heidegger's5 definition of truth as "unconcealment" remains relevant. In addition, I had decided not to add my own interpretation to the data; however, during analysis, I realized that I could not totally separate my interpretation from the data collected. Although this is not typical of ethnonursing, it supports Gadamer's6 emphasis on the critical role of the investigator in creating meanings in which a researcher cannot avoid his/her own views from influencing his/her judgments. Through this study, I have discovered insights and revealed blind spots or the "unknown unknowns" in cancer care in Nigeria. Interestingly, I have put these insights into context. This research has been a life-altering experience for me. Lessons learned will shape my future endeavors, inspiring me to be a better cancer care researcher. I am recommending that more ethnonursing or ethnographic studies be conducted in underreported areas of cancer care to trigger a global discourse.