Background: Breast cancer is the number one diagnosed cancer in Nigeria.1-3 Sadly, 75% of the breast cancer diagnoses in Nigeria are discovered in the latter stages of the cancer—stage III and stage IV.1-3 Late diagnosis has been attributed to lack of awareness of the signs and symptoms of breast cancer, little to no access to proper screening facilities, financial implications of seeking healthcare, unfounded myths and stigmas, and confusion on how to traverse the healthcare system in Nigeria.1-3 Research has indicated that these barriers to accessing timely healthcare and information are mitigated with a patient navigation program (PNP).4
Patient navigation, as a program, is greatly needed in Nigeria. Navigating the healthcare system in this country has proved to be a significant challenge. Poor infrastructure and frequent public hospital strikes (American Cancer Society, 2011; Lagos University Teaching Hospital, 2017) make accessing cancer care nearly impossible. Compounded with the high cost of cancer treatment, patients are often left scared and confused about how to effectively fight the disease.
The concept of a PNP is in the very early stages of development in Nigeria. In Lagos, the most populated city in Nigeria, there is 1 PNP servicing the approximately 2000 patients who will be managed for breast health at the Lagos University Teaching Hospital (LUTH). To develop this program at LUTH and throughout Nigeria, it is important to understand the experiences of patients piloting the program in order to aid in the formation of a culturally sensitive PNP.
Understanding how to create a PNP that addresses the unique needs of a breast cancer patient in Nigeria will hopefully assist in driving down the high mortality rate of breast cancer.4-7 However, the researcher did not find any studies or articles that addressed the effectiveness or the key elements of a successful PNP in Nigeria, West Africa, or even Africa. Therefore, very little was known about the development and maintenance of a PNP that accommodates the special needs of a patient fighting breast cancer in the West African context.
Objectives: The aim of this study was to understand the lived experiences of breast cancer patients who have or had a patient navigator during their breast cancer journey in Lagos, Nigeria. It was the hope of the researcher that through the narration of their experiences with the PNP in Lagos, common themes would emerge in each patient’s experience. The themes identified revealed characteristics of the PNP that are beneficial to the patients and also revealed characteristics of the program that were not so beneficial to the patients.
Methods: The researcher used a qualitative research design, specifically phenomenology, for this PNP study. Having reviewed the literature, the researcher had a firmer understanding of the basic elements that make up a PNP; however, because there is a dearth of research on PNPs in Africa, the researcher could not confidently confirm that these basic elements would be effective in the African setting. Thus, it was important that the participants for this current study were patients in the pilot program at LUTH. The participants for this study were 10 patients at LUTH who have been or are being navigated by a patient navigator. The author used a homogeneous sampling method to choose her participants. Other criteria for the participants in this study were they must read and write in English and be older than 18 years.
The researcher developed an open-ended interview protocol as the primary source for collecting data. The researcher ensured that the interview protocol answered the research questions: (a) What have you experienced in terms of the patient navigation program? (b) What are your typical interactions with the patient navigator? and (c) How do you think your experience would be different without the patient navigator?8,9
After obtaining ethical approval from the necessary institutions, the researcher conducted in-person interviews at the breast clinic in LUTH. As supported by Benner (as cited in Bevan8), the questions were asked in the language most familiar to the patient. This allowed the patients to fully express themselves clearly.8 Also in keeping with phenomenological interviewing, the researcher asked questions systematically with follow-up questions and “clarifying questions” as posited by Bevan.8 Asking clarifying questions helped to confirm what the participant was attempting to share with the researcher and ensure that the authentic experience was captured.8,10
The researcher also collected biographical data from the participants to understand the profile of an individual using the PNP. Additionally, having knowledge of the patient’s background and medical history will aid in the development of support programs within the PNP. To this end, the researcher collected the following data: age, diagnosis, ethnicity, gender, marital status, education, household size, employment, and health insurance status.
After the interviews were conducted, the author transcribed the audio tapes of the interviews and reviewed the text repeatedly, highlighting similar statements in the participants’ responses that helped to bring meaning to the experience. The author then grouped or chunked the data into categories, after which the author took all the identified statements and grouped them into themes. These themes served as the basis for writing the textural description and structural description or the context/setting under which the participants experienced the PNP. Using both the textural and structural description, the researcher wrote a description of the meaning the participants placed on their experience called the essence. From this essence, a better understanding of the PNP experience was uncovered; thus, beneficial features of this experience can possibly be developed or strengthened.
Results: From the responses given by the research subjects, similar themes emerged that provided a greater understanding of a patient’s experience in the piloted PNP. Themes that appeared frequently in the responses were: (a) Patient navigation (PN) as a source of dignity; (b) PN as a source of encouragement and empathy; (c) PN as a source for information and explanations; (d) PN as a coordinator; and (e) PN as a source for financial support. Of the 5 themes that emerged from the subjects’ responses, it appeared that the themes that had the greatest impact on patients’ experiences were the PN as a resource for information and explanations and the PN as a coordinator. This was evident in the emotional reaction a majority of the subjects had to the question, “How would things be different if there was not a patient navigator?” Their responses contained key words like “advice,” “tell us what to do,” and “organize.” The responses suggested that the subjects of this research study placed value on the PNP due to their ability to organize and simplify their breast cancer journey.
The Table shows the research themes and supporting responses from research participants.
It was noted that 2 subjects were unclear or did not understand their breast cancer diagnosis. One subject even doubted having breast cancer. PID 010 was asked, does she understand what is cancer. Her response was, “Not really, cause well me I’m not really sure it is oh. But since the doctor has seen it. It is. So me, I don’t know about it.” Additionally, PID 008 said this about being diagnosed with breast cancer, “I don’t understand because I thought maybe people that do have cancer is, is at the womb or brain or any other place, but I never knew that cancer used to enter the breast. I never heard it before.” When asked if she understood her breast cancer diagnosis when she was told she has breast cancer, PID 009 said very pointedly, “I didn’t understand.”
Conclusion: Cancer care can be complex and at times confusing in the most advanced societies. These complexities and confusions are doubly compounded in developed nations where social support systems and programs like health insurance are severely lacking or nonexistent. The PNP is a welcome intervention to patients entering the breast care continuum at the Breast Clinic at LUTH because the PN's presence has been shown to reduce or eliminate certain barriers created by complex and confusing elements of cancer care.
The participants in this study valued the PN’s role as an encourager, advisor, coordinator, and financial resource. The participants explicitly valued the PN’s abilities to link them with support and bridge the communication and service gap between the participants and the medical system. The essence of the PNP experience from a participant’s standpoint was having someone answer relevant questions and equally provide relevant information while linking a patient with individualized care in an emotionally supportive manner.
Recommendations: The results of this study could be of importance to stakeholders who wish to streamline cancer care services. The PNP at LUTH should continue to be developed with the goal of standardizing the training of a PNP in Nigeria. Emphasis should be placed on explanation of the role of the PN because some participants in this study had to be told who and what is the PN. Additionally, the training should include methods for providing emotional support, relationship building among stakeholders, as well as the PN consistently contributing to resource databases.
Future Studies: This PNP study has provided evidence that the PNP is a welcomed intervention for the patients at LUTH. As a follow-up to this study, understanding the lived experiences of medical personnel who have experienced the PNP could help to build a comprehensive program. Understanding if and in what areas a PNP affects the work of medical personnel could possibly provide information about PNP intervention strategies and program development. Additionally, research that reveals what aspects of care the PNP affects and improves could help confirm the need for a PNP in the cancer care setting in Nigeria.
References
- Jedy-Agba E, Curado MP, Ogunbiyi O, et al. Cancer incidence in Nigeria: a report from population-based cancer registries. Cancer Epidemiol. 2012;36:e271-e278.
- International Agency for Research on Cancer. World Health Organization. Cancer today. http://gco.iarc.fr/today/online-analysis-multi-bars?mode=cancer&mode_population=continents&population=566&sex=0&cancer=29&type=0&statistic=0&prevalence=0&color_palette=default. 2012.
- Prevalence of breast cancer among women. Project and Research Work. www.projectandresearchwork.com/prevalence-breast-cancer-women/Navigator Role. November 2015.
- Freeman HP. The history, principles, and future of patient navigation: commentary. Semin Oncol Nurs. 2013;29:72-75.
- Lim JW. Barriers to cancer care, perceived social support, and patient navigation services for Korean breast cancer patients. Soc Work Health Care. 2015;54:47-64.
- Shockney LD, Haylock PJ, Cantril C. Development of a breast navigation program. Semin Oncol Nurs. 2013;29:97-104.
- Wenzel J, Steeves RH. Experiencing breast cancer in managed care. Qual Health Res. 2008;18:1477-1488.
- Bevan MT. A method of phenomenological interviewing. Qual Health Res. 2014;24:136-144.
- Chiarelli AM, Muradali D, Blackmore KM, et al. Evaluating wait times from screening to breast cancer diagnosis among women undergoing organised assessment vs usual care. Br J Cancer. 2017;116:1254-1263.
- Norlyk A, Martinsen B, Kjaer-Petersen K. Living with clipped wings – patients’ experience of losing a leg. Int J Qual Stud Health Well-being. 2013;8:21891.
