At the Center of an Epidemic, Nursing Moves the Needle
January 31, 2020
Carolina Nursing
The UNC Project Malawi Building
“Here, it’s unthinkable.”
Lixin Song, describes the pediatric cancer ward in Kamuzu Central Hospital (KCH) in Lilongwe, Malawi, where ailing children recuperate two to a bed and nurses must mix biohazardous drugs by hand without proper ventilation. In the adult clinic, patients pack waiting rooms from morning to night, returning the next day until they can be seen.
A common thread of cancer, in nearly every corner of the world, is that its care and treatment are influenced and sustained by the power of nursing and nurses. From cancer prevention, treatment and survivorship to palliative care, oncology nurses interact with patients more than any other provider on a cancer-care team, and the expansive nature of their skillset touches each part of the journey for the patient and family. But, in Malawi, there is an incredible shortage of oncology care professionals, and those nurses working with cancer patients do not have the oncology training and knowledge they need to provide quality care. Patients are left with a lack of means and support to manage the diagnosis and the treatment-related impacts on their bodies and lives.
Most nursing care is palliative, as patients are expected to die.
These problems are neither the worst nor the least of what this African nation experiences under this extreme burden of HIV-related cancerous disease that kills an increasing number of Malawi’s citizens each year. This patient population is poor, underserved and at risk for poor outcomes. They are also patient, welcoming, generous – and frightened about a disease that is still shrouded in so much stigma, patients often need help breaking the news to family. Coming from a country where cancer awareness ribbons can be found in every color of the rainbow, where well-attended races and relays raise money for the most innovative research, where softly lit television commercials advertise state-of-the-art cancer centers, Song says the situation is humbling.
“Seeing what they go through daily gives us an urge to help and a sense of great responsibility,” says Song, who is an associate professor and Beerstecher-Blackwell Distinguished Term Scholar at Carolina’s School of Nursing. “It’s our responsibility. We have to help not only the patients and their families to get better care and achieve better outcomes, we also need to help the nurses to be better prepared for the daily challenges they face.”
In response to Malawi’s cancer epidemic, UNC Project-Malawi, which has been an established resource in Malawi since the 1990s, is in the process of building a new cancer hospital in Lilongwe on the campus of Kamuzu Central Hospital (KCH), and they need a highly skilled nursing force trained in oncology. The project asked faculty at the School of Nursing to travel there in December 2018 to assess the landscape of cancer care and determine the tools these front-line providers will need to care for and treat this growing population of patients – with a culturally relevant perspective that serves the spirit of the country and those who call it home.
In Malawi, Dean Nena Peragallo Montano, Ashley Leak Bryant, assistant professor, both in Carolina’s School of Nursing; and Song met with administrators, leaders and officials at KCH, nursing faculty and students at Kamuzu College of Nursing (KCN), Malawi Palliative Care and the Malawi Ministry of Health to learn the landscape of Malawi’s cancer crisis and the status of nursing education. To gain a sense of the particular needs and desires of Malawi’s patients and oncology nursing care, they spent time listening to nurses, nurse leaders, and oncologists who work for these institutions, as well as patients and families.
“We wanted to know how we could be of help and be impactful in terms of hands-on oncology nursing training and education, and to build the capacity of nurses in oncology and provide them resources. They need high quality and up-to-date practice guidelines, and many of them have wanted to continue their education for quite some time, but there has been limited funding to do it,” says Bryant.
Malawi is a small country in Southeastern African of approximately 17 million people, and according to 2018 statistics from the HPV Information Centre, it has the second-highest cervical cancer rate of any country in the world. Cervical cancer, Kaposi sarcoma, and lymphoma are the most common cancers in Malawi, with infectious diseases such as HIV playing a role in the pathogenesis of these cancers.
“Seventy percent of cancers in Malawi are HIV-related. There is still a lack of education and knowledge related to how HIV is spread and transmitted. Because of this connection, cancer is highly stigmatized in this country,” says Bryant.
The stigma of cancer also impacts cancer-care nurses, who in the past may been reluctant to treat oncology patients due to misconceptions about the disease. They work dangerously long shifts with an extremely high patient-to-nurse ratio, putting them at risk for burnout that compromises the safety of patients. Patients generally receive chemotherapy in the hospital and return home with little guidance on how to manage symptoms and side effects. Palliative care focuses on pain management with no psychosocial components of care for the patient and family as they navigate an upcoming death. Survivorship programs are nonexistent, as cancer is primarily associated with death and dying, itself a taboo topic in the country.
The team’s recommendations are based on the needs they observed and interview outcomes. The nurses they met with expressed great interest in developing their careers through continued education and involvement in research, both in person and online. In addition to supplying educational materials and online modules for continuing education, the School wants to support Malawi’s PhD-prepared nurses and empower them to shape an oncology nursing workforce in their country.
“Chifundo Zimba, who graduated with her doctorate from UNC in 2016, and Agatha Bula are doctorate-prepared nurses who we’ll partner with in a ‘train the trainer’ model that they can use to educate the nurses they work with. We also want to assist these nurses as they develop their careers, teach them to write grants for the research they want to do and guide them on manuscripts for publications. We want this to be a collaborative process where we’re really working together on one team and they can benefit from our resources.”
In line with a model of culturally relevant care, the team took into account family structure and traditions, Malawi’s strong sense of community, the natural day-to-day routines of Malawi’s citizens, the status of nursing education in Malawi and the policies of nursing staff in clinical settings and the goals of KCN.
“In Malawi, cancer doesn’t only affect the patient, but the whole family, and there’s an incredible collectivism how families work. The burden for families may be great, and that can lead to tension, or even the patient removing himself from the family unit. Nurses need to be able to treat the family along with the patient and help the families process what the disease means and what treatment will be like, mobilize the resources” says Song.
The team noticed that clinics don’t operate on a patient schedule, but on a first-come-first-served basis. Song says waiting rooms would be perfect places for patient interventions and education. As patients may wait all day, they are in a group where many could be reached at once. Appropriately gathering information and truly serving this patient population won’t look like it does anywhere else, and it is worth learning about the structural differences between Malawi’s processes and UNC’s to figure out how to implement culturally relevant practices that will work, says Song.
That work is already taking shape. In May and June 2019, the School provided oncology nursing materials to Malawi’s nurses via videoconferencing. Online self-guided study formats from Jen Haley, a practicing oncology nurse in the inpatient oncology unit in the North Carolina Cancer Hospital, and Bryant and Song, and are ongoing. Haley has worked in Rwanda as an oncology nurse educator at the Butaro Cancer Center of Excellence, and she accompanied Bryant on a trip to Malawi in July 2019 and worked closely with the Malawian nurses. The team engaged in an ongoing dialogue between the School, KCH and KCN on how they might collaborate long term to advance cancer care in Malawi and enhance research initiatives within both schools.
“Just as we’ve learned from other epidemics, we can start small and build up little by little if we want there to be a real benefit for this community,” says Song.
For this team and the nurses in Malawi, the goals and purpose are mutual – they want to save lives.
Bryant says, “We want to be able to continue this work for a long time, and to do that, we focus on meeting them where they are and learning from them.”