Turning stories into science: Integrating culture and communication into cancer care

When people think of culture, they might envision family traditions, religious ceremonies and culinary dishes that define communities and identities. Yet, culture extends beyond these visible practices to influence more profound aspects of life, including health and well-being. It shapes how individuals perceive health, illness and health care systems, influencing everything from treatment perspectives to patient satisfaction. This is especially important in the context of childhood cancer, a pressing global health challenge affecting an estimated 400,000 children annually, with only half of those diagnosed. 

The significance of culture in medicine is frequently overlooked, which can lead to gaps in patient care and negative health outcomes. However, there is growing recognition of the importance of culturally competent care. Efforts to ground medical care in the cultural context in which it is delivered can bridge the divide between the medical establishment and the people it serves, enhancing the overall health care experience.  

The Global Culture and Communication (C&C) program is a transversal program within St. Jude Global. It is designed to foster culturally appropriate processes to research, education and community engagement, all while advancing global efforts to treat — and cure — childhood cancer. 

“The C&C program was established to fill the void left by a lack of cultural understanding within medicine,”  explained Dylan Graetz, MD, MPH, director of the Culture and Communication program and assistant member of the Department of Global Pediatric Medicine. “We’re not just aiming to meet in the middle; we’re committed to truly bridging that gap.”

The program aims to empower pediatric hematology-oncology clinicians to collaborate with families and communities, building trust and enhancing communication. Through this effort, they strive to deliver empathetic, culturally sensitive, patient-centered care. 

Bridging cultural gaps in childhood cancer care

The C&C program advances its goal through education, research, capacity building and advocacy. Program initiatives include training health care professionals to recognize and respect cultural differences, identify health care gaps and develop evidence-based practices. The program also implements culturally tailored projects aligning with patients’ beliefs and values while fostering collaboration among health care professionals, community organizations and academic institutions.

“What’s often missing from many patient-centered care models is a true integration of both the patient and the clinician, along with the health care system. In our approach, we position these elements as mirrors, placing the interactions between them at the center of our model,” Graetz explained. “It’s within these interactions that we can create the most meaningful impact. We believe effective communication is central to these interactions, all shaped by cultural influences.” 

Addressing the voids created by a lack of cultural competence in medicine is vital to truly providing holistic and effective care. But to achieve this practice, it’s essential to recognize that cultural competence is not a one-size-fits-all solution. The C&C program works with clinicians to identify unique approaches to integrate culture into their practice. 

“While we often discuss cultural sensitivity and competence, the concept of ‘culture’ is complex and varies greatly among people and across regions. It’s unrealistic for us to teach about cultures we don’t live in,” said Shayla Lawrence, MPH, C&C program coordinator, Department of Global Pediatric Medicine. “Our main goal is to empower clinicians to communicate effectively with patients and families, helping them understand and consider the cultural factors that may influence perceptions of cancer and its care.”

The program also works with patients and families to identify their communication priorities and understand what information is most important regarding their child’s cancer diagnosis. “We focus on their preferred ways of receiving information and engage patients, families and survivors to gain insights into their needs so that we can address their unique perspectives,” said Lawrence. 

Turning stories into science through qualitative research

To identify barriers to cancer treatment and effective communication, investigators must understand the experiences of patients and their families. Using qualitative research, such as interviews, researchers in the C&C program are identifying ways to enhance the delivery of effective care through evidence-based methods. In this endeavor, the C&C program elevates the voices and stories of patients, a process that Graetz describes as “turning stories into science.”

“We take these rich narratives and interactions and analyze them, combining compelling accounts to describe perceived realities. We recognize that stories resonate on an emotional level while data speaks on a scientific level,” Graetz explained. "Our goal is to integrate these elements, seeing them not as mutually exclusive, but as complementary tools that enhance our understanding.”

These stories are analyzed using qualitative and mixed methods research to answer questions, ground educational initiatives and enable the creation of interventions tailored to reflect the cultural and contextual influences that shape patient experiences. This includes research investigating the impact of stigma and the importance of patient-centered communication, some of which was conducted in Guatemala and published in JCO Global Oncology.

“One of the key findings from our research in Guatemala is that over two-thirds of parents expressed having questions they wished to ask their oncologist but did not,” Graetz said. “In this setting, the patient meets with a psychologist first, and then the oncologist, so the psychologist has the opportunity to assist families in formulating a list of questions, empowering them to approach conversations with their oncologist more confidently.”

Supporting the global effort for pediatric cancer care

St. Jude remains steadfast in its commitment to curing pediatric diseases, enhancing patient care, ensuring access to quality treatment and improving outcomes on a global scale. The C&C program is vital to achieving these objectives.

Regarding the future of the C&C program, Lawrence emphasized, “One of our primary goals moving forward is to implement interventions that address the insights we’ve gained from our research on communication, culture and decision-making, which can drive meaningful advancements.”

Graetz shared insights on evolving patient and family interactions regarding these interventions, stating, “Our team engages with patients and families primarily during hospital visits. I hope that, in the future, this program will expand its efforts to connect with communities and support patients and families beyond the hospital setting.”