Integrating Culture and Improving Communication in Global Pediatric Oncology

Summary

Around 90% of all children with cancer live in low- and middle-income countries (LMICs) yet only 30% survive. In these settings, cultural differences contribute to how patients and families view and interact with the healthcare system. For children with cancer, these differences may cause delayed diagnoses and discontinuation of treatment, leading to poor outcomes. Additionally, these differences can create gaps in understanding, which widen further when communication between healthcare teams and families is ineffective. Our research aims to bridge these gaps by focusing on cultural sensitivity and improving communication in clinical care. These factors are key to improving health outcomes for children with cancer.  

The Culture and Communication Program works to improve outcomes for children with cancer and other catastrophic diseases in LMICs by promoting culturally sensitive care and communication. Our team collaborates closely with research teams around the world. Through these partnerships, we adapt our research methods—such as interviews, focus groups, observations, and surveys—to local languages, cultural contexts, and specific needs. By improving how we conduct research, we ensure that the voices of both patients and families are heard, which helps inform the treatment strategies used in various settings. The content of our research focuses on patient-centered care and the interactions between healthcare systems and patient families. We believe that communication is central to these interactions, and they are all influenced by culture. Our work also focuses on improving communication among clinical teams, which often include providers from different specialties. By enhancing team communication and collaboration, we can provide higher-quality, culturally sensitive care, ultimately leading to better health outcomes for patients. 

Significance

The impact of our work is broad. Improving integration of culture and provision of high quality communication will not only benefit patients and their families but also healthcare providers.  

The Culture and Communication Program has developed several resources to strengthen research capacity in pediatric cancer care. These resources include educational materials on the Cure4Kids platform, qualitative research workshops, the first Regional Qualitative Research Center at King Hussein Cancer Center (KHCC) in Jordan, and the Qualitative Research Academy. More informed research can lead to advances in pediatric cancer treatments and strengthen the healthcare workforce.  

Additionally, the Culture and Communication program has led research that has specifically impacted pediatric cancer care quality, accessibility, and patient acceptance of care. For example, we have developed tools to assess stigma and evaluate communication among clinical teams. These tools help improve the quality of care and make treatment decisions more efficient. We have also adapted a pain management app to better meet the needs of Black and Latino pediatric cancer survivors, ensuring it is culturally appropriate for these groups. 

Our research also has economic implications. The aids we are creating to guide treatment decisions for children with poor prognoses can lead to a more efficient use of healthcare resources. Finally, we advocate for stronger protections for pediatric cancer survivors worldwide, as many face discrimination in areas like employment, housing, and access to services. 

Benefits

Demonstrated benefits are those that have been observed and are verifiable.

Potential benefits are those logically expected with moderate to high confidence.

Issued recommendations about assessing quality of communication between interdisciplinary clinical teams in critical care settings.  demonstrated.

Clinical

Guidelines

Collaborated with patients, their families, providers, and foundation partners to optimize research tools.  demonstrated.

Clinical

Patient-guided research (new TSBM benefit)

Empower patients and their families with a patient navigator tool to make informed treatment decisions.  potential.

Clinical

Shared decision-making (new TSBM benefit)

Improve clinical treatment decision making with a stigma assessment tool for providers. demonstrated.

Clinical

Therapeutic procedures

Developed therapeutic procedures tailored to the stigma experienced by pediatric cancer patients and their families.  demonstrated.

Clinical

Therapeutic procedures

Improve capacity for researchers to conduct qualitative research with online resources available on Cure4Kids, qualitative research workshops, and the Qualitative Research Academy.  demonstrated.

Community

Capacity-building (program-identified benefit)

Created assessment tools for quality of communication between interdisciplinary teams.  demonstrated.

Community

Health care quality

Improve care quality by educating providers about stigma.  demonstrated.

Community

Health care quality

Improved accessibility and acceptability of a chronic pain app for Black and Latino pediatric cancer survivors.  demonstrated.

Community

Health care quality

Reduce resource burden with a decision aid for children with poor prognoses to expedite treatment decision making.  potential.

Economic

Cost savings

Reduce cost of pediatric cancer by working to break down stigma associated with pediatric cancer, thus helping families seek out care sooner before care is more expensive.  potential.

Economic

Societal & financial cost of illness

Advance legal protections for survivors of pediatric cancer and other catastrophic diseases to prevent discrimination. demonstrated.

Policy

Policies

This research has clinical, community, and economic implications. The framework for these implications was derived from the Translational Science Benefits Model created by the Institute of Clinical & Translational Sciences at Washington University in St. Louis.

Clinical

Our pediatric cancer communication work has identified priorities for patients and families with childhood cancer and will lead to reliable indicators that assess people-centered communication. In addition, we have collaborated with survivors, families, healthcare providers, and foundation partners to design a tool to assess interdisciplinary communication in clinical teams. This tool can be used to design and evaluate interventions intended to improve interdisciplinary communication in critical care interactions. Other pediatric cancer communication work will deliver reliable indicators to assess people-centered communication in pediatric cancer.    

Finally, our stigma assessment tool will help healthcare providers understand the stigma their patients and patients’ families face. By using this tool, providers can adjust their treatment recommendations toward the best course of action for their patients. We have also designed clinical interventions to address the internalized and associative stigma that patients and their families may experience. 

Community

Through ongoing education and assessment, healthcare providers will improve communication with patients and families, as well as with interdisciplinary healthcare teams. Our work will also help increase understanding of stigma and lead to better care delivery, higher quality of care, and improved patient outcomes. By helping providers understand stigma, we can reduce the emotional and social barriers that may prevent patients from seeking care or sticking to their treatment plans. 

Stigma and financial hardship assessment tools will enable healthcare providers to identify patients who are at higher risk for stigma or financial challenges. With this information, providers can work with the community to provide support and reduce the negative effects of stigma and financial hardship on access to care. 

Patient navigator interventions will also empower families to advocate for their child’s care. These tools will help families understand how the healthcare system works and give them the confidence to make informed decisions about treatment, improving their experience with care. 

In addition, we are collaborating to culturally adapt a mobile app for managing chronic pain, specifically for Black and Latine pediatric cancer survivors. This adaptation will make the app more accessible and acceptable, ensuring that these survivors can manage their pain in a way that respects their cultural needs and preferences. 

Finally, through capacity-building efforts and education in qualitative research and communication, we are helping healthcare providers improve their ability to conduct meaningful research with patients and families. These efforts will also enhance providers’ people-centered communication skills, ensuring that care delivery is more effective, compassionate, and better aligned with the needs of patients and their families. 

Economic

Many families in LMICs face economic challenges that limit their access to healthcare which can cause delays in seeking treatment, resulting in worse health outcomes. Financial hardship can delay or prevent diagnosis of pediatric cancer, influence treatment choices, and even lead to treatment abandonment. Our collaborative efforts to address financial hardship focus on identifying these barriers early, helping families seek care sooner, and ultimately reducing the economic burden on families and healthcare systems. 

In addition to financial hardship, stigma can prevent families from seeking care promptly. By addressing stigma, we help families start treatment earlier, which can reduce costs and improve treatment outcomes.  

Children with advanced cancer in LMICs are especially vulnerable, as many healthcare centers lack the necessary resources to offer curative treatments. Healthcare providers often face challenges in making treatment decisions due to a lack of local support tools that consider the unique contextual factors and available resources. To help alleviate these challenges, we are developing a decision tool that will support providers by streamlining decision-making and reducing cognitive burdens. This tool will provide structure, clarity, and transparency, making it easier for providers to make informed decisions that are equitable and appropriate for each patient’s circumstances. By improving decision-making, we can help ensure that resources are used more efficiently, leading to better care and cost savings for both patients and healthcare systems. 

Policy

Caregivers of children with cancer and survivors of childhood cancer often face significant social and bureaucratic barriers, such as difficulties accessing mortgages, loans, medical and life insurance, and other essential resources. In some cases, they may also experience discrimination in employment, which can negatively impact their ability to rebuild their lives after treatment. Our work aims to better understand and address these legal protections for pediatric cancer survivors globally, focusing on the injustices they often encounter. By improving these protections, we aim to enhance the quality of life for families facing childhood cancer from the time of diagnosis through survivorship, helping them overcome social and legal challenges. 

Lessons Learned

One of the most critical factors in achieving the demonstrated benefits of our work has been our collaboration with local research teams in LMICs. These teams are not only familiar with the local languages and cultural contexts, but they also bring invaluable insights into the everyday challenges that patients and families face. Their deep understanding of the community’s needs, customs, and social dynamics ensures that our research is grounded in the lived experiences of the people we aim to help. 

In addition to this local expertise, the voices of patients, families, and community members have been essential in shaping our approach and refining our interventions. By prioritizing these perspectives, we’ve been able to uncover key insights that we might have otherwise missed. These insights have directly informed the development of our tools, interventions, and resources, allowing us to tailor our strategies to better fit the needs of the populations we serve. Without the active involvement and guidance from those directly impacted by pediatric cancer, we would not have been able to create solutions that resonate with the community or make a lasting impact on care outcomes. 

Another critical element has been our partnerships with the St. Jude Global Alliance member institutions. These partnerships have not only broadened the scope of our research but also provided access to a network of trusted collaborators with shared goals. These institutions contribute unique knowledge, capacity, and resources that allow us to conduct comprehensive and culturally sensitive research. Without these partnerships, we would have lacked the connections, resources, and depth of understanding necessary to drive meaningful change in diverse regions. 

Moreover, working collaboratively to build capacity in qualitative research has been indispensable. The knowledge and skills shared among the research teams have enabled us to collect rich, actionable data and understand the complexities of patient and family needs on a deeper level. This collaboration has ensured that we can make evidence-based decisions and continuously improve care delivery. Without this investment in building local research capacity, we would not have been able to develop research strategies that are both effective and sustainable in the long term. 

In summary, the combination of local expertise, community involvement, strong partnerships, and capacity-building in qualitative research has been essential for achieving our demonstrated benefits. Each of these factors contributed to our success, and without them, we would not have been able to develop the effective, culturally appropriate solutions that are driving positive change in pediatric cancer care globally.