Session : Engagement of communities, civil society and patients as research partners
FROM AWARENESS TO ACTION: EMPOWERING COMMUNITY STRUCTURES TO REFER SUSPECTED CHILDHOOD CANCER CASES IN MALAWI
NYASULU C. 1, BUTIA M. 1, MALOYA S. 1, CHOPI V. 1, MZIKAMANDA R. 1
1 Baylor foundation malawi, lilongwe, Malawi
Background and aim
Malawi is a low-income country in Southern Africa with an estimated population of 22 million and a GDP per capita of approximately USD 500, facing significant challenges in childhood cancer detection and care. While an estimated 1,200–1,500 new pediatric cancer cases are expected annually, only about 450 are diagnosed, revealing a substantial gap in early identification and referral. This challenge is compounded by the presence of only two pediatric cancer treatment centers, both located at tertiary-level facilities, which limits timely access to care for children in remote and underserved communities. Community Health Workers (CHWs) and Child Protection Workers (CPWs) serve as critical frontline providers in identifying health and social concerns at the community level; however, limited training in childhood cancer recognition often leads to missed opportunities for early intervention.
Objective
In response, this Quality Improvement (QI) project aimed to strengthen the capacity of CHWs and CPWs to recognize suspected childhood cancer cases and facilitate timely referrals within the health system.
Methodology
The project used a capacity-building workshop model to train 28 CHWs and 32 CPWs across 7 communities in central and northern Malawi, running from June 2023 to June 2024. Seven workshops were held, with pre-tests administered at the beginning to assess baseline knowledge of childhood cancer and referral pathways. The sessions combined theoretical education with practical applications, using real-life patient and guardian stories from each community. Follow-up visits after 3 months included post-tests and interviews to evaluate knowledge gained, actions taken, and challenges faced. Data were analyzed using descriptive and thematic analysis.
Results
Knowledge about childhood cancer increased significantly among CHWs and CPWs, rising from 20% in pre-tests to 100% in post-tests. Confidence in making referrals increased from 25% to 90%. Before training, CHWs and CPWs struggled to identify suspected childhood cancer cases and often referred children for general conditions. In the year following training, 84 suspected cases were referred to primary health facilities. However, barriers such as a lack of a patient tracking system, guardian negligence, inability to refer directly to tertiary facilities, inadequate training for clinical staff, long distances to referral centers, and lack of transportation delayed timely referrals to the National Cancer Center.
Conclusion
This initiative demonstrated the impact of empowering CHWs and CPWs in improving early childhood cancer detection and referrals. Future recommendations include strengthening collaborations between community structures and tertiary facilities, expanding awareness and capacity-building efforts across all levels of the health system, and integrating patient-guardian stories to enhance the impact in low-resource settings such as Malawi.At the policy level, findings support the integration of childhood cancer awareness and referral protocols into national community health and child protection guidelines,