Understanding Factors Contributing to Retention in Care among Children with Cancer in Sub-Saharan Africa.
Mentor Name: Mark Zobeck
Pediatric cancer treatment abandonment (TxA), defined as failure to start or complete curative therapy, is an important cause of cancer morbidity and mortality in many countries around the world. Our study aims to determine factors at multiple socio-ecological levels that contribute to care retention and TxA among children with cancer in LMICs. Through understanding these factors, our secondary aim is to develop recommendations for targeted psychosocial interventions to help support care retention for children with cancer in LMICs. In order to determine factors affecting pediatric cancer care retention and TxA, we will study the perspective of patient caregivers in Botswana and Malawi through their responses to questionnaires and semi-structured interviews about their experience in care. We will also conduct focus group discussions with medical providers to elicit insights from the treatment teams. To formulate recommendations for interventions that may improve health outcomes by improving care retention, we will triangulate the findings with feedback from the clinical care team and key stakeholders. Through both quantitative and qualitative analytical methods, we will identify factors that contribute to treatment retention.
We will evaluate the cross-sectional survey and interview data collected by trained on-site interviewers at our partner sites in Botswana and Malawi. We will produce descriptive statistics of survey results and use logistic regressions to assess risk factors associated with psychosocial stress. We (Dr. Haq and Nithya) will determine inter-rater reliability and independently code qualitative data using Dedoose (Los Angeles, California), a secure, cloud-based qualitative data analysis software. In cases of discrepancy where we are not able to reach a consensus with coding, a third collaborator will serve as a tie-breaker. We will then identify emergent themes using inductive thematic analysis. By triangulating data from the surveys, in-depth interviews, and group feedback, we will identify areas of incongruency and consult with stakeholders to develop targeted interventions. As a result of this study, we hope to improve how medical providers support patients and families through treatment to reduce TxA. This study is the first step in pursuit of understanding pediatric cancer TxA from the caregiver perspective and aims to understand the clinical, psychological, social, and economic determinants of care retention and TxA so that appropriate targeted interventions may be developed to support care retention for children with cancer in LMICs.
