Understanding factors contributing to retention in care among children with cancer in sub-Saharan Africa
In the United States, children fighting cancer rarely ever abandon care. Most will complete their cancer treatment. Many more children who get cancer in the United States survive. However, in poorer countries like Botswana and Malawi in Africa, many children with cancer do not finish treatment and die. In some countries in Africa, nearly half of children with cancer end up abandoning care. This is one of the reasons why most children with cancer in Africa die. At our treatment centers in Malawi and Botswana, we see most children with cancer finish their treatment. This led us to wonder why our treatment centers are successful at keeping patients and parents engaged successfully to complete treatment. To answer this question, we plan to interview two important groups of people: the healthcare workers who treat children with cancer and the patients’ caregivers who bring their children for treatment and manage their health at home. We will develop a special survey to find out how cancer treatments affect family life. We will ask caregivers what is hard about completing treatment. Based on what we find out, we will give advice on things that can help families with children with cancer remain in care.
Project Goal: We want to find out why some children with cancer in Africa do not finish their cancer treatment. We will also find out why some children with cancer in Africa do finish. Based on our findings, we will come up with advice for other people who treat children with cancer in poorer countries. Our goal is to help all children with cancer in Africa to finish their treatment so they can live long and healthy lives. We think this work will help more children with cancer in poorer countries survive.
Projet Update 2023: There has not been sufficient research on the unique difficulties that families in sub-Saharan Africa face in supporting their children through cancer treatment journeys. In this study conducted in Botswana and Malawi, we are trying to understand caregivers' experiences during childhood cancer treatment to learn how to better support families during this difficult time. Adult caregivers from Botswana and Malawi who agree to take part in the study complete a questionnaire about their psychological and socioeconomic needs and then participate in a recorded interview with the study team to provide more details about their experiences. We will review the responses from these interviews, the questionnaires, and the patient’s medical records to better understand the difficulties that families encounter during their child’s cancer treatment. We also seek to understand how care teams can better support families during their child’s cancer treatment. We are nearing the end of enrollment and we have begun looking at the data from the interviews that have been conducted to date. We predict that the results of this study will find ways for cancer care teams in Botswana and Malawi to provide better support to families so that their children are able finish their cancer treatment.
