GuardiansCan and ACT-ALL

Background

Cancer is one of the main reasons for children’s death. In low- and middle-income countries (LMICs) such as Tanzania around 80% of children diagnosed with cancer die from the disease. In high-income countries such as Sweden around 20% of children diagnosed with cancer die from the disease. A major reason for the high number of deaths in LMICs is the fact that their guardians do not follow healthcare’s treatment recommendations. The goal with the research projects GuardiansCan and ACT-ALL is to increase survival among children diagnosed with Acute Lymphoblastic Leukemia (ALL) in Tanzania through helping their guardians to adhere to their children's treatment. Together with e.g., guardians we develop an SMS intervention that can help guardians to follow their children’s maintenance treatment for ALL.
We work together with a group of guardians (Guardian Advisory Board (GAB)) of children treated for ALL at Muhimbili National Hospital (MNH) in Dar es Salaam, Tanzania. The group consists of grandmothers, mothers, uncles, and fathers living in different regions in Tanzania including the islands Pemba and Zanzibar.

The projects consist of a number of studies

The aim of a study which started in 2024 is to describe whether and how the GAB’s work with the projects has an impact on study procedures and methods such as recruitment and data collection (Study 1). The aim of another study is to explore which concerns guardians experience during their children’s treatment and their preferences regarding an SMS intervention to improve their adherence to their children’s maintenance treatment according to guardians, children, and healthcare professionals (Study 2). In a third study we examine how many children who yearly start treatment for ALL in Tanzania, treatment adherence, treatment abandonment, and associated risk factors (Study 3). According to findings from Study 1-3 we develop an SMS intervention to improve guardians’ adherence to maintenance treatment (Study 4). Thereafter we test whether guardians want to use the intervention and find it feasible and useful (Study 5). If findings from Study 5 show that guardians want to use the intervention, and it seems to have an effect on treatment adherence, we examine whether the intervention has an impact on treatment adherence and thereby children’s chances to survive ALL (Study 6). If the intervention has an impact on treatment adherence, we provide access to the intervention to guardians of children treated for ALL in Tanzania.