Money was the problem”: Caregivers’ self-reported reasons for abandoning their children’s cancer treatment in southwest Uganda

Abstract

Introduction: Treatment abandonment contributes significantly to poor survival of children with cancer in low- and middle-income countries (LMIC). In order to inform an approach to this problem, we investigated why caregivers withdraw their children from treatment. Methods: In a qualitative study, carried out in October and November 2020, in-depth interviews were conducted with caregivers of children who had abandoned cancer treatment at the Pediatric Cancer Unit of Mbarara Regional Referral Hospital in south- western Uganda. Recorded in-depth interviews were transcribed and analyzed to iden- tify themes of caregivers’ self-reported reasons for treatment abandonment. The study was approved by the Review and Ethics Committee of Mbarara University of Science and Technology. Results: Seventy-seven out of 343 (22.4%) children diagnosed with cancer abandoned treatment during the study period; 20 contactable and consenting caregivers partici- pated in the study. The median age of the caregivers was 37 years and most (65%) were mothers. At the time of this study, eight (40%) children were alive and five (62.5%) were males; with a median age of 6.5 years. Financial difficulty, other obligations, the child falsely appearing cured, preference for alternative treatments, belief that cancer was incurable, fear that the child’s death was imminent and chemotherapy side effects were the caregivers’ reasons for treatment abandonment. Conclusions and recommendation: Seeking cancer treatment for children in Uganda is an expensive venture and treatment abandonment is mainly caused by caregivers’ dif- ficult socio-economic circumstances. This problem needs to be approached with empa- thy and support rather than blame