“Moneywas the problem”: Caregivers’ self-reported reasons for abandoning their children’s cancer treatment in southwest Uganda
Loading...
Date
2021
Journal Title
Journal ISSN
Volume Title
Publisher
Pediatric Blood & Cancer
Abstract
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 PediatricCancerUnit ofMbarara Regional ReferralHospital in southwesternUganda.
Recorded in-depth interviewswere transcribed and analyzed to identify
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 participated
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%) childrenwere 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 effectswere
the caregivers’ reasons for treatment abandonment.
Conclusions and recommendation: Seeking cancer treatment for children inUganda is
an expensive venture and treatment abandonment is mainly caused by caregivers’ difficult
socio-economic circumstances. This problem needs to be approached with empathy
and support rather than blame.
Description
Keywords
Cancer, Children, Financial difficulty, Low- and middle-income countries, Treatment abandonment, Uganda
Citation
Atwiine B, Busingye I, Kyarisiima R, et al. “Money was the problem”: Caregivers’ self-reported reasons for abandoning their children’s cancer treatment in southwest Uganda. Pediatr Blood Cancer. 2021;e29311. https://doi.org/10.1002/pbc.29311