Curing children, caring for families The path to personalized care in childhood cancer treatment in El Salvador

This dissertation follows the trajectory of the childhood cancer program of El Salvador in its quest to eliminate abandonment of treatment. Abandonment of treatment is said to occur when parents of children with cancer stop or even fail to start hospital treatment for their child. This happens relatively often in developing countries and results in the child’s death and is an important reason why cure rates don’t attain the levels of developed countries. This research approaches the question from the perspectives of both the parents and the hospital team, linking personal experience to institutional processes.
The program’s trajectory can be summarized as follows: after measures intended to solve the most pressing material needs impeding parents’ continuation of treatment, the hospital’s health care team implemented a general methodology for patient follow up that systematized information and standardized actions aimed at the early detection and prevention of abandonment. The resultant protocol increased insight into adherence to treatment schedule, allowed for more accurate assessment of families’ needs, and thus resulted in an intensified and more personalized care provision, for all patients in the program.
In contrast to conventional conceptions of protocolization as the end of personalized or ‘patient-centred’ care, this thesis thus shows that standardization can in fact increase personalization and the quality of care. It ends by outlining the necessary conditions for this to happen and using these to build a policy framework for those wishing to improve cancer programs in developing countries.