Sistematización de la experiencia de construcción del ecosistema virtual de Pausa por una Buena Causa como herramienta de información y soporte para los padres de niños con cáncer en el 2020

Abstract

The objective of this project was to contribute to improving the quality of life of children with cancer and their families. For which, different activities were developed that provided socio-emotional support that somewhat alleviated the impact that this disease generates for some families. The information collection was carried out with the support of the Society for the Fight Against Cancer SOLCA, who facilitated interaction with the parents of families and patients admitted to this oncological institution; Surveys, focus groups and interviews were applied to those who revealed their experiences and persecutions from the diagnosis of their damming to the current treatment process and how this has affected their lives. The main problems detected are related to the misinformation of cancer treatments and protocols and the lack of economic resources of the relatives. Based on these results, the logical framework was built with different activities that mitigate the deficiencies detected in a certain way. First, a web page was developed with relevant information on protocols and treatments related to different types of cancer that is publicly accessible; second, informative talks were held in person and via the web where physical and digital information was delivered on how to handle the situation with an emotional approach; third, activities were developed to manage platelet donation and thus reduce the economic impact on family members. At the end of the project, it was concluded that the diagnosis of childhood cancer is a problem that not only affects the pediatric patient, but also affects the family, social, work, psychological, nutritional and educational. KEY WORDS: CHILDHOOD CANCER, PLATELETS, WEBSITE, COMMUNICATION STRATEGY, PLATELETS, NETWORKS, TALKS.