Medico-social study on the opinions of parents on the problems of organizing medical care for children with cancer in the Russian Federation

Abstract

To study the opinions of parents (legal representatives) on the problems of organizing medical care for children with oncological diseases, a medical and social study was conducted. This study aims to examine the opinions of parents on the problems of organizing medical care for children with oncological diseases. This study was conducted based on the developed questionnaire for recording the opinions of parents (legal representatives) on improving the organization of medical care for children with cancer. The questionnaire comprised 27 questions, in which the respondents were asked to choose one or more answer options for each of them. For objectivity, the questionnaires were filled in anonymously. This medical and social study showed that 81.1 1.9% of the respondents are not satisfied with the attitude of doctors and nursing staff toward them and their children, 15.9 1.8% are only partially satisfied, and 3 0.8% are fully satisfied (roughness in communication (35.8 2.4%), lack of sufficient attention from medical personnel (21.3 2.0%), and lack of interest in the success of treatment (19.7 2.0%)). The combination of these options was noted by 23.2 2.0% of respondents. As the preferred treatment site for their children, 63.7 2.4% of the respondents indicated a medical organization of federal subordination and 33.9 2.4% a medical organization located outside the territory of the Russian Federation, in which 57.4 2.4 % of the respondents mentioned the possibility of receiving a patient-oriented service and complex routing during treatment between the medical organizations in the Russian Federation as a reason for choosing. Furthermore, 12.7 1.6% of the respondents indicated a lack of confidence in the qualifications of medical personnel in the Russian Federation; 11.8 1.6%, the lack of comfortable conditions for examination and treatment; 5.3 1.1%, the lack of necessary diagnostic and treatment methods; and 12.8 1.6%, a combination of the listed options. Overall, the findings of this study indicate the need to further improve the organization of medical care for children with cancer: introducing patient-oriented approaches and improving patient routing to create a patient-centric health care system for organizing medical care for children with cancer are necessary.