THE EVERYDAY WORLD OF PATIENTS WITH DISEASES CAUSED BY PRIMARY IMMUNODEFICIENCIES

The authors of the article analyze the everyday world of the community of patients with primary immunodeficiencies. This group includes more than 450 hereditary diseases caused by defects in cells and proteins of the immune system. They consider factors influencing the everyday life of patients (A. Schutz). Patients with primary immunodeficiencies spend their everyday life in the space of an apartment, a hospital. And this throughout their lives, because the diseases are incurable. This is a struggle for health with daily medication, treatment, and the inability to attend school and plan a career or a job to their liking. The authors also interpret the concept of “everyday thinking”, namely, in what ways patients with primary immunodeficiencies solve practical problems in their lives and satisfy their interests and needs. The conditions necessary for the everyday world of patients to become friendly and non-isolated are considered. The idea is put forward that unification in public organizations facilitates the transition of patients from the everyday world of isolation to the social practice of interaction. The study uses the method of sociological survey. At the time of the study, the respondents were included in the Register of Patients with Primary Immunodeficiencies. Age composition of respondents 1) minor patients for whom questionnaires were filled out by parents; 2) adult patients; 3) respondents whose diseases were detected in adulthood.