Management of the Disease of primary Immunodeficiencies: an exploratory investigation of the discourses and clinical and social implications

Some research teams have investigated the impact of primary immunodeficiencies (PIDs) on the quality of life of people diagnosed with them. According to the literature, some variables would play a significant role in the quality of life self-reported by people with PIDs; among these is the presence of a social support network. Therefore, we have chosen to address the issue of PIDs, starting from how the different actors of the social network contribute to generating the experience of those affected by PIDs. In particular, the objective of our research was twofold: to explore the discourses that contribute to building the experience lived by the person with PIDs and to explore ways of managing the disease. The texts collected were analyzed according to the Methodology of Textual Analysis of Computerized Data (MADIT). From the results, it emerges that a person with PIDs describes themselves and is described by others mainly as a patient, and the different aspects of their life are traced back to the pathology. People with PIDs and often their whole support network live the relationship with the disease in a passive way. Thus, the disease is suffered and not managed, for example, by practicing other social roles. We underline the importance of counteracting the admixture of organic pathology and psychological experience and the implementation of interventions that allow people with PIDs to live experiences and practice roles using which a person can be healthy (psychological and relational dimensions), even in the presence of a serious illness (organic dimension).