The values of empowerment and citizenship and the experience of children and adolescents with a chronic disease

Abstract

In spite of becoming progressively common, chronic diseases are quite invisible in modern societies, as these silent diseases are relatively absent from public socio-political debates. As a consequence, social agents and institutions seem to reveal significant difficulties in coping with the singularities of children and adolescents with a chronic disease and their parents. This article stresses the importance of recognising children and adolescents with a chronic disease as citizens who have both special needs and special rights, and emphasises the important role of support associations as mediators among various actors in the health sphere (private, public, political, medical institution). This research focuses on the empowerment, well-being and participation behind the experience of chronic conditions as perceived by children and adolescents with chronic illnesses, their families, and health and educational professionals. The data collected includes interviews, focus group discussions, questionnaires and a family narrative. The results suggest that there is a strong need for alternative discourses about citizenship and participation in the life experiences of people with a chronic disease, especially because the quality of their life contexts appears to be a determinant factor for well-being and empowerment.