Sofia Pais

The Values of Empowerment and Citizenship and the Experience of Children and Adolescents with a Chronic Disease

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 institutions …). 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.

Community as Locus for Health Formal and Non-Formal Education: The Significance of Ecological and Collaborative Research for Promoting Health Literacy

The World Health Organization (2002) considers that a balance between government, community, and individual action is necessary for health education and promotion, recognizing that non-governmental organizations, local groups, and community institutions are central in this process. This argument reinforces the idea that individuals should be empowered and encouraged to make use of accurate health-related information. This paper highlights the potential of a socio-political perspective for the development of health literacy within children and adolescents and presents two studies conducted in two daily life contexts: a community organization and a school. Both studies are based on methodological pluralism and collaborative research approaches and explore the promotion of health knowledge in formal and informal settings. Study 1 is based on a mixed methodology, using focus group discussions and questionnaires with children and youth with chronic diseases to explore the perceived impact of their participation in support associations. Study 2 presents four intensive case-studies in schools where adolescents used community profiling, a participatory research methodology, to explore health rights and access to healthcare in both a historical and prospective vision. The results enable a deeper understanding on how powerful tool ccommunity resources can be for individual and collective empowerment on health issues.