How do we live with chronic disease? A rights-based approach promoting the wellbeing of children with chronic disease

Abstract

This paper focuses on the life experiences of children with chronic disease, a group whose invisibility involves particular challenges in their relationship with professionals in important life contexts, such as family, school and hospital. The study includes two complementary phases: i) Phase 1, composed of 15 interviews with parents, education and health professionals and two focus group discussions with children, and children and their mothers; and ii) Phase 2, which included self-report questionnaires administered to parents (n = 152) and children with chronic disease (n = 176). Based on a mixed methodology, this study combines quantitative and qualitative methods assuming that plural approaches allow for a deeper understanding of the life conditions of children with chronic disease and their families. The results reinforce the reproduction of social stereotypes and the tendency to focus on the individual ability to solve problems, which still remain to be circumscribed to the people’s chronic disease sphere. Moreover, this paper reveals the central role that inclusive contexts have on children’s wellbeing.

Adapting to (co)exist: experience of men with hemophilia in southern Brazil

“…The adaptation in chronic illness is understood as the adjustment that people make to the different contexts in which they get involved and act, considering the specifics of their illness. For example, the pain and absences resulting from hospitalizations express the need for continuous adaptations (13) . This is a dynamic process that occurs throughout the life cycle of men with hemophilia, usually starting in childhood.…”

Percepção dos profissionais de saúde sobre a criança com doença crônica

“…Complementarmente, a relação de profissionais de saúde com familiares e crianças com doença crônica é muito relevante, pois os discursos e práticas desses profissionais geram grande impacto na vida destas famílias e de seus filhos (Pais & Menezes, 2019).…”

Vulnerabilidades experienciadas na escolarização de crianças e adolescentes com doenças crônicas: perspectiva dos profissionais da educação

“…Essas demandam intervenções clínicas e mudanças nos hábitos de vida, (2) além de um remanejamento familiar para conciliar as necessidades do membro da família com a doença crônica, refletindo nas esferas social, econômica e física. (3) Entende-se que a escola é um espaço no qual o desenvolvimento das pessoas tende a ser fomentado, de forma a incentivar sua autonomia. Nesse contexto, inúmeros são os desafios aos quais os professores, familiares e alunos estão expostos na educação, sobretudo, inclusiva.…”