2019
DOI: 10.1590/1413-812320182410.17932019
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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 admi… Show more

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Cited by 6 publications
(10 citation statements)
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“…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.…”
Section: Resultsmentioning
confidence: 99%
“…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.…”
Section: Resultsmentioning
confidence: 99%
“…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).…”
Section: Discussionunclassified
“…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.…”
Section: Introductionunclassified