0213/2019 - How do we live with chronic disease? A rights-based approach promoting the wellbeing of children with chronic disease. Como é que vivemos com doenças crônicas? Uma abordagem baseada em direitos para promover o bem-estar de crianças com doenças crônicas.
Este artigo foca-se nas experiências de vida de crianças com doenças crônica, cuja invisibilidade envolve desafios particulares no que respeita à sua relação com profissionais, em importantes contextos de vida, como sejam a família, a escola e o hospital. Este estudo inclui duas fases complementares: i) Fase 1, composta por 15 entrevistas com pais, profissionais de educação e de saúde, e dois grupos de discussão focalizada com crianças e com crianças e suas mães; e ii) Fase 2, a qual inclui questionários autoadministrados a pais (n = 152) e a crianças com doença crônica (n = 176). Baseado numa metodologia mista, este estudo combina métodos qualitativos e quantitativos, assumindo que abordagens plurais permitem um conhecimento mais aprofundado das condições de vida das crianças com doença crônica e suas famílias. Os resultados reforçam a reprodução de estereótipos sociais e a tendência para enfatizar a capacidade individual para resolver problemas, a qual parece estar ainda circunscrita à esfera das pessoas com doença crônica. Para além disso, este artigo revela o papel central que os contextos inclusivos têm no bem-estar das crianças.
Palavras-chave:
doença crônica, crianças, bem-estar, empoderamento, contextos de vida
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.
Keywords:
chronic disease, children, wellbeing, empowerment, life contexts
Como é que vivemos com doenças crônicas? Uma abordagem baseada em direitos para promover o bem-estar de crianças com doenças crônicas.
Resumo (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.
Palavras-chave (keywords):
chronic disease, children, wellbeing, empowerment, life contexts
Pais, S.C, Menezes, I. How do we live with chronic disease? A rights-based approach promoting the wellbeing of children with chronic disease.. Cien Saude Colet [periódico na internet] (2019/jul). [Citado em 24/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/how-do-we-live-with-chronic-disease-a-rightsbased-approach-promoting-the-wellbeing-of-children-with-chronic-disease/17287?id=17287&id=17287
